Just got back from the hospital, the last chemo did not go ahead because my blood levels are too low. After discussion with the chief chemo nurse it was decided that it will also not be necessary to delay it a week, I can just skip the last one.
So I am done………chemo finished……the dots are smile pauses………
So all I did was to have my blood tested and waited for the results in the chemo room….I was offered lunch while I was waiting…so that was a nice treat.
Everyone was smiling for me when I said goodbye…probably because I was smiling like a Cheshire cat…. I wished them all every success with treatments and walked away with a spring in my step.
The weather is wonderful today with crisp blue skies and the odd fluffy cloud….and the sun seems to be shining extra bright for me today….
I am done with hospitals now for a good month before I meet up with my oncologist. The only advice given to me was to take it easy over the next couple of weeks so that my blood can return to healthy levels.
I was advised not to drive for a week because if I had an accident I could bleed to death which was too much detail to hear when feeling on a high. It is not the first time my levels have been so low….so I will just take it easy anyhow…..I have no burning hoops to jump through this week thankfully.
Friday 25 July 2008
Last chemo
In a couple of hours I will be having my last chemotherapy, so today is a big day for me on my road to recovery.
It has been a rollercoaster ride since January when I began and has taken nearly five months to complete the treatment instead of the planned four. This was due to delays in treatment because of low blood counts and various other minor blood level issues.
Looking back over the last few months I have been very lucky that I was able to independently care for myself. I heard so many horror stories over this treatment I was receiving and I am very grateful not to have had any severe reactions.
I am not making it sound like it was easy…because it certainly has not been easy and I will continue to feel the effects of the chemo for many months. It can take up to 12 months for the active ingredients to be flushed from my system and to feel normal again.
Luckily I am young and should recover from treatment well….lets just hope the chemo brain diminishes quickly because feeling like a zombie with my slow reactions is very frustrating.
This last big chemo has taken until now to ease and it just confirms that chemotherapy is a progressive treatment.
I will be very happy saying good bye to my chemo nurses today and hand on heart wish never to enter that chemo room again ever in the future.
I am done and dusted so to speak and my recovery now will be my focus as I piece back my life before this blip in my life occurred.
Tonight will be a celebration with my partner as we kiss goodbye to the drama of the last five months. I have a tear in my eye as I write this as it is a very big step in this process. I truly never thought that I would be alive or physically able to write this account of my cancer journey.
Of course I am extremely happy I am alive and doing well and will continue to do well…
It has been a rollercoaster ride since January when I began and has taken nearly five months to complete the treatment instead of the planned four. This was due to delays in treatment because of low blood counts and various other minor blood level issues.
Looking back over the last few months I have been very lucky that I was able to independently care for myself. I heard so many horror stories over this treatment I was receiving and I am very grateful not to have had any severe reactions.
I am not making it sound like it was easy…because it certainly has not been easy and I will continue to feel the effects of the chemo for many months. It can take up to 12 months for the active ingredients to be flushed from my system and to feel normal again.
Luckily I am young and should recover from treatment well….lets just hope the chemo brain diminishes quickly because feeling like a zombie with my slow reactions is very frustrating.
This last big chemo has taken until now to ease and it just confirms that chemotherapy is a progressive treatment.
I will be very happy saying good bye to my chemo nurses today and hand on heart wish never to enter that chemo room again ever in the future.
I am done and dusted so to speak and my recovery now will be my focus as I piece back my life before this blip in my life occurred.
Tonight will be a celebration with my partner as we kiss goodbye to the drama of the last five months. I have a tear in my eye as I write this as it is a very big step in this process. I truly never thought that I would be alive or physically able to write this account of my cancer journey.
Of course I am extremely happy I am alive and doing well and will continue to do well…
Tender
I have had a strange pain in my right foot for a few days now and it is preventing me from getting out and about at the moment. A saw has appeared on the inside of my lip also which is very delicate and tender.
I called the chemo nurse and it was recommended to visit my doctor today to get meds to help out with the pain. I have an appointment this afternoon so hopefully I can be prescribed something to ease me into the weekend.
This last big chemo is having a big effect on my body and I am finding it hard to function mentally….just stringing words together for my log is such a hard task.
I feel really slow and hazy and it is soooo bloody frustrating …..
It is bloody typical I go through 5 months of chemo and just as the last one is dawning this Tuesday…side effects start appearing.
All I can say is that if my hair falls out now I am not going to be a happy person to be around…surely the universe would not be so cruel…would it…
I called the chemo nurse and it was recommended to visit my doctor today to get meds to help out with the pain. I have an appointment this afternoon so hopefully I can be prescribed something to ease me into the weekend.
This last big chemo is having a big effect on my body and I am finding it hard to function mentally….just stringing words together for my log is such a hard task.
I feel really slow and hazy and it is soooo bloody frustrating …..
It is bloody typical I go through 5 months of chemo and just as the last one is dawning this Tuesday…side effects start appearing.
All I can say is that if my hair falls out now I am not going to be a happy person to be around…surely the universe would not be so cruel…would it…
Thank you so much
When life takes a turn for the worse and all your worse fears become reality it is amazing that in the midst of all the turmoil, love, caring and support in many ways find’s it way to you.
I am not a religious man in the church going sense although spiritually I am open to life and the greater universe. Angels walk the earth in many forms and sometimes even when we do not realize we are touched by them each and every day.
Friends come and go in our lifetime and it is the test of true friendship when the unexpected like cancer hits the front door. I have found that some of my friends have disappeared from my life since my diagnosis and other friends have taken the time to support and care.
I am certainly not angry although yes sometimes disappointed in the reactions of some people but I guess it is their own fears that they are running away from.
Today I wanted to take the time to thank everyone who has supported me in some way over the last nine months. I am very grateful to all my family and friends for loving and supporting me during my journey.
Thank you so very much….
I am not a religious man in the church going sense although spiritually I am open to life and the greater universe. Angels walk the earth in many forms and sometimes even when we do not realize we are touched by them each and every day.
Friends come and go in our lifetime and it is the test of true friendship when the unexpected like cancer hits the front door. I have found that some of my friends have disappeared from my life since my diagnosis and other friends have taken the time to support and care.
I am certainly not angry although yes sometimes disappointed in the reactions of some people but I guess it is their own fears that they are running away from.
Today I wanted to take the time to thank everyone who has supported me in some way over the last nine months. I am very grateful to all my family and friends for loving and supporting me during my journey.
Thank you so very much….
Marrow cells
The last chemo has been delayed until the 5th of May because my bone marrow cells are too low.
This is something new for me…or they just have not informed me that this has been a previous problem.
I do not feel any different than usual so that is a positive and I am certainly not going to worry because nothing is going to get me down this week. I am going to ride on this wave of happiness for as long as possible.
This is something new for me…or they just have not informed me that this has been a previous problem.
I do not feel any different than usual so that is a positive and I am certainly not going to worry because nothing is going to get me down this week. I am going to ride on this wave of happiness for as long as possible.
Quater pounder cheeese
Today I had an appointment with my Urologist and he was very happy with the results of the scan.
In three months time he has arranged another CT scan for the total body instead of only the torso. These scans will continue for five years every three to four months for the first two years and then every six months for the last three years.
Having recently attended a Urology conference he passed on some tips to me to keep me in optimum health. I am to supplement my diet with vitamin B the (whole range) and to eat fresh food instead of processed, also to have regular exercise with the aim of reducing body fat to a minimum.
Everything in moderation I guess….oh I do love the odd quarter pounder cheese though.
In three months time he has arranged another CT scan for the total body instead of only the torso. These scans will continue for five years every three to four months for the first two years and then every six months for the last three years.
Having recently attended a Urology conference he passed on some tips to me to keep me in optimum health. I am to supplement my diet with vitamin B the (whole range) and to eat fresh food instead of processed, also to have regular exercise with the aim of reducing body fat to a minimum.
Everything in moderation I guess….oh I do love the odd quarter pounder cheese though.
Happy chappy
The days building up to my appointment today for the results of the CT scan were very difficult although this weekend I had a feeling of peace. A feeling that everything will be ok and this gave also a feeling of calm.
Today in the waiting room of course my stomach was once again turning with nerves until my oncologist called me in.
The scan was clear which is fantastic news….nothing could be seen except a small bladder stone in my new bladder which is harmless.
I was taken on a step by step tour of my body looking at each section of the CT scan. Even the cysts that I had in my right kidney have disappeared which is fabulous.
My last chemo has been delayed because of low blood counts. Hopefully it can begin this Thursday for the small chemo and the big chemo Friday with a one night stay.
Once the chemo has finished in three weeks I don’t have to return to oncology for three months which is excellent news.
So as you can imagine I am a very happy chappy today and will celebrate this evening with a few glasses of wine.
Today in the waiting room of course my stomach was once again turning with nerves until my oncologist called me in.
The scan was clear which is fantastic news….nothing could be seen except a small bladder stone in my new bladder which is harmless.
I was taken on a step by step tour of my body looking at each section of the CT scan. Even the cysts that I had in my right kidney have disappeared which is fabulous.
My last chemo has been delayed because of low blood counts. Hopefully it can begin this Thursday for the small chemo and the big chemo Friday with a one night stay.
Once the chemo has finished in three weeks I don’t have to return to oncology for three months which is excellent news.
So as you can imagine I am a very happy chappy today and will celebrate this evening with a few glasses of wine.
Thick twigs
Hey the weekend has arrived and apparently we are in for some warmer weather especially on Sunday.
Today is blustery although dry which is great for getting out and about. The weekend shopping has already been done so all I have to do now is relax and enjoy.
Yesterday I collected bag loads of compost from the local council rubbish tip which is free. I did not have a very good experience last year with it as it was mainly thick twigs. This year it is very fine and crumbly…perfect for giving my borders a good mulching.
My web log is developing into more than just my journey with bladder cancer as I have found lately that I am touching on things that have affected me in the past.
It is obvious I have not really found a place in my heart and mind for many things so I will be slowly expressing these experiences over the coming months.
Today is blustery although dry which is great for getting out and about. The weekend shopping has already been done so all I have to do now is relax and enjoy.
Yesterday I collected bag loads of compost from the local council rubbish tip which is free. I did not have a very good experience last year with it as it was mainly thick twigs. This year it is very fine and crumbly…perfect for giving my borders a good mulching.
My web log is developing into more than just my journey with bladder cancer as I have found lately that I am touching on things that have affected me in the past.
It is obvious I have not really found a place in my heart and mind for many things so I will be slowly expressing these experiences over the coming months.
Fingers to keyboard
Working around the house and keeping busy running errands and gardening do help to restore the peace in my mind. The problem is when I stop doing what I am doing the unbearable thoughts seep into my psyche.
It is just a waiting game and sometimes I don’t think I can hold on before I flip. When the still moments arise the stress headaches follow and I feel sick to my stomach with the fear of bad news on Monday.
I totally understand that we are all mortal and that it will pass our way at some point. Often I wish that I will be spared the pain of dying of cancer and that I will be taken suddenly in my sleep or some other quick painless ending.
In my experience dying has been very traumatic watching my best friend Alan slip away because of meningitis and having life support turned off.
Having a vigil at my mum’s bedside in the hospice watching her slip away because of the ravages of breast cancer. Gathered we were as a family watching her take her last breath destroyed us in many ways as it cripples one’s soul.
My grandma also died of cancer and on her death bed she fought for every last painful breath and all we could do was to stand back and watch it happen totally helpless.
The hardest thing I have ever had to do is to watch my loving partner Marcel fade away as the life support machine was turned off. We shared 9 wonderful years together and that can never be taken away. Marcel died quickly and pain free because of an aneurism although this certainly does not make it easier for loved ones left behind.
My web log is a good way to just express my thoughts and sometimes they will be negative or positive. Writing freely allows me to free the thoughts from my mind so that I can move on. I really have no intention of upsetting anyone reading this web log and hope it will give an insight into my daily routine and thought processes.
I find often when I am feeling low or visiting dark places pressing fingers to keyboard and disposing of my worries in this way helps immensely.
It is just a waiting game and sometimes I don’t think I can hold on before I flip. When the still moments arise the stress headaches follow and I feel sick to my stomach with the fear of bad news on Monday.
I totally understand that we are all mortal and that it will pass our way at some point. Often I wish that I will be spared the pain of dying of cancer and that I will be taken suddenly in my sleep or some other quick painless ending.
In my experience dying has been very traumatic watching my best friend Alan slip away because of meningitis and having life support turned off.
Having a vigil at my mum’s bedside in the hospice watching her slip away because of the ravages of breast cancer. Gathered we were as a family watching her take her last breath destroyed us in many ways as it cripples one’s soul.
My grandma also died of cancer and on her death bed she fought for every last painful breath and all we could do was to stand back and watch it happen totally helpless.
The hardest thing I have ever had to do is to watch my loving partner Marcel fade away as the life support machine was turned off. We shared 9 wonderful years together and that can never be taken away. Marcel died quickly and pain free because of an aneurism although this certainly does not make it easier for loved ones left behind.
My web log is a good way to just express my thoughts and sometimes they will be negative or positive. Writing freely allows me to free the thoughts from my mind so that I can move on. I really have no intention of upsetting anyone reading this web log and hope it will give an insight into my daily routine and thought processes.
I find often when I am feeling low or visiting dark places pressing fingers to keyboard and disposing of my worries in this way helps immensely.
No more needles
Well the CT scan is out of the way and luckily they did not put contrast fluid into my anus this time which spared embarrassment and no running to the toilet which was great……
So now it is a waiting game until Monday which is torture to be honest with you. My mind will be seriously active until the results come in. I wish they could give the results much sooner.
I had blood taken today at the hospital also because my levels were very low, so I will call the hospital shortly to check with the chief chemo nurse.
I was chatting earlier to a friend about how it never gets any easier having injections for chemo or for drawing blood. In fact it gets worse and we have both developed a kind of phobia about it. I start to hyperventilate just before they put the needle in and then hold my breath until it is over. It makes me feel sick to my stomach I guess because they have so much difficulty finding a vein. I always end up have a bruise also for a few weeks.
Well no more needles for another week until chemo start’s again next Tuesday…..
So now it is a waiting game until Monday which is torture to be honest with you. My mind will be seriously active until the results come in. I wish they could give the results much sooner.
I had blood taken today at the hospital also because my levels were very low, so I will call the hospital shortly to check with the chief chemo nurse.
I was chatting earlier to a friend about how it never gets any easier having injections for chemo or for drawing blood. In fact it gets worse and we have both developed a kind of phobia about it. I start to hyperventilate just before they put the needle in and then hold my breath until it is over. It makes me feel sick to my stomach I guess because they have so much difficulty finding a vein. I always end up have a bruise also for a few weeks.
Well no more needles for another week until chemo start’s again next Tuesday…..
Pretty crispy
I have just had my ½ tablet of metoclopramide to prevent sickness and the first bottle of telebrix contrast fluid. I put the telebrix in the fridge overnight to cool and added syrup before drinking which did help to get it down.
The next bottle of telebrix will be in an hour and then I am done until the next bottle just before the scan. Now I know why they give an anti sickness medicine before drinking the fluid because the taste just makes you wretch.
I woke up today to frosty fields so it is pretty crispy outside today, the sun is shining though so the temp should rise quickly.
On the weather channel today they mentioned we are in for an easterly wind for a couple of days which we have not had for a long time. That will make things feel colder than it really is this week…..
I have not been up this early for a few months because the chemo normally keeps me in bed until late morning because of tiredness. It is a nice change though to hear all the birds singing in the trees and calling out to each other.
The next bottle of telebrix will be in an hour and then I am done until the next bottle just before the scan. Now I know why they give an anti sickness medicine before drinking the fluid because the taste just makes you wretch.
I woke up today to frosty fields so it is pretty crispy outside today, the sun is shining though so the temp should rise quickly.
On the weather channel today they mentioned we are in for an easterly wind for a couple of days which we have not had for a long time. That will make things feel colder than it really is this week…..
I have not been up this early for a few months because the chemo normally keeps me in bed until late morning because of tiredness. It is a nice change though to hear all the birds singing in the trees and calling out to each other.
Good vibes
Well I had a fabulous day today weeding the garden on my hands and knees with the earth between my fingers and that is the best thing ever.
I must say the garden is looking pretty good at the moment….it is coming along leaps and bounds. I am happy I have had the energy recently to get busy with it and the rewards are well worth the toil.
The cats love the new pond which they use as a new water drinking station.
Keeping busy today kept me out of mischief and my mind was in a good place a kind of meditation which was very relaxing. My mind wanders to many places and it is just a feeling of watching them pass by.
Tomorrow is scan day and I have two bottles of contrast fluid to drink, one bottle at 07:30 and the other at 08:30 with ½ a tablet.
When I arrive at the appointment they will give me another bottle to drink just before they start. They will insert an IV for more contrast fluid for one of the scans and insert a tube in my anus that will feed more contrast fluid inside of me for another scan.
It takes about 20-30 minutes to complete the scans then it is a run to the toilet to get the fluid out of my bum.
Unfortunately it will be long wait for the results which are on Monday.
Please send good vibes my direction for a clear scan result……
I must say the garden is looking pretty good at the moment….it is coming along leaps and bounds. I am happy I have had the energy recently to get busy with it and the rewards are well worth the toil.
The cats love the new pond which they use as a new water drinking station.
Keeping busy today kept me out of mischief and my mind was in a good place a kind of meditation which was very relaxing. My mind wanders to many places and it is just a feeling of watching them pass by.
Tomorrow is scan day and I have two bottles of contrast fluid to drink, one bottle at 07:30 and the other at 08:30 with ½ a tablet.
When I arrive at the appointment they will give me another bottle to drink just before they start. They will insert an IV for more contrast fluid for one of the scans and insert a tube in my anus that will feed more contrast fluid inside of me for another scan.
It takes about 20-30 minutes to complete the scans then it is a run to the toilet to get the fluid out of my bum.
Unfortunately it will be long wait for the results which are on Monday.
Please send good vibes my direction for a clear scan result……
Consciously
I am putting off planning things this year because of future medical exams and tests. My partner has booked off periods of the year for holidays but I am just very hesitant about booking anything in case of bad results.
I know myself that this is a negative view on life, as if I am expecting bad news to come my way. I suppose for now leading my life day by day since my diagnosis has been the norm for me.
I do cherish every new day when I wake up and try to live more consciously which is much more relaxing, I guess in a way relearning to use my senses in a grateful way.
Reading the book “The Secret” many months ago, given to me by my aunty Sha, has helped me immensely. It was my bible during my hospital stay for the Radical Cystectomy and I read it often when I had the energy to open the pages.
It really is a life style change that must be included in daily routines for it to work successfully, just like maintaining eating and exercise plans to stay healthy.
During my low periods I have slipped back into old unhealthy routines and life is just not pleasant when this happens. The book “The Secret” has been sitting on my mantle piece staring at me each day and in a way calling for me to pick it up. I put off picking this book up for many weeks because in a way I felt a kind of anger towards it. The anger is really my anger at the cancer and my impatience for results and not the book.
In the book it advises how your positive thoughts can breed many more positive thoughts and enhance your life in many ways. Of course you learn that the opposite is true when thinking negatively this will in turn increase the negative thoughts also.
So basically we are what we think and the best course to follow is the positive line of thinking which makes common sense. It is a constant work in progress however and perfecting these theories is of course impossible. Creating the balance just like everything in life has to be the aim for me at least.
Having negative thoughts is also part of our psychological makeup, learning how to listen to them and deal with them and turn them into a positive is the task at hand. I know I certainly feel good about myself mentally and physically when thinking positively and feel the opposite when those negative thoughts slide in.
Our bodies and minds give us lots of signs each and every day and it is up to me to read them. Living consciously certainly is helping me to be more aware so that I can keep the negativity at bay....
I know myself that this is a negative view on life, as if I am expecting bad news to come my way. I suppose for now leading my life day by day since my diagnosis has been the norm for me.
I do cherish every new day when I wake up and try to live more consciously which is much more relaxing, I guess in a way relearning to use my senses in a grateful way.
Reading the book “The Secret” many months ago, given to me by my aunty Sha, has helped me immensely. It was my bible during my hospital stay for the Radical Cystectomy and I read it often when I had the energy to open the pages.
It really is a life style change that must be included in daily routines for it to work successfully, just like maintaining eating and exercise plans to stay healthy.
During my low periods I have slipped back into old unhealthy routines and life is just not pleasant when this happens. The book “The Secret” has been sitting on my mantle piece staring at me each day and in a way calling for me to pick it up. I put off picking this book up for many weeks because in a way I felt a kind of anger towards it. The anger is really my anger at the cancer and my impatience for results and not the book.
In the book it advises how your positive thoughts can breed many more positive thoughts and enhance your life in many ways. Of course you learn that the opposite is true when thinking negatively this will in turn increase the negative thoughts also.
So basically we are what we think and the best course to follow is the positive line of thinking which makes common sense. It is a constant work in progress however and perfecting these theories is of course impossible. Creating the balance just like everything in life has to be the aim for me at least.
Having negative thoughts is also part of our psychological makeup, learning how to listen to them and deal with them and turn them into a positive is the task at hand. I know I certainly feel good about myself mentally and physically when thinking positively and feel the opposite when those negative thoughts slide in.
Our bodies and minds give us lots of signs each and every day and it is up to me to read them. Living consciously certainly is helping me to be more aware so that I can keep the negativity at bay....
Rain drops
The rain drops are now starting to fall and I am so happy I had the most of the day in the garden in sunny weather.
The summer flowers have now been planted in the new border so they should start to fluff out over the next few weeks. They are annuals so they come back every year so they can take a little cold weather at night.
Today a hole was dug for the pond which is just a small round one holding 65 litres enough for some water flowers and grass. This should encourage the frogs and they do a great job at munching all the insects including slugs so this should help the hosta leaves stay whole hopefully.
I have just had a lovely hot shower to soothe my aching back from the digging and pottering around in the garden. Just in time as now dark clouds are hovering and the rain drops are starting to fall.
The summer flowers have now been planted in the new border so they should start to fluff out over the next few weeks. They are annuals so they come back every year so they can take a little cold weather at night.
Today a hole was dug for the pond which is just a small round one holding 65 litres enough for some water flowers and grass. This should encourage the frogs and they do a great job at munching all the insects including slugs so this should help the hosta leaves stay whole hopefully.
I have just had a lovely hot shower to soothe my aching back from the digging and pottering around in the garden. Just in time as now dark clouds are hovering and the rain drops are starting to fall.
Crossover
Today was a wonderful sunny day again and we had a lovely visit to the in-laws and saw all the kids too including baby Jamie and he is growing so quickly….
I called in at the garden centre in Middleburg and it was absolutely manic with people buying plants, trees and flowers. Luckily all I needed was some cat stones and dog food so it was a case of collecting the items and going to the checkout. I would have loved to have had a roam about but much prefer it during the week when it is nice and quiet.
It would be great if it stays dry tomorrow so that I can have a good potter in the garden and prepare the ground for planting next week.
As the days lead up to the CT scan I am becoming more anxious about the result. It will be a five day wait before I have the result also.
I am not sure how I should be feeling about it actually as it still feels like I am watching from a distance as my destiny unravels.
Obviously I am going to have two outcomes the first being that the scan is clear and then I continue with the last chemo and wait for another CT scan in July. Option two and my worse nightmare is that the cancer has spread and then I will stop the chemo and take a look at my options. I am aware that if it has spread it will likely be confirmed as a terminal illness and that is the crossover I fear most.
I have already been through so much since my diagnosis last July and not sure if I have the courage to take any more bad news gracefully.
My thoughts have wondered to those dark places often on this journey and each time I pick myself up and dust myself off and continue to do the best I can with dignity....
I called in at the garden centre in Middleburg and it was absolutely manic with people buying plants, trees and flowers. Luckily all I needed was some cat stones and dog food so it was a case of collecting the items and going to the checkout. I would have loved to have had a roam about but much prefer it during the week when it is nice and quiet.
It would be great if it stays dry tomorrow so that I can have a good potter in the garden and prepare the ground for planting next week.
As the days lead up to the CT scan I am becoming more anxious about the result. It will be a five day wait before I have the result also.
I am not sure how I should be feeling about it actually as it still feels like I am watching from a distance as my destiny unravels.
Obviously I am going to have two outcomes the first being that the scan is clear and then I continue with the last chemo and wait for another CT scan in July. Option two and my worse nightmare is that the cancer has spread and then I will stop the chemo and take a look at my options. I am aware that if it has spread it will likely be confirmed as a terminal illness and that is the crossover I fear most.
I have already been through so much since my diagnosis last July and not sure if I have the courage to take any more bad news gracefully.
My thoughts have wondered to those dark places often on this journey and each time I pick myself up and dust myself off and continue to do the best I can with dignity....
Propagator
I think it is gong to be a crazy day for gardeners that buy summer flowers because all of the garden centres and DIY shops are competing to sell them at rock bottom prices today.
So later I guess many of us garden hobbyists will be preparing beds for summer planting. The chance of frost is still with us though so being cautious is in order I think.
I bought some annuals last week but daren’t take the risk of planting them until it gets a little warmer at night. They are snugly and warm in my shed until that happens….I am so excited about getting them in the ground to watch them develop.
I am going to try strawberries in hanging baskets this year which I am told is a great way of growing them. It keeps the strawberries off the ground keeping them clean and away from the bugs having a nibble.
My strawberries are doing really well at the moment because they have spent the last month in a warm propagator to give them a good head start…..
So later I guess many of us garden hobbyists will be preparing beds for summer planting. The chance of frost is still with us though so being cautious is in order I think.
I bought some annuals last week but daren’t take the risk of planting them until it gets a little warmer at night. They are snugly and warm in my shed until that happens….I am so excited about getting them in the ground to watch them develop.
I am going to try strawberries in hanging baskets this year which I am told is a great way of growing them. It keeps the strawberries off the ground keeping them clean and away from the bugs having a nibble.
My strawberries are doing really well at the moment because they have spent the last month in a warm propagator to give them a good head start…..
The guilt enveloped me
The weekends seem to be approaching faster and faster even though I spend most of my time at home. You would think that time would be passing really slowly for me as I potter about doing my daily routine.
The light evenings are really lovely and each evening I watch the sun set a little further down the field each day.
My cats are enjoying having the freedom to roam outside in the garden at the moment…I was pretty hesitant about letting them go outside as the road next to the house is quite busy at certain times of the day.
The speed limit is on 30 but many road users far exceed this limit which is quite frightening sometimes as it not only a danger but a noise nuisance because of the cobbled road. I guess I had to let my daddy instincts go a little and let the cats find their own way in this world.
It is so funny to see them jumping around trying to catch flies ands bees and having fun playing with each other. It really has kept the cat hair problem at bay in the house as most of the loose hairs are flying away in the wind J
One more day of this lovely sunny weather and then we are in for a spot of rain on Sunday…which actually we do need as the ground is pretty dry and all the new shoots and buds need a good drink to open up and develop.
My lawns have been mowed and spiked and a good sprinkle of fertilizer thrown over them so the rain is necessary to get that working so that the lawns can get nourished and green up.
My mind is active with thoughts of my appointment on Wednesday for my CT scan. It doesn’t matter how hard I try to remain positive regarding the outcome, the waves of negativity creep in. I guess this is my own self protection to prepare my mind body and spirit for any eventual outcome.
I truly hope of course that the results will be good and then I can continue the fight to stay healthy. It will be a constant fight though for the next five years until the oncologist gives an all clear.
As the type of bladder cancer I have is the aggressive variety I will be kept under constant vigil having CT scans every 3-4 months in the first year and this will progress to 6 monthly scans and the third fourth and fifth year being yearly.
My hopes and dreams are very strong and I am certainly not ready to give up on my chance of survival because I want it so much. Keeping it together sometimes is hard although certainly part of the phases and cycles of this journey.
The trials and tribulations of my cancer journey being written here on my log have certainly helped me so much. It is allowing me to understand myself so much more also and my heart and mind has never been so open.
Loving me…. has been one lesson I have started to learn over the last 6 months as I concentrate on my own needs first before helping others. It is a hard lesson to learn and is ongoing as I try not to let old habits slip back in. In the beginning it felt strange as feelings of selfishness and guilt enveloped me. These consuming thoughts have never helped the situation and can only stunt my growth as a person….one day I will be at peace with myself.....
The light evenings are really lovely and each evening I watch the sun set a little further down the field each day.
My cats are enjoying having the freedom to roam outside in the garden at the moment…I was pretty hesitant about letting them go outside as the road next to the house is quite busy at certain times of the day.
The speed limit is on 30 but many road users far exceed this limit which is quite frightening sometimes as it not only a danger but a noise nuisance because of the cobbled road. I guess I had to let my daddy instincts go a little and let the cats find their own way in this world.
It is so funny to see them jumping around trying to catch flies ands bees and having fun playing with each other. It really has kept the cat hair problem at bay in the house as most of the loose hairs are flying away in the wind J
One more day of this lovely sunny weather and then we are in for a spot of rain on Sunday…which actually we do need as the ground is pretty dry and all the new shoots and buds need a good drink to open up and develop.
My lawns have been mowed and spiked and a good sprinkle of fertilizer thrown over them so the rain is necessary to get that working so that the lawns can get nourished and green up.
My mind is active with thoughts of my appointment on Wednesday for my CT scan. It doesn’t matter how hard I try to remain positive regarding the outcome, the waves of negativity creep in. I guess this is my own self protection to prepare my mind body and spirit for any eventual outcome.
I truly hope of course that the results will be good and then I can continue the fight to stay healthy. It will be a constant fight though for the next five years until the oncologist gives an all clear.
As the type of bladder cancer I have is the aggressive variety I will be kept under constant vigil having CT scans every 3-4 months in the first year and this will progress to 6 monthly scans and the third fourth and fifth year being yearly.
My hopes and dreams are very strong and I am certainly not ready to give up on my chance of survival because I want it so much. Keeping it together sometimes is hard although certainly part of the phases and cycles of this journey.
The trials and tribulations of my cancer journey being written here on my log have certainly helped me so much. It is allowing me to understand myself so much more also and my heart and mind has never been so open.
Loving me…. has been one lesson I have started to learn over the last 6 months as I concentrate on my own needs first before helping others. It is a hard lesson to learn and is ongoing as I try not to let old habits slip back in. In the beginning it felt strange as feelings of selfishness and guilt enveloped me. These consuming thoughts have never helped the situation and can only stunt my growth as a person….one day I will be at peace with myself.....
pottering about
I certainly took advantage of this lovely weather and my energy levels today. I have been non-stop all day pottering about in the garden which has been great.
I am feeling pretty good and now need a long soak in a bath to relax with a glass of wine….unfortunately though I have no bath so a long hot shower will have to do....
I am feeling pretty good and now need a long soak in a bath to relax with a glass of wine….unfortunately though I have no bath so a long hot shower will have to do....
Thursday 10 July 2008
Three goes
It took three goes to get a good vein but eventually my chemo nurse managed. I feel so sorry for them when they don’t get it first time because you can see that it hurts them too knowing they are causing discomfort.
I received 75% of the regular amount of chemo because my blood levels were too low to receive the full dose. My oncologist has requested that I have my blood checked next week to make sure the levels are returning to normal. They can give me an IV of blood platelets if too low to boost my system.
I am now finally on a rest period from chemo and hope I have enough energy to enjoy this lovely sunny weather we are having.
I spent the last couple of hours in the garden planting some bushes next to my swing chair to add a bit of privacy….
Once the cold nights have past and we have little chance of freezing during the night I can start to plant up some vegetables which I am really looking forward to….
I received 75% of the regular amount of chemo because my blood levels were too low to receive the full dose. My oncologist has requested that I have my blood checked next week to make sure the levels are returning to normal. They can give me an IV of blood platelets if too low to boost my system.
I am now finally on a rest period from chemo and hope I have enough energy to enjoy this lovely sunny weather we are having.
I spent the last couple of hours in the garden planting some bushes next to my swing chair to add a bit of privacy….
Once the cold nights have past and we have little chance of freezing during the night I can start to plant up some vegetables which I am really looking forward to….
Good thoughts
Tomorrow will be the last chemo of the third round and then I have a good ten day rest before the last and final fourth round.
I have brought the appointment date of my CT Scan forward to the 16th April because I just cannot wait until the end of the month and what is a couple of weeks anyhow.
My Urologist requested the CT scan for me as he thought it was time to have a look and see what was going on. The last CT scan was in November 2007 so it was four and a half months ago.
I want to remain positive but of course it is eating me up inside as to what the result will be. It does not matter how much I visualize good health and make future plans in my head. The deep dark thoughts always find a way to cloud over my mood from time to time and sometimes it takes a while to kick them away….
I read an interesting article on chemo brain the other day which I will post at the bottom of my log for those interested….
It really makes me feel a lot better to know that my thought processes have been compromised because of the treatment.
Please send good thoughts to the chemo room tomorrow so that when they will find a good vein and the chemo will be but a dream…..
I have brought the appointment date of my CT Scan forward to the 16th April because I just cannot wait until the end of the month and what is a couple of weeks anyhow.
My Urologist requested the CT scan for me as he thought it was time to have a look and see what was going on. The last CT scan was in November 2007 so it was four and a half months ago.
I want to remain positive but of course it is eating me up inside as to what the result will be. It does not matter how much I visualize good health and make future plans in my head. The deep dark thoughts always find a way to cloud over my mood from time to time and sometimes it takes a while to kick them away….
I read an interesting article on chemo brain the other day which I will post at the bottom of my log for those interested….
It really makes me feel a lot better to know that my thought processes have been compromised because of the treatment.
Please send good thoughts to the chemo room tomorrow so that when they will find a good vein and the chemo will be but a dream…..
My hips can handle it
I can move again which is a relief as yesterday was such an intense decline.
Paracetamol certainly has helped me with the pain although excruciating at times yesterday…hard to believe this was a side effect from chemo.
Today has been slow but I can walk again as long as I have no sudden movements in direction my hips can handle it.
I have been so lucky that this has not effected me before now and certainly count my blessings for that because it really shocked me how quickly this came on…..what a drama!!
Paracetamol certainly has helped me with the pain although excruciating at times yesterday…hard to believe this was a side effect from chemo.
Today has been slow but I can walk again as long as I have no sudden movements in direction my hips can handle it.
I have been so lucky that this has not effected me before now and certainly count my blessings for that because it really shocked me how quickly this came on…..what a drama!!
Breathe deeply
The infuse for the chemo is getting harder eat time, you would think that I would be immune to a few needles every week but it certainly does not get any easier. The chemo nurses are struggling to find good veins and it hurts if they don’t succeed as they have to start all over again.
Anyhow the chemo is now running through my system hopefully doing a great job of zapping any cancer cells.
This week has been a struggle and yet again it took about a week to feel like I can tread water again and breathe deeply.
My emotions are running wild and fear for a burst out this week which actually will be good for me if that happens. A few tears to wash away my sorrows always helps settle things and put things in perspective. It will make me feel real again instead of trying to come off hard in a way that things are not bothering me.
It is just when I am on the verge of a good old weep my body goes into a self protect mode and washes the emotional wave away and the tears stay at bay. Oh well they will come in good time.
Anyhow the chemo is now running through my system hopefully doing a great job of zapping any cancer cells.
This week has been a struggle and yet again it took about a week to feel like I can tread water again and breathe deeply.
My emotions are running wild and fear for a burst out this week which actually will be good for me if that happens. A few tears to wash away my sorrows always helps settle things and put things in perspective. It will make me feel real again instead of trying to come off hard in a way that things are not bothering me.
It is just when I am on the verge of a good old weep my body goes into a self protect mode and washes the emotional wave away and the tears stay at bay. Oh well they will come in good time.
¾
So I am ¾ of the way through nearly with just 6 more chemo’s to be injected and then I will have a CT scan to check my body for any spread of cancer.
I am struggling at the moment as I recover from the last big chemo last Wednesday and hopefully tomorrow will be a better day.
It is a strange feeling of tiredness and out of body experiences I have been having which have been weird. I certainly have been listening to my bodies needs though and not pushing myself too hard.
I maybe just getting used to the crappy feelings it gives now a kind of acceptance which I know has a light at the end to feeling good once more.
The weekend has flown by so quickly and all I have done is take it easy and be pampered by my partner which has been bliss for a change….
Thank you for all your help and support in these last difficult days.
I am struggling at the moment as I recover from the last big chemo last Wednesday and hopefully tomorrow will be a better day.
It is a strange feeling of tiredness and out of body experiences I have been having which have been weird. I certainly have been listening to my bodies needs though and not pushing myself too hard.
I maybe just getting used to the crappy feelings it gives now a kind of acceptance which I know has a light at the end to feeling good once more.
The weekend has flown by so quickly and all I have done is take it easy and be pampered by my partner which has been bliss for a change….
Thank you for all your help and support in these last difficult days.
Injections and viagra
I am taking it easy at the moment as the Cisplatinum chemo takes hold and wipes the energy from me. The last few days have been like a dreamlike state and I have been unable to concentrate very well on anything.
On Friday I had an appointment with my Urologist to check the strength of my urine flow which was excellent.
The appointment was also for directions on how to use the injections and medication to gain an erection. It was pretty straight forward and the needle is tiny. The Urologist started on a very low dose and injected the first one which goes in at the base of the penis. It was a strange feeling but certainly not painful.
I was then told to go home and the erection would arise so to speak within 15 minutes which it did. It was a soft erection so I now have to play around and increase the dose until I reach the perfect erection...lol
Viagra has also been prescribed which I can combine the two until I can find a happy medium. It will just take a few minutes preparation before any sexual act.
I thought it would be strange to talk about it but I feel absolutely fine about it. It is just the way it is and I cannot change a thing.
On Friday I had an appointment with my Urologist to check the strength of my urine flow which was excellent.
The appointment was also for directions on how to use the injections and medication to gain an erection. It was pretty straight forward and the needle is tiny. The Urologist started on a very low dose and injected the first one which goes in at the base of the penis. It was a strange feeling but certainly not painful.
I was then told to go home and the erection would arise so to speak within 15 minutes which it did. It was a soft erection so I now have to play around and increase the dose until I reach the perfect erection...lol
Viagra has also been prescribed which I can combine the two until I can find a happy medium. It will just take a few minutes preparation before any sexual act.
I thought it would be strange to talk about it but I feel absolutely fine about it. It is just the way it is and I cannot change a thing.
Big melt
It may sound strange to talk about my waterworks but it means a lot if you struggle to pee for so long.
Each day has been an improvement in my flow which has increased dramatically and I can now empty my bladder in seconds saving so much time and energy.
The pain has also subsided and I only have a little twinge now and again so the healing process is far speedier than expected.
Tomorrow starts the third round of chemo and I am certainly ready for it this time with the awareness that the other issue mentioned above has resolved.
It will be a small chemo for 2 hours and Wednesday I check in for one night for the big chemo which I really hope will not be as hard as last month. My oncologist has prescribed more medication to counteract any yucky feelings and I can take them as and when required.
Last night started the snow showers and we had amazingly big flakes of snow falling for several hours. Unfortunately it did not last long as the sun has been shining today with the occasional snow shower but the big melt is on.
Each day has been an improvement in my flow which has increased dramatically and I can now empty my bladder in seconds saving so much time and energy.
The pain has also subsided and I only have a little twinge now and again so the healing process is far speedier than expected.
Tomorrow starts the third round of chemo and I am certainly ready for it this time with the awareness that the other issue mentioned above has resolved.
It will be a small chemo for 2 hours and Wednesday I check in for one night for the big chemo which I really hope will not be as hard as last month. My oncologist has prescribed more medication to counteract any yucky feelings and I can take them as and when required.
Last night started the snow showers and we had amazingly big flakes of snow falling for several hours. Unfortunately it did not last long as the sun has been shining today with the occasional snow shower but the big melt is on.
Thank you
What a difference a day can make…I woke up this morning and paid a visit to the toilet and had the best pee since my operation last September.
I was a little worried yesterday as I could only manage dribbles and at the back of my mind assumed the operation had not been a great success. It must have just been swollen in my urethra because of the probe during the operation.
On Friday I have a check up with the Urologist and I am certainly going to give him a hand and a big thank you. I have struggled for the last 7 months to have a normal pee as it took roughly 10-15mins to empty my bladder and today it emptied in just a few seconds.
It is amazing what we take for granted in this world and I still do take many things for granted and it is not until these norms are taken away that we realize what we have lost.
The back pain I have suffered must have been related to the pressing and pushing I have been doing to try to squeeze out my urine….
Thank you so much Dr. de Poorter you really have changed my life for the better and my spirit has lifted once more.
I was a little worried yesterday as I could only manage dribbles and at the back of my mind assumed the operation had not been a great success. It must have just been swollen in my urethra because of the probe during the operation.
On Friday I have a check up with the Urologist and I am certainly going to give him a hand and a big thank you. I have struggled for the last 7 months to have a normal pee as it took roughly 10-15mins to empty my bladder and today it emptied in just a few seconds.
It is amazing what we take for granted in this world and I still do take many things for granted and it is not until these norms are taken away that we realize what we have lost.
The back pain I have suffered must have been related to the pressing and pushing I have been doing to try to squeeze out my urine….
Thank you so much Dr. de Poorter you really have changed my life for the better and my spirit has lifted once more.
Cold and frosty
This morning I called the oncology office for the results of my blood and the levels were good enough so that the operation may go ahead tomorrow as planned. Now I am feeling a little nervous about it and just want to get it over and done with.
I will be so happy to have the opening from my bladder to the urethra enlarged to enable me to pee normally. At the moment it takes a good ten minutes sometimes longer just to empty my new bladder.
The growth inside my bladder can hopefully be removed also at the same time so that I don’t have to go back for another operation.
Today, two friends Angelique and Lucy came round for coffee and a chat to catch up and it was so lovely to see them and I really appreciate that as my social contact has decreased since stopping work. Thank you so much for the Easter eggs!!
It looks like this Easter will be cold and frosty…lets just hope the sun shines also at some point between the heavy rain showers forecast.
I will be so happy to have the opening from my bladder to the urethra enlarged to enable me to pee normally. At the moment it takes a good ten minutes sometimes longer just to empty my new bladder.
The growth inside my bladder can hopefully be removed also at the same time so that I don’t have to go back for another operation.
Today, two friends Angelique and Lucy came round for coffee and a chat to catch up and it was so lovely to see them and I really appreciate that as my social contact has decreased since stopping work. Thank you so much for the Easter eggs!!
It looks like this Easter will be cold and frosty…lets just hope the sun shines also at some point between the heavy rain showers forecast.
White frosting
Looking after 5 cats and a dog is a full time job for me at the moment as I seem to spend most of the day cleaning up after them.
Spring is here so the cats are malting hair everywhere and I am hovering and dusting daily now. At least it keeps me busy and it won’t be long before they are playing in the garden when it warms up a bit more.
It is a bit of a comedy act when the Hoover comes out and Bo Bo the dog gets all territorial and attacks the brushes and the cats scarper because of the noise. But then when I am finished and start mopping the floor the cats reappear and all eyes are on me with every cat head swishing from side to side as if they were watching a tennis match….it is so funny.
I am going to start adding some photo’s to add a bit of colour to my web log…I have taken loads of photo’s this winter of the surrounding area when we had a week of icy weather when all the trees were covered in white frosting.
As soon as my spring bulbs start to flower I will takes loads of photo’s which should add a splash of colour each time I do a web log. So yes it will be a horticultural theme ...
Spring is here so the cats are malting hair everywhere and I am hovering and dusting daily now. At least it keeps me busy and it won’t be long before they are playing in the garden when it warms up a bit more.
It is a bit of a comedy act when the Hoover comes out and Bo Bo the dog gets all territorial and attacks the brushes and the cats scarper because of the noise. But then when I am finished and start mopping the floor the cats reappear and all eyes are on me with every cat head swishing from side to side as if they were watching a tennis match….it is so funny.
I am going to start adding some photo’s to add a bit of colour to my web log…I have taken loads of photo’s this winter of the surrounding area when we had a week of icy weather when all the trees were covered in white frosting.
As soon as my spring bulbs start to flower I will takes loads of photo’s which should add a splash of colour each time I do a web log. So yes it will be a horticultural theme ...
Peek and poke
I just popped over to the local hospital to get blood drawn to assess if levels are high enough for the operation Thursday. Tomorrow morning I will call the oncology assistant for the results.
Two days and counting for the peek and poke and hopefully resolve any bladder issues.
I have just cut the lawn for the first time this year, I was planning on doing it last week but never got round to it. It can be difficult when dodging rain clouds this time of year. The smell of the fresh cut grass was wonderful and gave me a feeling that summer is on the way J
Happy Birthday to my sister in-law Nina …I think it is your birthday today…I am never quite sure as Shaun always gives me the wrong dates...lol so I blame him if I am late ...lol
Two days and counting for the peek and poke and hopefully resolve any bladder issues.
I have just cut the lawn for the first time this year, I was planning on doing it last week but never got round to it. It can be difficult when dodging rain clouds this time of year. The smell of the fresh cut grass was wonderful and gave me a feeling that summer is on the way J
Happy Birthday to my sister in-law Nina …I think it is your birthday today…I am never quite sure as Shaun always gives me the wrong dates...lol so I blame him if I am late ...lol
Birthdays
The rest period has been wonderful this time because of the extra week and it has given me time to fully recover and I am feeling vibrant and ready for the next hurdle later this week.
Tomorrow will be a quick visit to the blood lab to get my levels checked for the op this week and if all is well the op and chemo go ahead as planned.
On Saturday I became an Uncle again for my brother and sister in-laws baby boy born in the afternoon weighing in at 3 kilo’s and named Jamie….he is a little cutie J
The weekend was spent visiting baby Jamie and in-laws as my father in-law also celebrates a birthday today…..HAPPY BIRTHDAY KOOS!!
Tomorrow will be a quick visit to the blood lab to get my levels checked for the op this week and if all is well the op and chemo go ahead as planned.
On Saturday I became an Uncle again for my brother and sister in-laws baby boy born in the afternoon weighing in at 3 kilo’s and named Jamie….he is a little cutie J
The weekend was spent visiting baby Jamie and in-laws as my father in-law also celebrates a birthday today…..HAPPY BIRTHDAY KOOS!!
Mischief
The x-ray of my pelvic region is clear and what a relief that is to know it hasn’t spread to my pelvic bones. However the pain I experiencing is not pleasant and I will have to discuss this further with the urologist next week.
Apparently the operation I had in September last year could have made permanent damage to the pelvic nerve system. If this is true in my case then the pain in my right thigh and back could be because of this. I don’t want to rule it out though until the urologist has had a look at the growth in my new bladder.
I nearly forgot to call for the results of the x-ray and if it wasn’t for Kitty eager to know the results I wouldn’t have the result…thanks lovey!!
My mind was far away on distant tropical shores because I was busy laying a tiled floor the tiles of which donated by the JFK family, thanks sweeties. I have given the walk in cupboard walls a pastel blue colour and it is lovely.
This weather we are having is keeping me inside at the moment but at least I can catch up on odd jobs around the house.
I guess keeping me out of mischief…
Apparently the operation I had in September last year could have made permanent damage to the pelvic nerve system. If this is true in my case then the pain in my right thigh and back could be because of this. I don’t want to rule it out though until the urologist has had a look at the growth in my new bladder.
I nearly forgot to call for the results of the x-ray and if it wasn’t for Kitty eager to know the results I wouldn’t have the result…thanks lovey!!
My mind was far away on distant tropical shores because I was busy laying a tiled floor the tiles of which donated by the JFK family, thanks sweeties. I have given the walk in cupboard walls a pastel blue colour and it is lovely.
This weather we are having is keeping me inside at the moment but at least I can catch up on odd jobs around the house.
I guess keeping me out of mischief…
Whipping up a storm
It really is whipping up a storm today in Zeeuws Vlaanderen.
I have had to batten down the hatches in the garden because of the hard wind and rain. All my pot plants are sheltering now against a wall…
My blood levels are back to normal once more and my appointment with the oncologist went well.
I had an x-ray of my pelvic area also today because of recent pain in my hips during the night. It is a burning sensation that wakes me up when I turn in my bed to change position. To be sure an x-ray was taken to out rule any further spread.
I have to call the oncology office tomorrow for the results which I am sure will be fine but don’t want to take any chances.
The operation is still scheduled for the 20th March and on the 18th two days before I have my blood checked to see that I am healthy enough for the operation.
The following Tuesday will be the start of the third round of chemo….
I have had to batten down the hatches in the garden because of the hard wind and rain. All my pot plants are sheltering now against a wall…
My blood levels are back to normal once more and my appointment with the oncologist went well.
I had an x-ray of my pelvic area also today because of recent pain in my hips during the night. It is a burning sensation that wakes me up when I turn in my bed to change position. To be sure an x-ray was taken to out rule any further spread.
I have to call the oncology office tomorrow for the results which I am sure will be fine but don’t want to take any chances.
The operation is still scheduled for the 20th March and on the 18th two days before I have my blood checked to see that I am healthy enough for the operation.
The following Tuesday will be the start of the third round of chemo….
Next wave
The last dose of this second chemo cycle was given today with a reduced dose because of low blood platelets.
Now I am entering into the rest phase for a couple of weeks before cycle three begins. This may be delayed one week because of the operation on the 20th.
Next Monday I meet up with my oncologist to get confirmation on this and to have a full blood work up to check my general health.
Today I met up with old colleagues I used to work with at the hospital. They came to visit me one by one during my chemo treatment and it was such a pleasure to catch up and have a chat as my energy levels are great at the moment.
So that’s it for the chemo for a few weeks and now my body has a chance to recover before the next wave.
Now I am entering into the rest phase for a couple of weeks before cycle three begins. This may be delayed one week because of the operation on the 20th.
Next Monday I meet up with my oncologist to get confirmation on this and to have a full blood work up to check my general health.
Today I met up with old colleagues I used to work with at the hospital. They came to visit me one by one during my chemo treatment and it was such a pleasure to catch up and have a chat as my energy levels are great at the moment.
So that’s it for the chemo for a few weeks and now my body has a chance to recover before the next wave.
Dreams
My thoughts have been more positive of late as I start to look ahead to the future once chemo has finished.
I am not sure of what the future holds for me just like anyone else although I want to live a good life and search out my dreams.
I have changed as a person through this journey with cancer and the life I want to lead in the future will reflect this.
My need for simplicity and a stress free environment is very appealing and letting go of useless material possessions to make me feel freer.
In my thoughts and dreams I am travelling extensively through ought the world and this is when I am at my happiest.
I am not sure of what the future holds for me just like anyone else although I want to live a good life and search out my dreams.
I have changed as a person through this journey with cancer and the life I want to lead in the future will reflect this.
My need for simplicity and a stress free environment is very appealing and letting go of useless material possessions to make me feel freer.
In my thoughts and dreams I am travelling extensively through ought the world and this is when I am at my happiest.
Look and see
The look and see operation is provisionally booked for the 20th March and I am waiting for a confirmation letter for this date.
Apparently three days have been scheduled although the Urologist mentioned a one night stay if it is a minor repair. I guess they have to be cautious because of the chemo treatment at the moment which will extend the normal recovery.
Instead of getting my blood levels checked the day before each chemo I have been advised to arrive thirty minutes before my chemo appointment. This is much better as I now only have one trip a week to the hospital. It just means I will wait for the blood result to come through before the treatment can go ahead.
Tomorrow will be day 15 of the second round chemo and then I am done and dusted for another two weeks. I am pleased this second round has nearly finished and thankful that the yucky feelings have gone away.
When I visit the oncologist before the start of the third round I am going to ask for more anti sickness medication to help me through the Cisplatinum on day 2 of the third round. It really was a good eight days before I felt anywhere near normal this last time and I certainly want to avoid that next time.
Apparently three days have been scheduled although the Urologist mentioned a one night stay if it is a minor repair. I guess they have to be cautious because of the chemo treatment at the moment which will extend the normal recovery.
Instead of getting my blood levels checked the day before each chemo I have been advised to arrive thirty minutes before my chemo appointment. This is much better as I now only have one trip a week to the hospital. It just means I will wait for the blood result to come through before the treatment can go ahead.
Tomorrow will be day 15 of the second round chemo and then I am done and dusted for another two weeks. I am pleased this second round has nearly finished and thankful that the yucky feelings have gone away.
When I visit the oncologist before the start of the third round I am going to ask for more anti sickness medication to help me through the Cisplatinum on day 2 of the third round. It really was a good eight days before I felt anywhere near normal this last time and I certainly want to avoid that next time.
Nourishment
The fog is lifting today thankfully and I slept really well as I only woke up to take a pee once in the night.
I feel pretty refreshed today considering the effects of the last week’s chemo on my body, mind and spirit.
I jumped into the shower and my belly requested some nourishment so I have just scoffed down a couple of cheese and cucumber sandwiches and they were great.
The plan of action today is to use this energy burst to its greatest and get out of the house and gets lots of fresh air.
It is good to be back to the land of the living…..
I feel pretty refreshed today considering the effects of the last week’s chemo on my body, mind and spirit.
I jumped into the shower and my belly requested some nourishment so I have just scoffed down a couple of cheese and cucumber sandwiches and they were great.
The plan of action today is to use this energy burst to its greatest and get out of the house and gets lots of fresh air.
It is good to be back to the land of the living…..
Crying like a baby
I am feeling pretty fragile at the moment and just trying to take things one day a a time.
It has been a struggle to function lately and this has hit me emotionally very hard this last week.
This is only the second cycle and I thought the side effects I have right now would have tapered off a little but they remain.
It is a foggy feeling and concentration is difficult and everything is just too much effort. When I try to do my daily chores I am becoming more and more irritated with the things I cannot tackle.
At least it will help me a little with my controlling ways were everything has a place and a method and system. Those days are certainly gone right now …I had to giggle to myself today when I emptied the dishwasher and I just about threw the clean dishes and cutlery into any place I could find in the cupboard just to complete the task .
Ok so it is not going well at the moment I admit it and feel like crying like a baby but know that I am having some bad days and things will improve I just know it!!
It has been a struggle to function lately and this has hit me emotionally very hard this last week.
This is only the second cycle and I thought the side effects I have right now would have tapered off a little but they remain.
It is a foggy feeling and concentration is difficult and everything is just too much effort. When I try to do my daily chores I am becoming more and more irritated with the things I cannot tackle.
At least it will help me a little with my controlling ways were everything has a place and a method and system. Those days are certainly gone right now …I had to giggle to myself today when I emptied the dishwasher and I just about threw the clean dishes and cutlery into any place I could find in the cupboard just to complete the task .
Ok so it is not going well at the moment I admit it and feel like crying like a baby but know that I am having some bad days and things will improve I just know it!!
Cisplatinum is a bitch
This time round it has hit me hard and I have found it testing to find my feet the last few days.
It has hit me like a wave of tiredness and with feelings of lacklustre and everything is just a struggle at the moment.
I am sleeping more and more and I have headaches throughout the day and since Thursday I have had a feeling of nausea although luckily I have not been physically sick.
Constipation has been pretty bad since Wednesday although yesterday evening my body finally allowed me to offload some goods which has been a great relief to my system I can tell you.
The appointment for my pelvic floor exercises did not go ahead today as when I arrived at the clinic I was told that my physiotherapist had gone home sick. So that was a wasted journey when I too was feeling pretty crappy.
I then went onto the hospital to get my blood checked for the chemo tomorrow. I was called an hour later to be told that my blood work was good and the chemo planning will go ahead as scheduled.
I was a little taken aback by this because I feel so rotten at the moment and was sure they would tell me my levels were too low.
The Cisplatinum is obviously going to be the bitch each time I take it as it has certainly slapped me in the face.
My incontinence is virtually back to square one again at night time as I need to get up every two hours to stop any serious leakage. It is something that I am just going to have to get used to during the chemo on the Cisplatinum week.
Thank goodness this will only be temporary and next week should improve slowly as my bodies natural instincts to wake me up appear again.
I wanted to write something positive but don’t feel very positive about my situation at the moment so that is just the way it is.
Tomorrow will be another day….
It has hit me like a wave of tiredness and with feelings of lacklustre and everything is just a struggle at the moment.
I am sleeping more and more and I have headaches throughout the day and since Thursday I have had a feeling of nausea although luckily I have not been physically sick.
Constipation has been pretty bad since Wednesday although yesterday evening my body finally allowed me to offload some goods which has been a great relief to my system I can tell you.
The appointment for my pelvic floor exercises did not go ahead today as when I arrived at the clinic I was told that my physiotherapist had gone home sick. So that was a wasted journey when I too was feeling pretty crappy.
I then went onto the hospital to get my blood checked for the chemo tomorrow. I was called an hour later to be told that my blood work was good and the chemo planning will go ahead as scheduled.
I was a little taken aback by this because I feel so rotten at the moment and was sure they would tell me my levels were too low.
The Cisplatinum is obviously going to be the bitch each time I take it as it has certainly slapped me in the face.
My incontinence is virtually back to square one again at night time as I need to get up every two hours to stop any serious leakage. It is something that I am just going to have to get used to during the chemo on the Cisplatinum week.
Thank goodness this will only be temporary and next week should improve slowly as my bodies natural instincts to wake me up appear again.
I wanted to write something positive but don’t feel very positive about my situation at the moment so that is just the way it is.
Tomorrow will be another day….
Gruelling
I am home again after the Cisplatinum chemo one night stay.
During the administration of the Cisplatinum I had cramp in my hand for around 3 hours which was not very pleasant.
The night time was the usual busy schedule of going to the toilet every hour because of all the fluids they give me to flush out the chemo.
It is pretty gruelling and tiring but I am home now so I am going to bed soon for a little sleep so that I can enjoy the evening.
During the administration of the Cisplatinum I had cramp in my hand for around 3 hours which was not very pleasant.
The night time was the usual busy schedule of going to the toilet every hour because of all the fluids they give me to flush out the chemo.
It is pretty gruelling and tiring but I am home now so I am going to bed soon for a little sleep so that I can enjoy the evening.
Bo Bo
The nurses on the chemo ward are very gentle and caring people and they make every effort to make us all feel comfortable.
The infuse needle slid in like a dream today and the chemo and medicines administered over two and half hours.
On the way home I felt pretty dizzy but then again that is nothing unusual for me….
Walking around the field with Bo Bo soon cleared my head although a nippy affair. He was not very enthusiastic to be walking so far in this cold foggy weather but we managed.
The house was lovely and toasty when we got home so that was a really nice welcome…
Tomorrow I check in for one night for the Cisplatinum chemo and hope that the side effects remain as they have so far…
I will check in again on Thursday to give an update and until then….
The infuse needle slid in like a dream today and the chemo and medicines administered over two and half hours.
On the way home I felt pretty dizzy but then again that is nothing unusual for me….
Walking around the field with Bo Bo soon cleared my head although a nippy affair. He was not very enthusiastic to be walking so far in this cold foggy weather but we managed.
The house was lovely and toasty when we got home so that was a really nice welcome…
Tomorrow I check in for one night for the Cisplatinum chemo and hope that the side effects remain as they have so far…
I will check in again on Thursday to give an update and until then….
Pompodoro
The second round chemo has been confirmed a go for tomorrow at 13:00 and the one night stay Wednesday for the big one.
Not sure what lifted my blood levels could have been the overload of fruit and vegetables I have been eating this last week.
Pomegranates are known to be a powerful antioxidant and body booster and I have had loads of this juiced this week.
This wonderful crispy sunny weather has been great for walks with Bo Bo the dog but unfortunately the ground has been frozen too hard to do anything in the garden.
I did manage to sow loads of seeds today that I will keep in a warm under glass until they are mature enough o be transplanted into the garden.
I was far too late last year getting them going and if we have a warm spring again it will be perfect timing.
The herbs I have sowed are chives, flat leaf parsley, coriander, mint and basil. Pompodoro tomatoes and chilli and pepper plants have also been sown with loads of annual flowers for the borders.
I still have loads to sow but need some more potting compost and pots so I can get the sweet corn, cucumbers and salad leaves on the go.
Not sure what lifted my blood levels could have been the overload of fruit and vegetables I have been eating this last week.
Pomegranates are known to be a powerful antioxidant and body booster and I have had loads of this juiced this week.
This wonderful crispy sunny weather has been great for walks with Bo Bo the dog but unfortunately the ground has been frozen too hard to do anything in the garden.
I did manage to sow loads of seeds today that I will keep in a warm under glass until they are mature enough o be transplanted into the garden.
I was far too late last year getting them going and if we have a warm spring again it will be perfect timing.
The herbs I have sowed are chives, flat leaf parsley, coriander, mint and basil. Pompodoro tomatoes and chilli and pepper plants have also been sown with loads of annual flowers for the borders.
I still have loads to sow but need some more potting compost and pots so I can get the sweet corn, cucumbers and salad leaves on the go.
I can handle it
My Urologist would like to take a look at my neo bladder to check out the 2cm mass. He does not know for sure what exactly it is and needs to take a look and repair any damage.
The opening to my new bladder is also too small and needs enlarging as when I urinate it just trickles out. Today He tried to insert a catheter and it just refused to go inside the neo bladder.
I have to wait now to be called up for the operation within the next three weeks. It will be just a one night stay if all goes well but may need to come home with a catheter for an extra day.
The chemo can continue it just means that the recovery and healing time will be longer….but I can handle that.
The opening to my new bladder is also too small and needs enlarging as when I urinate it just trickles out. Today He tried to insert a catheter and it just refused to go inside the neo bladder.
I have to wait now to be called up for the operation within the next three weeks. It will be just a one night stay if all goes well but may need to come home with a catheter for an extra day.
The chemo can continue it just means that the recovery and healing time will be longer….but I can handle that.
Exhausted
I feel exhausted at the moment as every thing I do seems to take great effort.
The weather is foggy and cold today and I can feel the cold deep into my bones when outside even though I have been wrapped up well.
When I look in the mirror I seemed to have aged overnight and my skin is very dry and pastier looking.
I sleep at least 10 hours a day but this ten hours is broken for toilet breaks every two to three hours which at times is a struggle.
Vitamins are needed right now I think with lots of fresh vegetables to give my body a boost.
I have just bought a few kilos of oranges so that should pump up the vitamin c at least.
It is strange because it feels like I am being lazy as I can see things need to be done around the house but I just shrug them off and walk on by.
I think I just need to let it be for a couple of days and just get with the flow.
The last few days of sunny weather we had really got me thinking about the garden. It will soon be time to start sowing seeds for the flowers and vegetables this summer. I am so looking forward to everything growing again in the garden and filling all the gaps up.
I having a feeling of irritation and frustration at the moment and little things that normally I would not care about are annoying me.
This mood will lift….tomorrow is another day and I should look forward to it……..
The weather is foggy and cold today and I can feel the cold deep into my bones when outside even though I have been wrapped up well.
When I look in the mirror I seemed to have aged overnight and my skin is very dry and pastier looking.
I sleep at least 10 hours a day but this ten hours is broken for toilet breaks every two to three hours which at times is a struggle.
Vitamins are needed right now I think with lots of fresh vegetables to give my body a boost.
I have just bought a few kilos of oranges so that should pump up the vitamin c at least.
It is strange because it feels like I am being lazy as I can see things need to be done around the house but I just shrug them off and walk on by.
I think I just need to let it be for a couple of days and just get with the flow.
The last few days of sunny weather we had really got me thinking about the garden. It will soon be time to start sowing seeds for the flowers and vegetables this summer. I am so looking forward to everything growing again in the garden and filling all the gaps up.
I having a feeling of irritation and frustration at the moment and little things that normally I would not care about are annoying me.
This mood will lift….tomorrow is another day and I should look forward to it……..
Fold in my neo
Ok so they think it is a fold in my neo bladder and nothing to worry about.
I do worry however because I have the pain in my back and problems with urinating so I have made an appointment with my Urologist this Thursday.
The chemo has been delayed one week because my white blood cells are still too low to be able to have the treatment.
On the positive side at least it gives me another week rest in this lovely sunshine we are having.
I do worry however because I have the pain in my back and problems with urinating so I have made an appointment with my Urologist this Thursday.
The chemo has been delayed one week because my white blood cells are still too low to be able to have the treatment.
On the positive side at least it gives me another week rest in this lovely sunshine we are having.
2cm Mass
The echo scan has left me worried as a 2cm mass was found inside my new bladder, the radiologist was unsure of what it could be. He was a very nice man and tried to calm me with his gentle voice.
To get a clearer picture he also took a standard e-x-ray but this did not make it any clearer for him as to the makeup of the mass. He would like the Urologist to have a look at it tomorrow also.
So when I call at 10:00 in the morning I will hear what the next steps are going to be if any.
Of course I feel downhearted about this but will try not to worry too much.
Keep me in your thoughts and send me good vibes for a positive result tomorrow or in days to come….
To get a clearer picture he also took a standard e-x-ray but this did not make it any clearer for him as to the makeup of the mass. He would like the Urologist to have a look at it tomorrow also.
So when I call at 10:00 in the morning I will hear what the next steps are going to be if any.
Of course I feel downhearted about this but will try not to worry too much.
Keep me in your thoughts and send me good vibes for a positive result tomorrow or in days to come….
Beach and dunes
Just got back from one of many appointments today….
The appointment this morning with the lab to get blood works and then onto the Oncologist an hour later.
My white blood cells are remaining low and if I have no improvement overnight then the second round of chemo will be delayed for one week. It just means that I am more susceptible to infection at the moment.
I was asked to give a urine sample today also to check the anomalies that my general doctor keep having. They are sending the sample to the lab also to see if I have any infection or blood present in the urine.
Tomorrow I have my blood taken once more early in the morning and at 10:00 I can call for the results of the blood work. They will also confirm if the chemo will go ahead at 13:00 or delay it for a week.
The pelvic floor exercise appointment went well also today and I am happy to report that the exercises are already helping me with my continence issues during the night. This weekend I had no accidents and once only a few dribbles because I was too lazy to get out of bloody bed. J
My homework for the next two weeks is to keep up the exercise routine down below and they will check the progress in a couple of weeks…so far so good…
Later today I have an echo scan to check my abdomen and hopefully get to the bottom of the back pain which I must say is far less than last week thankfully.
The results of the echo will also be given tomorrow at 10:00 with the blood work….
The weekend was really lovely and sunny and I spent lots of time in the garden trimming the grass edges and making new borders which look fabulous already. The spring bulbs are really coming up quickly this year. I really hope we have a lovely warm April just like last year…..
On Sunday I had a lovely walk along the beach and dunes at Cadsand with my partner and friends and enjoyed a beer at a beach club…it really made me have a holiday feeling and I felt refreshed for the walk in the sea air….
Long may the sun shine……
The appointment this morning with the lab to get blood works and then onto the Oncologist an hour later.
My white blood cells are remaining low and if I have no improvement overnight then the second round of chemo will be delayed for one week. It just means that I am more susceptible to infection at the moment.
I was asked to give a urine sample today also to check the anomalies that my general doctor keep having. They are sending the sample to the lab also to see if I have any infection or blood present in the urine.
Tomorrow I have my blood taken once more early in the morning and at 10:00 I can call for the results of the blood work. They will also confirm if the chemo will go ahead at 13:00 or delay it for a week.
The pelvic floor exercise appointment went well also today and I am happy to report that the exercises are already helping me with my continence issues during the night. This weekend I had no accidents and once only a few dribbles because I was too lazy to get out of bloody bed. J
My homework for the next two weeks is to keep up the exercise routine down below and they will check the progress in a couple of weeks…so far so good…
Later today I have an echo scan to check my abdomen and hopefully get to the bottom of the back pain which I must say is far less than last week thankfully.
The results of the echo will also be given tomorrow at 10:00 with the blood work….
The weekend was really lovely and sunny and I spent lots of time in the garden trimming the grass edges and making new borders which look fabulous already. The spring bulbs are really coming up quickly this year. I really hope we have a lovely warm April just like last year…..
On Sunday I had a lovely walk along the beach and dunes at Cadsand with my partner and friends and enjoyed a beer at a beach club…it really made me have a holiday feeling and I felt refreshed for the walk in the sea air….
Long may the sun shine……
A little drama
Just a little drama this afternoon when I realized I could not urinate. I decided to do a catheter and it kind of got stuck at the neck of my new bladder and I had to retract it. This alone unblocked the hole and I was able to urinate normally again. It was a great relief I can tell you and it was the most I have ever urinated with this new bladder. Definitely stretched it a few more millimetres one thinks…. :-)
Anomalies
The appointment at my doctor went well in regard to the results of the x-ray as nothing unusual was found in my spine….what a relief I can tell you.
My urine still has anomalies and I need to discuss this further with my Oncology doctor on Monday.
An appointment has been set up also on Monday for an echo scan of my abdomen as the pain is getting worse. During the examination today when the doctor pressed on my back I had no pain. When he pressed on my belly right side I had pain in my back….really weird.
I just have to increase my painkillers until Monday when hopefully it can be explained a little more thoroughly.
It is a worry of course but I will not let it get me down…just have to stay positive that it is nothing serious and that I can deal with it.
I am going to make it a Super Tuesday anyhow and have a few glasses of wine …..
My urine still has anomalies and I need to discuss this further with my Oncology doctor on Monday.
An appointment has been set up also on Monday for an echo scan of my abdomen as the pain is getting worse. During the examination today when the doctor pressed on my back I had no pain. When he pressed on my belly right side I had pain in my back….really weird.
I just have to increase my painkillers until Monday when hopefully it can be explained a little more thoroughly.
It is a worry of course but I will not let it get me down…just have to stay positive that it is nothing serious and that I can deal with it.
I am going to make it a Super Tuesday anyhow and have a few glasses of wine …..
Super Tuesday
I thought I would be paying a visit to the hospital last night as I had really bad pain in my lower back after I emptied my new bladder.
The pain was nothing I have experienced before and it worried me although it did subside after ten minutes.
During the night I had similar experiences each time after I emptied my bladder the pain returned a few minutes later and slowly disappeared.
Getting up this morning was fine but as the morning has progressed the pain in my back has increased and remains constant although not as severe as after urination. I have called my doctor and set up an appointment later this afternoon. The result of the x-ray is also available and I can have my urine checked at the same time.
It probably is just another bladder infection hopefully and that the x-ray is normal…..
So it is Super Tuesday today and I hope that it will be a Super Tuesday evening for me too….
The pain was nothing I have experienced before and it worried me although it did subside after ten minutes.
During the night I had similar experiences each time after I emptied my bladder the pain returned a few minutes later and slowly disappeared.
Getting up this morning was fine but as the morning has progressed the pain in my back has increased and remains constant although not as severe as after urination. I have called my doctor and set up an appointment later this afternoon. The result of the x-ray is also available and I can have my urine checked at the same time.
It probably is just another bladder infection hopefully and that the x-ray is normal…..
So it is Super Tuesday today and I hope that it will be a Super Tuesday evening for me too….
A probe too far
For me it was one probe too far yesterday with the pelvic floor training. It was advised to use a machine to check my pelvic floor muscle strength which I agreed too. Little did I know that this would mean an internal probe?
The physiotherapist left the room asking me to take my shoes and trousers off while she collected the machine. When she returned to the room with a trolley in tow and a machine on top looking like an electrical device….it looked pretty harmless.
I assumed she would be putting something between my legs to check the strength of my grip but was shocked to be informed that she would be inserting a probe up my bum for the procedure. It kind of shocked me and I felt really upset by it and refused the procedure…..I am really not sure why it upset me so much especially with going through so much the last 6 months.
Having had my operation performed in a training hospital in Rotterdam you would think I would be used to having personal probes inserted as I had so many when learning to self catheter and having cystoscopy procedures with always an entourage of doctors and nurses in tow.
The physiotherapist was a little taken aback by my reaction and she assured me that it would not be painful. My reply was that I just was not prepared for this procedure and she said we can do it another time when you feel ready and I said no I don’t want to have it ever…..and that I am very happy with the knowledge that I can clench down well in that area….
I can certainly laugh about it now but I am surprised by my own reaction….it probably is because I have been through so much and any unnecessary probing I can certainly do with ought.
The rest of the time during my appointment was spent holding and releasing my pelvic floor muscle 3 seconds on three seconds off.
I have another appointment next Monday but feel that if all I am going to do for half an hour each time is to do the same exercise then I will cancel further appointments and continue myself at home…..
During the last weekend I was advised to note down all fluid consumption and all urine volume which I did and my daily fluid intake was roughly three and a half litres a day and a a little less for urine output.
The advise was to drink more in the daytime and to stop around 19:00 at night to help stop leakage during my sleep. It is so hard to do this as I am so thirsty all the time probably due to the chemo and medicines I take right now. I will try to reduce my fluid though if it means dryer nights…..maybe I should try sips of icy fluids instead of full glasses to wet my mouth….
The physiotherapist left the room asking me to take my shoes and trousers off while she collected the machine. When she returned to the room with a trolley in tow and a machine on top looking like an electrical device….it looked pretty harmless.
I assumed she would be putting something between my legs to check the strength of my grip but was shocked to be informed that she would be inserting a probe up my bum for the procedure. It kind of shocked me and I felt really upset by it and refused the procedure…..I am really not sure why it upset me so much especially with going through so much the last 6 months.
Having had my operation performed in a training hospital in Rotterdam you would think I would be used to having personal probes inserted as I had so many when learning to self catheter and having cystoscopy procedures with always an entourage of doctors and nurses in tow.
The physiotherapist was a little taken aback by my reaction and she assured me that it would not be painful. My reply was that I just was not prepared for this procedure and she said we can do it another time when you feel ready and I said no I don’t want to have it ever…..and that I am very happy with the knowledge that I can clench down well in that area….
I can certainly laugh about it now but I am surprised by my own reaction….it probably is because I have been through so much and any unnecessary probing I can certainly do with ought.
The rest of the time during my appointment was spent holding and releasing my pelvic floor muscle 3 seconds on three seconds off.
I have another appointment next Monday but feel that if all I am going to do for half an hour each time is to do the same exercise then I will cancel further appointments and continue myself at home…..
During the last weekend I was advised to note down all fluid consumption and all urine volume which I did and my daily fluid intake was roughly three and a half litres a day and a a little less for urine output.
The advise was to drink more in the daytime and to stop around 19:00 at night to help stop leakage during my sleep. It is so hard to do this as I am so thirsty all the time probably due to the chemo and medicines I take right now. I will try to reduce my fluid though if it means dryer nights…..maybe I should try sips of icy fluids instead of full glasses to wet my mouth….
Pelvic Floor
My appointment for the pelvic floor training went well today with the initial consultation and relaxation exercise.
I had to tense different parts of my body then relax them to understand the natural feelings I basically take for granted. This was not a problem and she was happy that I can relax my muscles automatically.
For the next couple of days I have to fill in a form to measure the amount of fluid I drink and the volume I urinate along with logging the time.
I explained that daytime continence is nearly 100% except for the odd dribble when I sneeze or cough. Nighttimes are when I have an incontinence problem if I don’t wake every two hours to urinate. This she assures me can be improved upon with the pelvic floor exercises.
Monday will be my next appointment to start the pelvic floor routines and I will have roughly ten sessions in total.
I had to tense different parts of my body then relax them to understand the natural feelings I basically take for granted. This was not a problem and she was happy that I can relax my muscles automatically.
For the next couple of days I have to fill in a form to measure the amount of fluid I drink and the volume I urinate along with logging the time.
I explained that daytime continence is nearly 100% except for the odd dribble when I sneeze or cough. Nighttimes are when I have an incontinence problem if I don’t wake every two hours to urinate. This she assures me can be improved upon with the pelvic floor exercises.
Monday will be my next appointment to start the pelvic floor routines and I will have roughly ten sessions in total.
Burgers chips and milkshakes
The problems with the pain in my back have increased so I made an appointment for today at my doctors. He had a good look at my spine and asked me to perform certain movements to see if the pain increased. None of his actions caused extra pain as it feels like it is coming from inside in the lower back area and reaching to my right side. It is a burning twisting pain that increases at night when I am relaxed in bed.
My urine was also tested and yet again I have abnormalities in my urine which can lead to an infection. This is now the 10th time I have had abnormalities since the operation, each time with a course of antibiotics prescribed. This time though my doctor wants to wait and ask my urologist for assistance with these recurring urine problems….
He thinks that because my new bladder is made from my small intestine the abnormalities are coming from the structure of the new bladder. The small intestine was used for the creation of the bladder and has taken over the function of my bladder but it still thinks it is a small intestine and produces the normal mucus that the intestine produces to push around the food being absorbed into our system. This mucus is expelled when I urinate and can be seen in the urine and resembles fine creamy strands. I only feel them when the mucus is concentrated after I eat dairy products and feels like I am passing wet tissue. I can tell you that this was pretty alarming the first time I saw this but has become normal to me now……
The doctor has requested an x-ray because of the back pain and amazingly when I called the hospital to make the appointment it was scheduled for later this afternoon. I suppose that is the benefit of living in a quiet area instead of the city…..
So I will be packing myself off for this photo shortly and can only guess the results will be given after the weekend at my doctors office………
The swimming party went really well yesterday and all 19 kids had a great time swimming and splashing around for three and a half hours finishing off with burgers and chips and milkshakes……..
My urine was also tested and yet again I have abnormalities in my urine which can lead to an infection. This is now the 10th time I have had abnormalities since the operation, each time with a course of antibiotics prescribed. This time though my doctor wants to wait and ask my urologist for assistance with these recurring urine problems….
He thinks that because my new bladder is made from my small intestine the abnormalities are coming from the structure of the new bladder. The small intestine was used for the creation of the bladder and has taken over the function of my bladder but it still thinks it is a small intestine and produces the normal mucus that the intestine produces to push around the food being absorbed into our system. This mucus is expelled when I urinate and can be seen in the urine and resembles fine creamy strands. I only feel them when the mucus is concentrated after I eat dairy products and feels like I am passing wet tissue. I can tell you that this was pretty alarming the first time I saw this but has become normal to me now……
The doctor has requested an x-ray because of the back pain and amazingly when I called the hospital to make the appointment it was scheduled for later this afternoon. I suppose that is the benefit of living in a quiet area instead of the city…..
So I will be packing myself off for this photo shortly and can only guess the results will be given after the weekend at my doctors office………
The swimming party went really well yesterday and all 19 kids had a great time swimming and splashing around for three and a half hours finishing off with burgers and chips and milkshakes……..
First rest period
So that is the first month of chemo out the way and now I have a rest period for nearly two weeks.
I received three quarters of the usual amount of chemo today because of the low blood platelets, which made the whole process 15 minutes shorter.
The chemo nurse explained that the low blood platelets are for clotting purposes, and I just have to take care not to cut or bash my body. Bruising of the skin is much easier with low platelet counts so I will be a fragile sensitive boy for a few weeks…..lol
Hopefully with this rest period my platelets can return back to normal levels before I start the next cycle of chemo. Otherwise it will be delayed until levels return to an acceptable point.
I feel really great at the moment and cannot complain about any adverse side effects. My chemo nurse explained that I should not be lulled into a false sense of security as the effects will increase each time.
Sometimes I feel a bit of a fake as I can function perfectly well and wish I could work as normal. My work environment would not be healthy for me though because my immune system will be lowered each time I have a chemo. I am then susceptible to pick up infections colds and flu’s very easily which can lead to something more serious like pneumonia.
My body weight has increased two kilo’s in a week so I will have to keep an eye on that. Appetite has not been an issue with the treatment and if anything the urges to eat have increased which is great.
I am looking forward to going to a swimming birthday party tomorrow for my friend’s child as she has invited 18 of her class mates. So tomorrow will be a great but hectic day with all the kids splashing about everywhere….just what I needed….
I received three quarters of the usual amount of chemo today because of the low blood platelets, which made the whole process 15 minutes shorter.
The chemo nurse explained that the low blood platelets are for clotting purposes, and I just have to take care not to cut or bash my body. Bruising of the skin is much easier with low platelet counts so I will be a fragile sensitive boy for a few weeks…..lol
Hopefully with this rest period my platelets can return back to normal levels before I start the next cycle of chemo. Otherwise it will be delayed until levels return to an acceptable point.
I feel really great at the moment and cannot complain about any adverse side effects. My chemo nurse explained that I should not be lulled into a false sense of security as the effects will increase each time.
Sometimes I feel a bit of a fake as I can function perfectly well and wish I could work as normal. My work environment would not be healthy for me though because my immune system will be lowered each time I have a chemo. I am then susceptible to pick up infections colds and flu’s very easily which can lead to something more serious like pneumonia.
My body weight has increased two kilo’s in a week so I will have to keep an eye on that. Appetite has not been an issue with the treatment and if anything the urges to eat have increased which is great.
I am looking forward to going to a swimming birthday party tomorrow for my friend’s child as she has invited 18 of her class mates. So tomorrow will be a great but hectic day with all the kids splashing about everywhere….just what I needed….
Happy chappy
I am amazed at how quickly the laboratory works in forwarding the results of my blood test this afternoon. Just 40 minutes after I got home and I receive a call with the results.
My blood platelets are low but they will continue to offer the 15th day chemo tomorrow although with a smaller dose.
I feel perfectly fine although I am not sure if having low blood platelets would have any special feeling. Apparently it has something to do with the bloods clotting system and too low levels can cause bleeding.
It makes me feel comfortable to know that they are watching the levels careful and taking appropriate action…I feel that I am good hands.
This Friday I start with my muscle training to improve my night time continence as presently I have to wake every two hours throughout the night. These exercises I will be learning will strengthen my nether regions to improve the continence issues.
I think it involves the same muscles women strengthen after child birth…..
If I can stretch my toilet calls out to every three to four hours I will be a very happy chappy indeed…..
My blood platelets are low but they will continue to offer the 15th day chemo tomorrow although with a smaller dose.
I feel perfectly fine although I am not sure if having low blood platelets would have any special feeling. Apparently it has something to do with the bloods clotting system and too low levels can cause bleeding.
It makes me feel comfortable to know that they are watching the levels careful and taking appropriate action…I feel that I am good hands.
This Friday I start with my muscle training to improve my night time continence as presently I have to wake every two hours throughout the night. These exercises I will be learning will strengthen my nether regions to improve the continence issues.
I think it involves the same muscles women strengthen after child birth…..
If I can stretch my toilet calls out to every three to four hours I will be a very happy chappy indeed…..
Cancerophobia
Cancerophobia is a neurotic and pathological fear of getting cancer which I believe to have suffered for many years prior to my diagnosis.
It has been established that cancerophobia has a high probability of leading to cancer at some point or other. I am a very strong believer that we are what we think.
The fact that my mum and grandparents developed and died of cancer relates also hereditary but this inner fear has been with me since childhood.
Cancer can be many things, disease, destiny, opportunity, life drama or tragedy.
My life as I knew it has changed completely due to this journey with bladder cancer.
It has given me the opportunity to consider what is truly important and I am learning to see my life from different points of view and shaping it into something new.
I continually question who I am and how I now relate to other people and of course what my mission in life is.
The best I can do right now is to use this journey as an opportunity as I have had my fair share of drama’s and tragedy.
My chemotherapy treatment is going very well although I do question if it alone is enough to prolong or cure my life.
During my research of my disease I have come across many alternative therapies which I believe can work together in complimenting traditional therapies.
Chemotherapy searches out and destroys degenerative cells and also my healthy ones which in turn destroy some of the health I still possess. At the same time contaminating the environment with its waste products.
Talking about waste products, I read an interesting article about traces of Prozac being found in the drinking water in the south of England. So many people are prescribed Prozac as an anti depressant in the UK that trace amounts of the chemical compounds making up this drug have been found in the water. To be honest I did not realize that the urine fed into the sewage system was eventually recycled back into drinking water….yikes…
I was kind of digressing I guess…..
Oh yes alternative therapies or complimentary therapies assisting conventional treatment not only to zap the cancer but to treat the body and soul as a whole.
I know that it is important to lead a healthy lifestyle, sleeping well and eating healthy and balanced food along with daily exercise.
Finding and dealing with the inner issues have an extremely important place in being one with body and spirit.
It is easy to be led into false illusions while researching complimentary therapies and I am not easily led by claims of cures. If any claim is made to a cure then this helps me to swiftly move on as I am not wasting my time with foolish claims.
I am leaning towards things like meditation and massage and yoga for my body and soul rejuvenation. I think that taking up hobbies in arts and crafts would be rather soothing also for my spirit.
Later today I will have blood taken for analysis for day 15 of the chemo tomorrow….I am so looking forward to having a rest for a couple of weeks now before I start all over again for the second cycle.
It has been established that cancerophobia has a high probability of leading to cancer at some point or other. I am a very strong believer that we are what we think.
The fact that my mum and grandparents developed and died of cancer relates also hereditary but this inner fear has been with me since childhood.
Cancer can be many things, disease, destiny, opportunity, life drama or tragedy.
My life as I knew it has changed completely due to this journey with bladder cancer.
It has given me the opportunity to consider what is truly important and I am learning to see my life from different points of view and shaping it into something new.
I continually question who I am and how I now relate to other people and of course what my mission in life is.
The best I can do right now is to use this journey as an opportunity as I have had my fair share of drama’s and tragedy.
My chemotherapy treatment is going very well although I do question if it alone is enough to prolong or cure my life.
During my research of my disease I have come across many alternative therapies which I believe can work together in complimenting traditional therapies.
Chemotherapy searches out and destroys degenerative cells and also my healthy ones which in turn destroy some of the health I still possess. At the same time contaminating the environment with its waste products.
Talking about waste products, I read an interesting article about traces of Prozac being found in the drinking water in the south of England. So many people are prescribed Prozac as an anti depressant in the UK that trace amounts of the chemical compounds making up this drug have been found in the water. To be honest I did not realize that the urine fed into the sewage system was eventually recycled back into drinking water….yikes…
I was kind of digressing I guess…..
Oh yes alternative therapies or complimentary therapies assisting conventional treatment not only to zap the cancer but to treat the body and soul as a whole.
I know that it is important to lead a healthy lifestyle, sleeping well and eating healthy and balanced food along with daily exercise.
Finding and dealing with the inner issues have an extremely important place in being one with body and spirit.
It is easy to be led into false illusions while researching complimentary therapies and I am not easily led by claims of cures. If any claim is made to a cure then this helps me to swiftly move on as I am not wasting my time with foolish claims.
I am leaning towards things like meditation and massage and yoga for my body and soul rejuvenation. I think that taking up hobbies in arts and crafts would be rather soothing also for my spirit.
Later today I will have blood taken for analysis for day 15 of the chemo tomorrow….I am so looking forward to having a rest for a couple of weeks now before I start all over again for the second cycle.
Hibernation
Hibernation sounded so good to me the last few days…to be honest I just wanted to crawl up in a ball.
I was feeling sorry for myself and had to do something about that, so I don’t spiral into a dark place.
Pulled myself together today and set out on a mission to walk my usual 4.5km round the fields with Bo Bo the French bulldog. He certainly was not impressed with my spurt of energy to walk in the wind and rain.
It really did blow off the cob webs for both of us as it helped me to sort out my thoughts and file a few things that are simply not worth the effort worrying about.
Disconnecting from this situation sometimes is paramount for healthy positive living and resuming a new lifestyle….
Finding the right balance of active participation in my health care is something that has been testing to say the least. I have always been eager to know all the finer facts before making decisions. Some reading of the cold hard facts of this disease would send the strongest willed into a spiral.
Denial is not an option so no easy way out either…
Obviously I can only do the best I can at this time and not beat myself up mentally with the emotional aspects.
Fooling my self into thinking that I have other dimensions in my life at the moment is not entirely true. This cancer is profound element in my life which is a fact…..the positives of this situation will be my ability not to let it destroy my life spirit and eagerness to enjoy life’s offerings.
It is a great learning curve and I am enlightened each day with the hurdles I have been jumping.
I know I am lucky to be here and breathing and when I put my situation into perspective it calms me. Other people are in a far worse situation than me so I should count the blessings as I have so many.
Neo-Bladder infection
In the weekend just gone I had some pain in my back and when I emptied my new bladder it felt tender. On the Monday I visited my doctor and was given five days of antibiotics.
Later that day I also visited the hospital to take a sample of my urine for a lab culture and the results will be in tomorrow. Blood was also taken at the lab to check levels were stable enough to continue eighth day chemo which they were.
It is now Wednesday the day after chemo and I feel more pain in my lower back leading to my right side. It may be part of the bladder infection as it is only the third day now that I am on antibiotics. Something I will keep an eye on and inform the chemo nurse if the symptoms persist.
I am a little more depressed than normal and although talking about my cancer journey helps me to vent sometimes, it is also good to disengage from this one dimension of my life.
Keeping active will be a good positive influence as I try to perform my daily routine.
The diagnosis hits hard at times as I fight with all the emotions I am experiencing with this path I am on. The operation alone was a major shock to my system let alone the side effects of the removal of my bladder and prostate and nodes. The chemo is now well on the way in my system and I feel the effects more each day.
Later that day I also visited the hospital to take a sample of my urine for a lab culture and the results will be in tomorrow. Blood was also taken at the lab to check levels were stable enough to continue eighth day chemo which they were.
It is now Wednesday the day after chemo and I feel more pain in my lower back leading to my right side. It may be part of the bladder infection as it is only the third day now that I am on antibiotics. Something I will keep an eye on and inform the chemo nurse if the symptoms persist.
I am a little more depressed than normal and although talking about my cancer journey helps me to vent sometimes, it is also good to disengage from this one dimension of my life.
Keeping active will be a good positive influence as I try to perform my daily routine.
The diagnosis hits hard at times as I fight with all the emotions I am experiencing with this path I am on. The operation alone was a major shock to my system let alone the side effects of the removal of my bladder and prostate and nodes. The chemo is now well on the way in my system and I feel the effects more each day.
Day 8 of chemo
Day 8 of the chemo has just finished and I am so thankful for no drama’s this last week.
The last couple of days have been harder on my body as I have been feeling tired and weaker and I am sleeping longer and longer.
My mouth is a little sore and dry although I have kept up with the regime of using a soft brush and rinsing four times a day with salt water. I have the feeling I am clenching down in my mouth more which is probably also due to the stress of the first week of the unknown.
The chemo went well today and it was also great to meet up with some colleagues and friends that I have not seen since stopping working late last summer.
My bodies natural instinct to wake to urinate has disappeared and I have resorted to setting the alarm every two hours through ought the night to stop any accidents. This is just a temporary thing I guess while my body adjusts to the chemo.
Things are slowing down mentally as I find it hard to concentrate on any one thing and think that is what is known as chemo brain. My motivation is also on a backburner but I am happy to let it be for now as I adjust to this new situation.
The last couple of days have been harder on my body as I have been feeling tired and weaker and I am sleeping longer and longer.
My mouth is a little sore and dry although I have kept up with the regime of using a soft brush and rinsing four times a day with salt water. I have the feeling I am clenching down in my mouth more which is probably also due to the stress of the first week of the unknown.
The chemo went well today and it was also great to meet up with some colleagues and friends that I have not seen since stopping working late last summer.
My bodies natural instinct to wake to urinate has disappeared and I have resorted to setting the alarm every two hours through ought the night to stop any accidents. This is just a temporary thing I guess while my body adjusts to the chemo.
Things are slowing down mentally as I find it hard to concentrate on any one thing and think that is what is known as chemo brain. My motivation is also on a backburner but I am happy to let it be for now as I adjust to this new situation.
Creamy marzipan cake
Thursday afternoon I managed to get a few hours sleep and woke up around 18:00 and felt pretty refreshed.
I have a really good appetite at the moment assisted by the steroid Dexamethason which stimulates this even more. My pasta that I reheated tasted great and I managed to have two full bowls.
As far as any side effects go I little to report thankfully except that I have a rosy glow on my face and chest…looks a bit like sunburn and feels warm to the touch.
I had a fantastic night sleep and slept from 23:00 through until 06:30 which for me is amazing as since after the operation I usually wake every 2-3 hours to pee throughout the night because of the capacity of the new bladder.
Sleeping that long was great although I will be honest I woke up in a damp puddle in my bed. So the Cisplatinum chemo kept me from waking up naturally with the urge to pee. Next month when I have it again I will have to set my alarm.
Changing bedding has never been a chore I have loved so I will have to prepare more next time. I always have a sanitary towel in my underwear special designed for men that I get free from a medical company here in Holland and the insurance pays. My mattress has also a protector so it is just a sheet change which is no real hassle.
At the very beginning of this journey with my new bladder I was very emotional regarding the incontinence problems and luckily it is something I have just got used too as it now affects little of my life and my daily routine of slipping a towel in my underwear is enough to have a sense of security.
My bladder will stretch over time and the ability to retain more urine will increase allowing me to extend my sleeping pattern and eventually it should become a once a night event. I will be more than happy when this becomes routine as it is with many people with a regular bladder also.
Yesterday was also a great day and I was able to function normally and I took the last of the sickness medicine Emend 80mg along with the Dexamethason. The Dexamethason continues for one more day tomorrow and then I am off the meds until chemo on Tuesday next week.
Later in the after noon yesterday I started to feel a few cold chills along with a slight headache and strange feeling in my head….just like my brain was shivering inside…the rosy glow is still with me and I have noticed that my concentration levels have diminished. None of these feelings are stopping me from functioning or causing any concern to me.
It was great to get out of the house later that evening to a birthday drink with a lovely neighbour friend over the road and I had a delicious wedge of creamy marzipan cake with a dry white wine which I sipped gently and enjoyed very much.
It seemed as though I was present in body and could listen to conversation but was happy ad relaxed to sit back and enjoy rather than participate the way I normally would have with conversation. I was in the presence of people I know very well and was able to sit back and relax with no pressure to do anything. Just what I needed a night out of the house amongst people I love and admire and a way to get away from my thoughts that I would have at home alone in the daytime.
I have a really good appetite at the moment assisted by the steroid Dexamethason which stimulates this even more. My pasta that I reheated tasted great and I managed to have two full bowls.
As far as any side effects go I little to report thankfully except that I have a rosy glow on my face and chest…looks a bit like sunburn and feels warm to the touch.
I had a fantastic night sleep and slept from 23:00 through until 06:30 which for me is amazing as since after the operation I usually wake every 2-3 hours to pee throughout the night because of the capacity of the new bladder.
Sleeping that long was great although I will be honest I woke up in a damp puddle in my bed. So the Cisplatinum chemo kept me from waking up naturally with the urge to pee. Next month when I have it again I will have to set my alarm.
Changing bedding has never been a chore I have loved so I will have to prepare more next time. I always have a sanitary towel in my underwear special designed for men that I get free from a medical company here in Holland and the insurance pays. My mattress has also a protector so it is just a sheet change which is no real hassle.
At the very beginning of this journey with my new bladder I was very emotional regarding the incontinence problems and luckily it is something I have just got used too as it now affects little of my life and my daily routine of slipping a towel in my underwear is enough to have a sense of security.
My bladder will stretch over time and the ability to retain more urine will increase allowing me to extend my sleeping pattern and eventually it should become a once a night event. I will be more than happy when this becomes routine as it is with many people with a regular bladder also.
Yesterday was also a great day and I was able to function normally and I took the last of the sickness medicine Emend 80mg along with the Dexamethason. The Dexamethason continues for one more day tomorrow and then I am off the meds until chemo on Tuesday next week.
Later in the after noon yesterday I started to feel a few cold chills along with a slight headache and strange feeling in my head….just like my brain was shivering inside…the rosy glow is still with me and I have noticed that my concentration levels have diminished. None of these feelings are stopping me from functioning or causing any concern to me.
It was great to get out of the house later that evening to a birthday drink with a lovely neighbour friend over the road and I had a delicious wedge of creamy marzipan cake with a dry white wine which I sipped gently and enjoyed very much.
It seemed as though I was present in body and could listen to conversation but was happy ad relaxed to sit back and enjoy rather than participate the way I normally would have with conversation. I was in the presence of people I know very well and was able to sit back and relax with no pressure to do anything. Just what I needed a night out of the house amongst people I love and admire and a way to get away from my thoughts that I would have at home alone in the daytime.
Urologist appointment
My Urology appointment yesterday at 09:10 with my new Urologist went very well and he is very happy with my progress so far since the operation. He was also in total agreement about having the chemo because of my age and health.
I have been offered a course to train muscles in the nether regions to try to control my continence more during the evenings.
At the moment I am 99% continent in the day time unless I have a sneezing or coughing fit J and if I am careful with drinks before bedtime I can be totally continent if I set the alarm every 3 hours for a pee.
I have not so far managed to stick to this routine and drink when I have thirst so I do leak sometimes into my sanitary pad….it just needs more discipline I guess…but I also think what the hell I want to have a life too and have the odd glass of beer or two….a few dribbles I am not going to worry about.
The muscle training course will help though to improve continence to 100% even with a sneeze or cough if I can remember to hold the right muscles…I am sure that will also become second nature.
The prostate and most of the nerves were removed also during the surgery last September and Viagra was also prescribed for impotence problems and have been advised to stimulate my manhood regularly to improve this…..use it or lose it my Urologist said…he is so funny. I have injections I can use also which give an instant erection for one hour or more.
I also have an appointment shortly with my Urologist in the correct injection method to use when I want to use it or lose it……
After the appointment I checked into the Oncology ward for the second round of chemo.
Firstly they hydrated my system with IV fluids for four hours and cleansed the IV with salt solution for 15 minutes. Then I had the IV anti sickness medicine Emend 80mg and Dexamethason 6mg for another 15 minutes also followed up with a 15 minute salt cleanse.
The Cisplatinum was administered over 3 hours through the IV also finishing with a salt solution for 15 minutes. Then I had IV fluid once more for two hours and then the anti sickness meds were repeated for 15 minutes followed by the salt solution for 15 minutes.
After this process had been completed my system was flushed with IV fluids the whole night to protect my kidneys from damaging because of the effect of the Cisplatinum chemo.
I tolerated this chemo very well and had only a slight headache and light headiness.
Waking to the toilet every 30 minutes was taking it out on me a little especially through the night as I only had cat naps and my neighbour sharing my room was snoring all night long.
So I do feel tired but put this down to sleep deprivation so I am off to my bed for a few hours so I have a bit more energy for this evening…..
I have been offered a course to train muscles in the nether regions to try to control my continence more during the evenings.
At the moment I am 99% continent in the day time unless I have a sneezing or coughing fit J and if I am careful with drinks before bedtime I can be totally continent if I set the alarm every 3 hours for a pee.
I have not so far managed to stick to this routine and drink when I have thirst so I do leak sometimes into my sanitary pad….it just needs more discipline I guess…but I also think what the hell I want to have a life too and have the odd glass of beer or two….a few dribbles I am not going to worry about.
The muscle training course will help though to improve continence to 100% even with a sneeze or cough if I can remember to hold the right muscles…I am sure that will also become second nature.
The prostate and most of the nerves were removed also during the surgery last September and Viagra was also prescribed for impotence problems and have been advised to stimulate my manhood regularly to improve this…..use it or lose it my Urologist said…he is so funny. I have injections I can use also which give an instant erection for one hour or more.
I also have an appointment shortly with my Urologist in the correct injection method to use when I want to use it or lose it……
After the appointment I checked into the Oncology ward for the second round of chemo.
Firstly they hydrated my system with IV fluids for four hours and cleansed the IV with salt solution for 15 minutes. Then I had the IV anti sickness medicine Emend 80mg and Dexamethason 6mg for another 15 minutes also followed up with a 15 minute salt cleanse.
The Cisplatinum was administered over 3 hours through the IV also finishing with a salt solution for 15 minutes. Then I had IV fluid once more for two hours and then the anti sickness meds were repeated for 15 minutes followed by the salt solution for 15 minutes.
After this process had been completed my system was flushed with IV fluids the whole night to protect my kidneys from damaging because of the effect of the Cisplatinum chemo.
I tolerated this chemo very well and had only a slight headache and light headiness.
Waking to the toilet every 30 minutes was taking it out on me a little especially through the night as I only had cat naps and my neighbour sharing my room was snoring all night long.
So I do feel tired but put this down to sleep deprivation so I am off to my bed for a few hours so I have a bit more energy for this evening…..
Search and destroy
The first chemo is now doing its search and destroy mission and thankfully it is operating in stealth mode as I have no complaints.
My lovely neighbour and friend drove me to the hospital and stayed with me for my first round. It was advised to be accompanied the first time in case of an adverse reaction which would stop me from driving home. As I had no problems I will drive myself in the future.
As I have a new bladder the capacity to hold urine is very low and I noticed that 15 minutes before the chemo process had finished I was desperate for the loo. I started to get pain in my lower back and a tender feeling in my groin. Luckily I managed to hold on those last few minutes and as soon as I was unhooked I dashed to the loo for a very relieving pee……
It is very stormy here today and the wind and rain are whipping up frenzy. Sounds great upstairs in the bedroom as the wind howls around the house….
Just made dinner before starting this log….vegetable pasta with runner beans and mushrooms finely sliced with garlic and onions and once sautéed I added a tin of chopped tomatoes and a bit of chilli…….at least that is out of the way and now I can relax and think positive thoughts…..
Tomorrow will be a one night stay in hospital for the Cisplatinum chemo and I check in at 10:00 but at 09:00 I have my appointment with the Urologist to see if everything is ok with my new water works…..
My next log probably being on Thursday when I get home or Friday depending on how I feel….till then…
My lovely neighbour and friend drove me to the hospital and stayed with me for my first round. It was advised to be accompanied the first time in case of an adverse reaction which would stop me from driving home. As I had no problems I will drive myself in the future.
As I have a new bladder the capacity to hold urine is very low and I noticed that 15 minutes before the chemo process had finished I was desperate for the loo. I started to get pain in my lower back and a tender feeling in my groin. Luckily I managed to hold on those last few minutes and as soon as I was unhooked I dashed to the loo for a very relieving pee……
It is very stormy here today and the wind and rain are whipping up frenzy. Sounds great upstairs in the bedroom as the wind howls around the house….
Just made dinner before starting this log….vegetable pasta with runner beans and mushrooms finely sliced with garlic and onions and once sautéed I added a tin of chopped tomatoes and a bit of chilli…….at least that is out of the way and now I can relax and think positive thoughts…..
Tomorrow will be a one night stay in hospital for the Cisplatinum chemo and I check in at 10:00 but at 09:00 I have my appointment with the Urologist to see if everything is ok with my new water works…..
My next log probably being on Thursday when I get home or Friday depending on how I feel….till then…
Wednesday 9 July 2008
Calvados and cola
Today I met up with my oncologist who will be overseeing the chemo treatment over the next 4 months. He is a really gentle guy that made me feel very comfortable. My life over the next 4 months will be in his hands so I guess it is important to feel comfortable with your doctor.
My results from the blood tests were good and nothing to worry about and I also had a physical and I passed with flying colours so the chemo will definitely go ahead tomorrow as planned.
I was packed off home with a prescription for the anti sickness and steroid medication that I will have to take for a few days after each chemo treatment.
Fortunately for me medical science has advanced enough to have good medicine to reduce the evil side effects of chemo……well at least reduce the effects sometimes….
When I went to my pharmacy they only had the steroids and not the anti sickness meds. They have ordered them for me and I will have to go back tomorrow to pick them up.
My mind is constantly making scenarios up of how I will deal with this treatment and I am trying so hard to make them positive thoughts. I am not scared of the chemo as I know that it may give me a chance at a longer life.
It isn’t until we face our own mortality that it becomes clear how important and short life really is and how much we will do to maintain our existence.
The oncologist said to me today that it is very rare for someone so young to get bladder cancer as it normally affects men or women in later life. I was asked if I had ever worked in a chemical factory and my answer was no…..but I did explain to him that I have used many chemicals on my hair over the years trying to achieve that Californian beach look that always looked fabulous on me…..he just laughed…
So it is my last night of freedom in a way and to take the edge off I have just downed a large glass of calvados and cola and it was very nice so I am going to have another….Dutch courage for tomorrow……
My results from the blood tests were good and nothing to worry about and I also had a physical and I passed with flying colours so the chemo will definitely go ahead tomorrow as planned.
I was packed off home with a prescription for the anti sickness and steroid medication that I will have to take for a few days after each chemo treatment.
Fortunately for me medical science has advanced enough to have good medicine to reduce the evil side effects of chemo……well at least reduce the effects sometimes….
When I went to my pharmacy they only had the steroids and not the anti sickness meds. They have ordered them for me and I will have to go back tomorrow to pick them up.
My mind is constantly making scenarios up of how I will deal with this treatment and I am trying so hard to make them positive thoughts. I am not scared of the chemo as I know that it may give me a chance at a longer life.
It isn’t until we face our own mortality that it becomes clear how important and short life really is and how much we will do to maintain our existence.
The oncologist said to me today that it is very rare for someone so young to get bladder cancer as it normally affects men or women in later life. I was asked if I had ever worked in a chemical factory and my answer was no…..but I did explain to him that I have used many chemicals on my hair over the years trying to achieve that Californian beach look that always looked fabulous on me…..he just laughed…
So it is my last night of freedom in a way and to take the edge off I have just downed a large glass of calvados and cola and it was very nice so I am going to have another….Dutch courage for tomorrow……
Home alone
Home alone:
Now that the operation is all over I have no regrets for choosing to have the neo bladder. I would be lying if I said it was easy it certainly was not.
At times during my first few days I did have lots of regrets and thought I had made a big mistake for choosing the neo bladder. The other operation for the stoma bag would have been easier on my body and the recovery time much quicker. However I came through it all and I am alive and I am so very thankful and appreciative.
I take my hat off to all of the people involved in helping and supporting me for getting through the last 6 weeks.
Urologist appointment:
It is now two months after my operation and I am back to the hospital for my check-up. Thankfully everything has been really fine, my neo bladder has been working perfectly and my urologist is very happy.
My once a day catheterization has now been changed to once a week for the duration. Apparently this is to maintain neo bladder health and reduces the chance of bladder stones and infections.
I was asked to provide a blood and urine samples and an appointment for a CT scan has been arranged in a couple of weeks on the 29th November.
CT scan:
I had my scan today and it was the usual scan of the torso. I will get the results on the 12th December. I am also extremely happy to report that I am 99% continent in the day time and 95% at night. I still wear a protection pad in my underwear in the daytime and night time….just in case.
My plans are to go back to work as soon as possible. Just waiting now for the results of the CT scan and if any adjuvant chemotherapy is required before I make that decision.
Now that the operation is all over I have no regrets for choosing to have the neo bladder. I would be lying if I said it was easy it certainly was not.
At times during my first few days I did have lots of regrets and thought I had made a big mistake for choosing the neo bladder. The other operation for the stoma bag would have been easier on my body and the recovery time much quicker. However I came through it all and I am alive and I am so very thankful and appreciative.
I take my hat off to all of the people involved in helping and supporting me for getting through the last 6 weeks.
Urologist appointment:
It is now two months after my operation and I am back to the hospital for my check-up. Thankfully everything has been really fine, my neo bladder has been working perfectly and my urologist is very happy.
My once a day catheterization has now been changed to once a week for the duration. Apparently this is to maintain neo bladder health and reduces the chance of bladder stones and infections.
I was asked to provide a blood and urine samples and an appointment for a CT scan has been arranged in a couple of weeks on the 29th November.
CT scan:
I had my scan today and it was the usual scan of the torso. I will get the results on the 12th December. I am also extremely happy to report that I am 99% continent in the day time and 95% at night. I still wear a protection pad in my underwear in the daytime and night time….just in case.
My plans are to go back to work as soon as possible. Just waiting now for the results of the CT scan and if any adjuvant chemotherapy is required before I make that decision.
Home
Home:
I spent 10 days at home with my two catheters and it was a very slow process building up my strength day by day. Walking around the living room or visiting the toilet was enough to feel exhausted.
During these 10 days at home I had a great support network to help me which is so important. Rest and relaxation was the order from the doctor and eating as much as possible to get my strength back.
During my 22 day hospital stay I lost 14 kilo’s in weight and it took a good week before I noticed that I was filling out again and not so gaunt.
I truly believe that getting to your home environment really improves your physical wellbeing and I vastly improved in body and mind during this time at home.
Catheter removal:
I was admitted back into hospital for the removal of the catheters and to be given instructions and advise on how to self catheter.
The first day the catheter in my penis was removed I was totally incontinent. I was told this would be the case for a few days and that I would slowly learn how to hold the urine myself.
I spent this first day in a nappy until I had this under control. The first time I self catheterized was very uncomfortable and I kind of got stuck half way and when the nurse tried she got stuck at the same point.
That day the nurses and Urologist tried 8 times to insert a catheter with no success. This did not give me a very good impression...and they expected me to do it alone at home twice a day.
As you can imagine my urinary tract was pretty sore and I was not looking forward to any more attempts. A cystoscopy was scheduled to see if I had a blockage; the cystoscopy went straight into the neo bladder with no problem. The Urologist turned the monitor to me so I could watch him do it again and follow the path of the urinary tract.
Later that day I tried again with a different catheter that turned up slightly at the end which helped me get around my bend. It is not a pleasant experience when I self catheterize although it has become a lot easier with time.
Luckily from day one of removal of the catheter I have been able to urinate in the regular way with ought the need to catheterize. Granted I had little control over the urine but by the second day the improvements were remarkable and I was a very happy to get out of the nappies.
If this continued I would only need to catheterize once a day to cleanse my new bladder which sounded great to me.
Day two and I had the regular catheter replaced back into my penis so that the other catheter could be removed from my navel which was connected to the top of my bladder. This had to heal for 24 hours before the regular catheter was removed once more.
At this point I was free of all tubes for the first time in over a month.Urinating every two hours was instilled in me by the nurses.
I had lots of accidents in the beginning and mostly with standing up or coughing and sneezing. Sanitary towels came in handy and replaced regularly initially. On day three I was packed off home with my new bladder and with my catheter pack and syringes and bottles of saline in tow.
I spent 10 days at home with my two catheters and it was a very slow process building up my strength day by day. Walking around the living room or visiting the toilet was enough to feel exhausted.
During these 10 days at home I had a great support network to help me which is so important. Rest and relaxation was the order from the doctor and eating as much as possible to get my strength back.
During my 22 day hospital stay I lost 14 kilo’s in weight and it took a good week before I noticed that I was filling out again and not so gaunt.
I truly believe that getting to your home environment really improves your physical wellbeing and I vastly improved in body and mind during this time at home.
Catheter removal:
I was admitted back into hospital for the removal of the catheters and to be given instructions and advise on how to self catheter.
The first day the catheter in my penis was removed I was totally incontinent. I was told this would be the case for a few days and that I would slowly learn how to hold the urine myself.
I spent this first day in a nappy until I had this under control. The first time I self catheterized was very uncomfortable and I kind of got stuck half way and when the nurse tried she got stuck at the same point.
That day the nurses and Urologist tried 8 times to insert a catheter with no success. This did not give me a very good impression...and they expected me to do it alone at home twice a day.
As you can imagine my urinary tract was pretty sore and I was not looking forward to any more attempts. A cystoscopy was scheduled to see if I had a blockage; the cystoscopy went straight into the neo bladder with no problem. The Urologist turned the monitor to me so I could watch him do it again and follow the path of the urinary tract.
Later that day I tried again with a different catheter that turned up slightly at the end which helped me get around my bend. It is not a pleasant experience when I self catheterize although it has become a lot easier with time.
Luckily from day one of removal of the catheter I have been able to urinate in the regular way with ought the need to catheterize. Granted I had little control over the urine but by the second day the improvements were remarkable and I was a very happy to get out of the nappies.
If this continued I would only need to catheterize once a day to cleanse my new bladder which sounded great to me.
Day two and I had the regular catheter replaced back into my penis so that the other catheter could be removed from my navel which was connected to the top of my bladder. This had to heal for 24 hours before the regular catheter was removed once more.
At this point I was free of all tubes for the first time in over a month.Urinating every two hours was instilled in me by the nurses.
I had lots of accidents in the beginning and mostly with standing up or coughing and sneezing. Sanitary towels came in handy and replaced regularly initially. On day three I was packed off home with my new bladder and with my catheter pack and syringes and bottles of saline in tow.
Radical Cystectomy Part 2
Radical Cystectomy Part 2:
On the sixth day my intestines were still sleeping and then the central line came into action as they decided to feed me using this method. They used a special liquid food that absorbs into the blood and systems. This method continued for several more days as my intestines decided to take a holiday also and refused to come on line. Of course I received all important nutrients and vitamins to sustain life. This however did not stop my body weight melting away.
It was the little things that meant so much to me giving me a sign of hope that I would be going home soon. Every morning I would be eagerly waiting for news that a drain tube may be removed or the central line tube or something. And slowly but surely over the two weeks one by one the tubes were removed.
Pathology reports from the operation confirmed that two lymph nodes had cancer cells in them and chemotherapy was advised once I had recovered from the operation.
Finally on the 14th day after surgery my stomach and intestines started to work in harmony and I drank liquids for the first time in two weeks. The next day I could have yogurt and custard and in the evening I had a chicken sandwich which was very hard to swallow but dipped into warm tomato soup went down very well. The small little things that I took for granted I was so grateful for and I must have said thank you in my head a million times.
Things were going really well until I had a little set back when my abdomen became very swollen and painful. I had a CT scan and it was confirmed that I had fluid in my abdomen which was probably a leak from the neo bladder. That same day I had a new drain put in very low in my pelvic area and several bags of fluid were drained from my pelvic area. The liquid draining off into the bags was a mixture of urine and wound liquid and I was observed very closely as my temperature hit the high zone on many occasions and antibiotics were used for fighting infection.
It was very disheartening and my hospital stay had turned into a marathon. I was warned at the very beginning that if all goes well 10 days was the average hospital stay with no complications. At the end of the day I was happy to be alive and I could see a little progress daily.
On day 22 I was allowed to go home with two catheters in tow I was still weak and even the little things were exhausting but I had a great support network helping me.
My home was a couple of hours away by car and the journey home was great although very painful as every bump in the road sent shock waves through my body. Finally home with my loved ones and I cried and cried and cried. All the emotions of the last few months came out and it felt so good. My neighbours hung balloons outside the house as a welcome home which added to the emotional tears of joy and pain and sadness.
On the sixth day my intestines were still sleeping and then the central line came into action as they decided to feed me using this method. They used a special liquid food that absorbs into the blood and systems. This method continued for several more days as my intestines decided to take a holiday also and refused to come on line. Of course I received all important nutrients and vitamins to sustain life. This however did not stop my body weight melting away.
It was the little things that meant so much to me giving me a sign of hope that I would be going home soon. Every morning I would be eagerly waiting for news that a drain tube may be removed or the central line tube or something. And slowly but surely over the two weeks one by one the tubes were removed.
Pathology reports from the operation confirmed that two lymph nodes had cancer cells in them and chemotherapy was advised once I had recovered from the operation.
Finally on the 14th day after surgery my stomach and intestines started to work in harmony and I drank liquids for the first time in two weeks. The next day I could have yogurt and custard and in the evening I had a chicken sandwich which was very hard to swallow but dipped into warm tomato soup went down very well. The small little things that I took for granted I was so grateful for and I must have said thank you in my head a million times.
Things were going really well until I had a little set back when my abdomen became very swollen and painful. I had a CT scan and it was confirmed that I had fluid in my abdomen which was probably a leak from the neo bladder. That same day I had a new drain put in very low in my pelvic area and several bags of fluid were drained from my pelvic area. The liquid draining off into the bags was a mixture of urine and wound liquid and I was observed very closely as my temperature hit the high zone on many occasions and antibiotics were used for fighting infection.
It was very disheartening and my hospital stay had turned into a marathon. I was warned at the very beginning that if all goes well 10 days was the average hospital stay with no complications. At the end of the day I was happy to be alive and I could see a little progress daily.
On day 22 I was allowed to go home with two catheters in tow I was still weak and even the little things were exhausting but I had a great support network helping me.
My home was a couple of hours away by car and the journey home was great although very painful as every bump in the road sent shock waves through my body. Finally home with my loved ones and I cried and cried and cried. All the emotions of the last few months came out and it felt so good. My neighbours hung balloons outside the house as a welcome home which added to the emotional tears of joy and pain and sadness.
Radical Cystectomy Part1
Radical Cystectomy Part 1:
The operation was scheduled on September 14th and two days prior to this I was admitted for pre-op tests which included blood samples and a few x-rays of my chest. All of which were necessary to ensure I was in good health for this major surgery.
I was very luckily allocated a single room with shower and toilet facilities, a lottery I am told in Holland.
On the second day of admission I literally spent the whole day visiting the toilet as I had to cleanse my bowels prior to surgery the following morning. They gave me a lemon tasting drink and I had to drink three litres of this fluid to ensure my bowels were cleaned. Even the nurse wanted to see my last bowel movement to ensure that it was clear and clean. I guess this is very important as they were going to be cutting out a good meter of small intestine to make my new bladder.
The stoma nurse made a visit today and placed a dot on my lower abdomen right of my navel in the event the surgeons are unable to construct a neo bladder.
I did not sleep very well this night before the big op with all the positive and negative thoughts fighting together in my mind. I spent most of my time writing cards to loved ones just in case of worse case scenarios. Strange things enter your mind before having any surgery. The usually worry of am I going to wake up after major surgery and a long general anaesthetic praying on my mind.
I did manage to get a few hours sleep after all and I was awoken with my alarm at 06:00 and I jumped into the shower and started to shave my torso as requested by the nurse the night before.
When I came out of the shower room my bed was made up with fresh bedding and waiting for me was a backless green gown and a pair of stockings to be worn as a protection against thrombosis.
In a tiny plastic cup next to my bed was a tablet to calm my nerves before the operation. It literally took a few minutes before I felt the medication doing its job. I think not eating for two days also helped in this process…
So hear I am all shaved and fruity clean externally and internally waiting patiently for my surgery. It was not long before they came and wheeled me down to the theatre. Within minutes of arriving I was in a deep anaesthetic sleep.
Eight and a half hours of surgery later I was wheeled into a high dependency ward for observation. I was attached to many machines checking the usual body rhythms. I was also on a breathing machine which was a great surprise to me later.
When I finally woke I remember being told that all went well and I had received the neo bladder. I felt no pain although I did not try to move too much because I was aware that I was attached to various machines and tubes and bags.
My first night in this high dependency ward went very well. My blood pressure was high and as soon as it lowered to near normal levels I could be taken back to the Urology ward.
A good night sleep was not an option this evening as the noise from the machines is just so noisy and irritating. So I spent the evening watching the TV and staff and falling in and out of sleep.
My second day on this ward was very short as I was to be moved back to Urology….just enough time for Diane the wonderful nurse to clean me up a bit and shave me. It was impossible at this point to do this myself as so weak and bedridden.
This was the first opportunity I had to see the wound and tubes coming out of my body. I had two tubes in my right nostril going into my stomach. One for sucking out stomach acid and one that would later feed me. I had a tube about an inch thick coming out of my abdomen left side which was a wound drain. Also on my left side just under the wound drain I had two tiny tubes leading into a bag which were the stents from my kidneys. Between my belly button and pubic line I had a catheter leading from the top of my new bladder and I also had a regular catheter from my penis. A central line was placed in my neck on the left side and a stapled scar line two inches above my belly button to literally a few millimetres from my penis.
So I am now in my room on the Urology ward and getting over the shock of looking like Frankenstein. I am told that all is going well although I do feel more pain today than yesterday.
My pain medication was delivered constantly through my back with what I guess is like an epidural.The pain was increasing gradually and the nurse called for a member of staff from anaesthetics to come up and see me. He placed cold sponges on my torso which alerted him of the areas that were not treated affectively by the pain medication. Basically my whole left side was not benefiting and I was in great pain for a while. I received a morphine shot until they could sort the problem out.
Due to problems with the needle in my back they resorted to a morphine pump which I could use myself. This worked very well in the beginning but by the third day I was hallucinating very badly and they had to change the morphine to a different type. The hallucinations were mostly bad at night when I was alone and sometimes very scary. My doctor could not confirm if it was the medication or lack of food that was causing the hallucinations.
Everything continued as normal around me and I was allowed to sit up in bed and dangle my feet over the edge. Of course I wanted to take this further and asked if I could stand. This went very well although exhausting and as soon as my head hit the pillow I was sleeping.
This operation really does take a lot out of you and I am a person that is very independent and I had to learn very quickly to give control over to my care givers. During the times the nurses cleaned me I too would take an active role in assisting them and I noticed daily I could do more and more.
I was warned that the 4th day is the hurdle to get over and for me this was so true. Management of the pain medications had its hiccups and eventually on the fourth day I refused the morphine and was using only paracetamol and anti inflammatory and the pain was bearable.
The hallucinations were far worse for me which stopped soon after stopping the morphine.Also on this fourth day after surgery they tried to give me a liquid feed in my nasal tube but after a few hours it was rejected by my body and came straight out of the other stomach tube. My intestines were just not ready for any food or drink yet.
It is so very hard when you have a great thirst and the only option was a tiny sip of water to wet your mouth or the odd ice cube which was always heaven on earth. Something so simple can give so much pleasure and my lip balm helped with dry lips.
The operation was scheduled on September 14th and two days prior to this I was admitted for pre-op tests which included blood samples and a few x-rays of my chest. All of which were necessary to ensure I was in good health for this major surgery.
I was very luckily allocated a single room with shower and toilet facilities, a lottery I am told in Holland.
On the second day of admission I literally spent the whole day visiting the toilet as I had to cleanse my bowels prior to surgery the following morning. They gave me a lemon tasting drink and I had to drink three litres of this fluid to ensure my bowels were cleaned. Even the nurse wanted to see my last bowel movement to ensure that it was clear and clean. I guess this is very important as they were going to be cutting out a good meter of small intestine to make my new bladder.
The stoma nurse made a visit today and placed a dot on my lower abdomen right of my navel in the event the surgeons are unable to construct a neo bladder.
I did not sleep very well this night before the big op with all the positive and negative thoughts fighting together in my mind. I spent most of my time writing cards to loved ones just in case of worse case scenarios. Strange things enter your mind before having any surgery. The usually worry of am I going to wake up after major surgery and a long general anaesthetic praying on my mind.
I did manage to get a few hours sleep after all and I was awoken with my alarm at 06:00 and I jumped into the shower and started to shave my torso as requested by the nurse the night before.
When I came out of the shower room my bed was made up with fresh bedding and waiting for me was a backless green gown and a pair of stockings to be worn as a protection against thrombosis.
In a tiny plastic cup next to my bed was a tablet to calm my nerves before the operation. It literally took a few minutes before I felt the medication doing its job. I think not eating for two days also helped in this process…
So hear I am all shaved and fruity clean externally and internally waiting patiently for my surgery. It was not long before they came and wheeled me down to the theatre. Within minutes of arriving I was in a deep anaesthetic sleep.
Eight and a half hours of surgery later I was wheeled into a high dependency ward for observation. I was attached to many machines checking the usual body rhythms. I was also on a breathing machine which was a great surprise to me later.
When I finally woke I remember being told that all went well and I had received the neo bladder. I felt no pain although I did not try to move too much because I was aware that I was attached to various machines and tubes and bags.
My first night in this high dependency ward went very well. My blood pressure was high and as soon as it lowered to near normal levels I could be taken back to the Urology ward.
A good night sleep was not an option this evening as the noise from the machines is just so noisy and irritating. So I spent the evening watching the TV and staff and falling in and out of sleep.
My second day on this ward was very short as I was to be moved back to Urology….just enough time for Diane the wonderful nurse to clean me up a bit and shave me. It was impossible at this point to do this myself as so weak and bedridden.
This was the first opportunity I had to see the wound and tubes coming out of my body. I had two tubes in my right nostril going into my stomach. One for sucking out stomach acid and one that would later feed me. I had a tube about an inch thick coming out of my abdomen left side which was a wound drain. Also on my left side just under the wound drain I had two tiny tubes leading into a bag which were the stents from my kidneys. Between my belly button and pubic line I had a catheter leading from the top of my new bladder and I also had a regular catheter from my penis. A central line was placed in my neck on the left side and a stapled scar line two inches above my belly button to literally a few millimetres from my penis.
So I am now in my room on the Urology ward and getting over the shock of looking like Frankenstein. I am told that all is going well although I do feel more pain today than yesterday.
My pain medication was delivered constantly through my back with what I guess is like an epidural.The pain was increasing gradually and the nurse called for a member of staff from anaesthetics to come up and see me. He placed cold sponges on my torso which alerted him of the areas that were not treated affectively by the pain medication. Basically my whole left side was not benefiting and I was in great pain for a while. I received a morphine shot until they could sort the problem out.
Due to problems with the needle in my back they resorted to a morphine pump which I could use myself. This worked very well in the beginning but by the third day I was hallucinating very badly and they had to change the morphine to a different type. The hallucinations were mostly bad at night when I was alone and sometimes very scary. My doctor could not confirm if it was the medication or lack of food that was causing the hallucinations.
Everything continued as normal around me and I was allowed to sit up in bed and dangle my feet over the edge. Of course I wanted to take this further and asked if I could stand. This went very well although exhausting and as soon as my head hit the pillow I was sleeping.
This operation really does take a lot out of you and I am a person that is very independent and I had to learn very quickly to give control over to my care givers. During the times the nurses cleaned me I too would take an active role in assisting them and I noticed daily I could do more and more.
I was warned that the 4th day is the hurdle to get over and for me this was so true. Management of the pain medications had its hiccups and eventually on the fourth day I refused the morphine and was using only paracetamol and anti inflammatory and the pain was bearable.
The hallucinations were far worse for me which stopped soon after stopping the morphine.Also on this fourth day after surgery they tried to give me a liquid feed in my nasal tube but after a few hours it was rejected by my body and came straight out of the other stomach tube. My intestines were just not ready for any food or drink yet.
It is so very hard when you have a great thirst and the only option was a tiny sip of water to wet your mouth or the odd ice cube which was always heaven on earth. Something so simple can give so much pleasure and my lip balm helped with dry lips.
TURB
TURB:
Once admitted into the hospital later that day I was given directions to my Urology ward and I was allocated into a room with four other beds. It was not long before they called my name and said that it was time.
The procedure was done by local anaesthetic by inserting a needle in my back and after 15 minutes I had no feeling from the waist down. The procedure was very quick just 30 minutes and very similar to the cystoscopy only this time with tools to scrape the growth and burn the wound closed.
On the ceiling of the operating room hung a large reflective mirror and I could see all the theatre staff at work. This was really weird and although with body and soul present for the event, in a way in my mind I was watching from afar.
It became uncomfortable during the procedure and I requested extra pain medication. I was given an injection and my next memories were waking up in the recovery room.
Shortly after I was taken back to the ward, I had no pain and was happy it was over. I had a catheter in my penis and was told that my bladder was filled with a chemotherapy rinse to kill any cancer cells that may have been scattered around during surgery.
Nurses attending me were wearing protective clothing when checking the catheter bag. The full bags of bloody urine were placed into a special box next to my bed for chemical waste.
I could eat and drink anything although advised to drink as much as possible to flush out my system.
I had a great night sleep until I was awoken at 06:00 to have my catheter removed. This really did not hurt at all...the thought of having my first pee was what I was worried about.
Of course it was not long before I had to pee and yes it was painful just like rubbing salt or lemon into a wound but it was bearable. It was just a very intense burning sensation that slowly diminished after I finished urinating. Once my urine was clear of blood which was around late morning I was allowed to go home.
It took two weeks for all the pain during urination to completely go away and occasionally I would pee out a small blood clot or scab from the healing wound. This apparently is very normal and part and parcel of the healing process.
CT scan:
A CT scan was scheduled in late June 2007 which was a series of scans to cover the pelvic and abdominal area.
I had to drink x2 500ml bottles of contrast fluid before I came to the appointment. On arrival I had to drink one more bottle which nearly made me vomit. It just did not taste great...a kind of metal taste.
They inserted an intravenous drip and put a tube up my bum both of which were fed more of the contrast fluid for the different kind of CT scans they needed.
After the scan was completed which took roughly 30 minutes I had to visit the toilet to get rid of the fluid fed into my bum.
Scan and Pathology results:
Two days later I had an appointment with my Urologist for the results. I am so glad I was not alone. The CT scan and pathological reports confirmed invasive bladder cancer.
The solution offered for type of cancer was for a radical cystectomy with neo bladder.
Second Opinion:
After a few days of information searching on the internet I came across the blc web cafe which I found to be very helpful.
Just reading the experiences of others was enough to make me feel like I was no longer alone in my battle. I read a post on second opinions and decided this is what I should do also and took the steps needed to make that happen.
It took around two weeks to get an appointment with another Urologist in a larger medical centre. The diagnosis and treatment offered was exactly the same which I had expected. Of course I was hoping for a different outcome…it was a big mistake would have been great!!
It did however confirm it more psychologically that this was the best option in my situation for a chance at a longer life.
Once admitted into the hospital later that day I was given directions to my Urology ward and I was allocated into a room with four other beds. It was not long before they called my name and said that it was time.
The procedure was done by local anaesthetic by inserting a needle in my back and after 15 minutes I had no feeling from the waist down. The procedure was very quick just 30 minutes and very similar to the cystoscopy only this time with tools to scrape the growth and burn the wound closed.
On the ceiling of the operating room hung a large reflective mirror and I could see all the theatre staff at work. This was really weird and although with body and soul present for the event, in a way in my mind I was watching from afar.
It became uncomfortable during the procedure and I requested extra pain medication. I was given an injection and my next memories were waking up in the recovery room.
Shortly after I was taken back to the ward, I had no pain and was happy it was over. I had a catheter in my penis and was told that my bladder was filled with a chemotherapy rinse to kill any cancer cells that may have been scattered around during surgery.
Nurses attending me were wearing protective clothing when checking the catheter bag. The full bags of bloody urine were placed into a special box next to my bed for chemical waste.
I could eat and drink anything although advised to drink as much as possible to flush out my system.
I had a great night sleep until I was awoken at 06:00 to have my catheter removed. This really did not hurt at all...the thought of having my first pee was what I was worried about.
Of course it was not long before I had to pee and yes it was painful just like rubbing salt or lemon into a wound but it was bearable. It was just a very intense burning sensation that slowly diminished after I finished urinating. Once my urine was clear of blood which was around late morning I was allowed to go home.
It took two weeks for all the pain during urination to completely go away and occasionally I would pee out a small blood clot or scab from the healing wound. This apparently is very normal and part and parcel of the healing process.
CT scan:
A CT scan was scheduled in late June 2007 which was a series of scans to cover the pelvic and abdominal area.
I had to drink x2 500ml bottles of contrast fluid before I came to the appointment. On arrival I had to drink one more bottle which nearly made me vomit. It just did not taste great...a kind of metal taste.
They inserted an intravenous drip and put a tube up my bum both of which were fed more of the contrast fluid for the different kind of CT scans they needed.
After the scan was completed which took roughly 30 minutes I had to visit the toilet to get rid of the fluid fed into my bum.
Scan and Pathology results:
Two days later I had an appointment with my Urologist for the results. I am so glad I was not alone. The CT scan and pathological reports confirmed invasive bladder cancer.
The solution offered for type of cancer was for a radical cystectomy with neo bladder.
Second Opinion:
After a few days of information searching on the internet I came across the blc web cafe which I found to be very helpful.
Just reading the experiences of others was enough to make me feel like I was no longer alone in my battle. I read a post on second opinions and decided this is what I should do also and took the steps needed to make that happen.
It took around two weeks to get an appointment with another Urologist in a larger medical centre. The diagnosis and treatment offered was exactly the same which I had expected. Of course I was hoping for a different outcome…it was a big mistake would have been great!!
It did however confirm it more psychologically that this was the best option in my situation for a chance at a longer life.
Initial Symptoms
My story started in the spring of 2007.
Symptoms:
The initial symptoms that I noticed was that my need to urinate increased and the flow of my urine became intermittent instead of the usual constant flow. The last few drops of my urine were also pink in colour.
Doctors Appointments:
I assumed I had a urinary infection and made an appointment at my doctor. The doctor was not concerned by the changes in urination I had mentioned. I gave a sample of my urine for testing and it came back negative for infection and blood.
The symptoms continued for another month and the blood in my urine was still present. I was jumping to all sorts of conclusions and it was playing on my mind so I made another appointment at my doctor.
This time the test was positive for infection and blood and my doctor prescribed a one month course of antibiotics. This did help to clear up my symptoms initially until the last week of my antibiotic course the problems of urination and blood returned.
I returned to my doctor and explained to him that the medication was not working. I was thinking of the worse case scenario in my head, that I may have cancer of the bladder. I was at a higher risk because of cancer deaths in my family although none of them by bladder cancer.
When I mentioned this he brushed my worries aside and said it was impossible I was too young to get bladder cancer. He recommended continuing with the medication as bladder infections sometimes need weeks of antibiotics.
The one month antibiotic course had finished and symptoms remained and I decided to press on the issue at my next doctor’s visit and demanded to see a specialist.
Urologist Appointment:
Two weeks later I was lying on bed in a Urology department having my prostate checked by the Urologist with an internal echo scan. He said that he saw nothing unusual on the prostate except that it was enlarged. He asked me to come back the following week for a cystoscopy to check my bladder.
Cystoscopy:
The thought of having a flexible tube inserted into my penis and pushed through into my bladder kind of freaked me out the whole week. The information they gave me to read and the info I found online did not help either. It was obviously going to be uncomfortable and I would have to grin and bare it.
It was not a pleasant experience; I was lead into the room and asked to take off my trousers and underwear. Then led into the next room with the cystoscopy equipment and asked to sit in a chair and put my legs into the side straps to hold my legs open. The nurse cleaned the head of my penis with something cold and watery and then inserted some lubricating jelly into my penis. A clip was then put on the end of my penis to stop the jelly coming out.
The Urologist then entered the room and started the procedure which went well up until the point that he reached my prostate and I then clenched down on the scope because of the very strange feeling and tried to grab his hands to pull it out.
He told me to take a few deep breaths place my bum back on the chair and with that distraction he pushed on through into my bladder. It literally took him 30 seconds and he said ok we are done and started to retract the scope...retraction was the easy part. He asked me to get dressed and meet him in his office.
Diagnosis:
He was very direct and honest and said I am sorry to tell you that you have a malignant cancer growth of about 2cm in your bladder and it looked like the shape of a tiny cauliflower.
At this point I just stepped into another dimension and my life has never been the same since. He recommended a TURB operation to remove the cancer growth. He could schedule me in a couple of weeks which freaked me out as I wanted the cancer out and now!!
I begged him to see me straight away and luckily for me he made a few calls and a bed was available. I was scheduled the same day later that afternoon once he had finished his patient list schedule that day.
This cancer growth had probably been growing inside me for a few years already. Waiting two weeks for the operation would not have been a problem. Although a nightmare for me as I would just worry that the cancer was spreading around my body even more.
I walked out of the hospital and walked to the car park and sat in my car and just gathered my thoughts for a while. I made a few phone calls to deliver the news to loved ones.
Needless to say the short drive home was in automatic mode as my mind wondered into deep dark places. I even arranged my funeral in my mind on the short drive home. Picking out music that could be played and wondering how family would get over from the UK to Holland for the funeral.
Symptoms:
The initial symptoms that I noticed was that my need to urinate increased and the flow of my urine became intermittent instead of the usual constant flow. The last few drops of my urine were also pink in colour.
Doctors Appointments:
I assumed I had a urinary infection and made an appointment at my doctor. The doctor was not concerned by the changes in urination I had mentioned. I gave a sample of my urine for testing and it came back negative for infection and blood.
The symptoms continued for another month and the blood in my urine was still present. I was jumping to all sorts of conclusions and it was playing on my mind so I made another appointment at my doctor.
This time the test was positive for infection and blood and my doctor prescribed a one month course of antibiotics. This did help to clear up my symptoms initially until the last week of my antibiotic course the problems of urination and blood returned.
I returned to my doctor and explained to him that the medication was not working. I was thinking of the worse case scenario in my head, that I may have cancer of the bladder. I was at a higher risk because of cancer deaths in my family although none of them by bladder cancer.
When I mentioned this he brushed my worries aside and said it was impossible I was too young to get bladder cancer. He recommended continuing with the medication as bladder infections sometimes need weeks of antibiotics.
The one month antibiotic course had finished and symptoms remained and I decided to press on the issue at my next doctor’s visit and demanded to see a specialist.
Urologist Appointment:
Two weeks later I was lying on bed in a Urology department having my prostate checked by the Urologist with an internal echo scan. He said that he saw nothing unusual on the prostate except that it was enlarged. He asked me to come back the following week for a cystoscopy to check my bladder.
Cystoscopy:
The thought of having a flexible tube inserted into my penis and pushed through into my bladder kind of freaked me out the whole week. The information they gave me to read and the info I found online did not help either. It was obviously going to be uncomfortable and I would have to grin and bare it.
It was not a pleasant experience; I was lead into the room and asked to take off my trousers and underwear. Then led into the next room with the cystoscopy equipment and asked to sit in a chair and put my legs into the side straps to hold my legs open. The nurse cleaned the head of my penis with something cold and watery and then inserted some lubricating jelly into my penis. A clip was then put on the end of my penis to stop the jelly coming out.
The Urologist then entered the room and started the procedure which went well up until the point that he reached my prostate and I then clenched down on the scope because of the very strange feeling and tried to grab his hands to pull it out.
He told me to take a few deep breaths place my bum back on the chair and with that distraction he pushed on through into my bladder. It literally took him 30 seconds and he said ok we are done and started to retract the scope...retraction was the easy part. He asked me to get dressed and meet him in his office.
Diagnosis:
He was very direct and honest and said I am sorry to tell you that you have a malignant cancer growth of about 2cm in your bladder and it looked like the shape of a tiny cauliflower.
At this point I just stepped into another dimension and my life has never been the same since. He recommended a TURB operation to remove the cancer growth. He could schedule me in a couple of weeks which freaked me out as I wanted the cancer out and now!!
I begged him to see me straight away and luckily for me he made a few calls and a bed was available. I was scheduled the same day later that afternoon once he had finished his patient list schedule that day.
This cancer growth had probably been growing inside me for a few years already. Waiting two weeks for the operation would not have been a problem. Although a nightmare for me as I would just worry that the cancer was spreading around my body even more.
I walked out of the hospital and walked to the car park and sat in my car and just gathered my thoughts for a while. I made a few phone calls to deliver the news to loved ones.
Needless to say the short drive home was in automatic mode as my mind wondered into deep dark places. I even arranged my funeral in my mind on the short drive home. Picking out music that could be played and wondering how family would get over from the UK to Holland for the funeral.
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