Friday 23 April 2010
Last Blog
Dearest Blogger friends .Today will be my last blog .I have decided today will be my last day to say goodbye to you all.I would just like to thank you all for all your kind words and support over the last months .Today my Doctors will come and end my life . Until we all meet again my spirit will live on through your kind words and wisdom . Thank you very much everybody and I wish you all LOVE , GOOD HEALTH and HAPPINESS . Goodbye Leigh x x
Saturday 17 April 2010
Palliative care....
I spent the night in the hospital Thursday 15th - 16th because of pain in my legs.
I had an MRI of my spinal cord and they found pressure points on my nerves causing the pain.
They have started me on morphine plasters to change every three days and now I have good pain relief and I can walk again.
On Monday I will start palliative radiotheraphy on a few places along my spine to help with the pain.
xxx Leigh
I had an MRI of my spinal cord and they found pressure points on my nerves causing the pain.
They have started me on morphine plasters to change every three days and now I have good pain relief and I can walk again.
On Monday I will start palliative radiotheraphy on a few places along my spine to help with the pain.
xxx Leigh
Wednesday 14 April 2010
Reunion
Yesterday 13th, I had a reunion with three lovely ladies....
We have not seen each other for around 13 years or more...Pearl and Anita and I used to fly together at BMI British Midland and Rosie whom I became very close too when I flew with her Brother Alan my best friend.
They took the boat over to Oostend spent the night in Brugge and poppped over to see little old me.
They all looked fab and had not aged at all.....Botox does wonders though eh!! lol
Catching up on old stories and looking at photo's......wonderful.......
I love you all and thank you for that special day so much.....
xxx leigh
We have not seen each other for around 13 years or more...Pearl and Anita and I used to fly together at BMI British Midland and Rosie whom I became very close too when I flew with her Brother Alan my best friend.
They took the boat over to Oostend spent the night in Brugge and poppped over to see little old me.
They all looked fab and had not aged at all.....Botox does wonders though eh!! lol
Catching up on old stories and looking at photo's......wonderful.......
I love you all and thank you for that special day so much.....
xxx leigh
When is it time
When is is time to let go and accept I need more help. Is it giving in to accept the help being offered around me.
Foolishness unfortunately is stopping ease my pain and that is another lesson I am learning quickly.
I assumed if I pushmyself and especially my skinny arse and legs they would get stronger and give me more power to move around....boy was I wrong. I have been hobbling around with gritted teeth because of pain in my hips and legs on full dose paracetamol to no resolve.
My home help nurse poppped to see me today and has organized my Doc to come over later in the morning and change my meds to ease the pain....or get rid would be better.
xxx Leigh
Foolishness unfortunately is stopping ease my pain and that is another lesson I am learning quickly.
I assumed if I pushmyself and especially my skinny arse and legs they would get stronger and give me more power to move around....boy was I wrong. I have been hobbling around with gritted teeth because of pain in my hips and legs on full dose paracetamol to no resolve.
My home help nurse poppped to see me today and has organized my Doc to come over later in the morning and change my meds to ease the pain....or get rid would be better.
xxx Leigh
Monday 12 April 2010
Wheelchair
I took delivery of my new wheelchair Saturday which was a hard pill to chew.
Theo and Ellen still had it in the cellar from Marcels mum to be more mobile. At least it will get me more mobile as I can walk with it and take a seat when tired.
This past weekend John and I had lots of time together and family have all gone home and we have our home back.
The distraction of family and bondding was very special but as we all know it is great to get back to your own routine.
Today the 12th I had a really lazy day....checking a few mails and having mini naps. My legs are giving me gip at the moment and paracetomol is just not enough. The doctor will be here tomorrow for a home visit and I will ask for stronger meds. My legs are cramping up at night even with an electric blancket on my legs.
I have a big day ahead of me tomorrow with three ladies popping over to see me from the UK...I feel honoured. They are my old dear friends Pearl, Anita and Rosie. Pearl and Anita I used to fly with at BMI and I also flew with Alan, Rosie's brother and Rosie and I became good friends.
xxxleigh
Theo and Ellen still had it in the cellar from Marcels mum to be more mobile. At least it will get me more mobile as I can walk with it and take a seat when tired.
This past weekend John and I had lots of time together and family have all gone home and we have our home back.
The distraction of family and bondding was very special but as we all know it is great to get back to your own routine.
Today the 12th I had a really lazy day....checking a few mails and having mini naps. My legs are giving me gip at the moment and paracetomol is just not enough. The doctor will be here tomorrow for a home visit and I will ask for stronger meds. My legs are cramping up at night even with an electric blancket on my legs.
I have a big day ahead of me tomorrow with three ladies popping over to see me from the UK...I feel honoured. They are my old dear friends Pearl, Anita and Rosie. Pearl and Anita I used to fly with at BMI and I also flew with Alan, Rosie's brother and Rosie and I became good friends.
xxxleigh
Friday 9 April 2010
Family all home safe
Hello Blog,
An early start today with family going home and appointments at the doctor and hospital.
The alarm clock woke me at 06:45 and I pottered downstairs to put the kettle and the koffie machine on to get the family up and running.
The bacon came out of th ridge and the eggs were whipped to make a big omelate. So we had lovely bacon and egg buns to start the day.
My first trip was to the doctor to collect medicine with John and a pee pot to make a test on my urine as it feels strange and flows too well.......
On the way back we got stuck at the canal bridge for 15 minutes so we started to panic as we had to quickly nip home to say goodbye to my family and rush off to the next hospital appointmnet.
At 09:00 we got home with quick cuddles and kisses to say goodbye to family and sped off to the local hospital to meet up with my Oncologist.
We arrived 3 minutes late...so not too bad really....and within a few mins we were invited in.
I had met this Oncologist Dhr van Reizen 2 years ago when I had my chemo after the RC Radical Cystectomy. He is such a gentle man and very calming and wanted to hear what we expected from him.
Obviously firstly we wanted to know if he agreed with all the advise we had received thus far and he agreed. Very compassionate and had had experience with only one other patient with the same diagnosis in the last ten years. No effective treatment is available for this ravage of bladder cancer cells in the spinal fluid. Of course for other cancers types.....not for bladder cancer cells.
Yes it was downhearting and sad and I dropped into a dip.....I have done enough now.....questions have been asked and answered. Time to get the acceptance....if it ever comes.....I hope so....soon...I need more peace and less anxiety in my body as it is up and down and I get the shakes with worry.
I think my doctor will increase my calming meds next week.....I do it anyway myself when I feel the need.
My neo bladder is having a whale of a time being incontinent during the daytime at the moment....normally I have total control in the day....the moment I relax it just lets go and I have to chane pads regular to stay dry.
I am hoping it has something to do with an infection in my bladder which will be confirmed Mon/Tue next week and an antibiotica cure will sort that out.
After today's adventures I slept well this afternoon with a few cat naps and now have the energy to write a bit of the blog.
X-Factor in Holland the first live shows are just about to start so Leigh signing out.......
xxx Leigh
An early start today with family going home and appointments at the doctor and hospital.
The alarm clock woke me at 06:45 and I pottered downstairs to put the kettle and the koffie machine on to get the family up and running.
The bacon came out of th ridge and the eggs were whipped to make a big omelate. So we had lovely bacon and egg buns to start the day.
My first trip was to the doctor to collect medicine with John and a pee pot to make a test on my urine as it feels strange and flows too well.......
On the way back we got stuck at the canal bridge for 15 minutes so we started to panic as we had to quickly nip home to say goodbye to my family and rush off to the next hospital appointmnet.
At 09:00 we got home with quick cuddles and kisses to say goodbye to family and sped off to the local hospital to meet up with my Oncologist.
We arrived 3 minutes late...so not too bad really....and within a few mins we were invited in.
I had met this Oncologist Dhr van Reizen 2 years ago when I had my chemo after the RC Radical Cystectomy. He is such a gentle man and very calming and wanted to hear what we expected from him.
Obviously firstly we wanted to know if he agreed with all the advise we had received thus far and he agreed. Very compassionate and had had experience with only one other patient with the same diagnosis in the last ten years. No effective treatment is available for this ravage of bladder cancer cells in the spinal fluid. Of course for other cancers types.....not for bladder cancer cells.
Yes it was downhearting and sad and I dropped into a dip.....I have done enough now.....questions have been asked and answered. Time to get the acceptance....if it ever comes.....I hope so....soon...I need more peace and less anxiety in my body as it is up and down and I get the shakes with worry.
I think my doctor will increase my calming meds next week.....I do it anyway myself when I feel the need.
My neo bladder is having a whale of a time being incontinent during the daytime at the moment....normally I have total control in the day....the moment I relax it just lets go and I have to chane pads regular to stay dry.
I am hoping it has something to do with an infection in my bladder which will be confirmed Mon/Tue next week and an antibiotica cure will sort that out.
After today's adventures I slept well this afternoon with a few cat naps and now have the energy to write a bit of the blog.
X-Factor in Holland the first live shows are just about to start so Leigh signing out.......
xxx Leigh
Thursday 8 April 2010
Calls just in time zone please.....
I had a wheelchair on order to help me walk a little more and take a rest when needed. Basically push it along until I needed a pew.
My brother in law read my blog and called to say they still had a wheelchair from my mother inlaw.
Amazing how connections can be so helpful and bring out kindness....
So the wheelchair has been cancelled with home help...saves money too right....
My garden is looking tidy and ready for the growing season with all hands on deck the last few days....brillant.
Great to see the daffs, tulips and spring flowers popping out colours......
Sis,Mike and Mollie go back home to England tomorrow with PO Ferries and should be home tea time. It has been a joy having them here with Auntie Sha leaving earlier in the week Monday. Now back to work....enjoying the joys of Fish and chips soaked in vinegar and salt.
It has been a great feeling having them all around helping out and keeping me company....my house is a little cottage so it has been a bit crowdy....but plenty of places to have a rest in my room and get my mind at peace when needed.
John and I will have the weekend to our selves and the following week so great quality time together in a few days to bond and chat and be together.
I am finding it harder to reply to mails letters and emails recently...just dont have the energy sometimes. So I will be posting an email soon to tell everyone to read the blog for updates only and not to send anymore personal mails as it is just too much admin.
Calls please just between 15:00 and 17:00 otherwise my day is just find I am being disturbed by calls all day ....work work work and I am finding I need more and more naps.
This does not apply to family of course!!
If you find that you want to call in that time zone and it rings it could also mean I am taking another call and although i have call waiting i do not use it...i finish the call i am on not to be rude. So if you call and i do not answer....ask yourself is it important...yes,no....try another time day.
Thank you all for your help here......
xxx leigh
My brother in law read my blog and called to say they still had a wheelchair from my mother inlaw.
Amazing how connections can be so helpful and bring out kindness....
So the wheelchair has been cancelled with home help...saves money too right....
My garden is looking tidy and ready for the growing season with all hands on deck the last few days....brillant.
Great to see the daffs, tulips and spring flowers popping out colours......
Sis,Mike and Mollie go back home to England tomorrow with PO Ferries and should be home tea time. It has been a joy having them here with Auntie Sha leaving earlier in the week Monday. Now back to work....enjoying the joys of Fish and chips soaked in vinegar and salt.
It has been a great feeling having them all around helping out and keeping me company....my house is a little cottage so it has been a bit crowdy....but plenty of places to have a rest in my room and get my mind at peace when needed.
John and I will have the weekend to our selves and the following week so great quality time together in a few days to bond and chat and be together.
I am finding it harder to reply to mails letters and emails recently...just dont have the energy sometimes. So I will be posting an email soon to tell everyone to read the blog for updates only and not to send anymore personal mails as it is just too much admin.
Calls please just between 15:00 and 17:00 otherwise my day is just find I am being disturbed by calls all day ....work work work and I am finding I need more and more naps.
This does not apply to family of course!!
If you find that you want to call in that time zone and it rings it could also mean I am taking another call and although i have call waiting i do not use it...i finish the call i am on not to be rude. So if you call and i do not answer....ask yourself is it important...yes,no....try another time day.
Thank you all for your help here......
xxx leigh
Wednesday 7 April 2010
Home help
Jenti my home help carer came for a visit this morning to check my progress.
I have one home visit at the moment and one call a week to get an update.
Everthing is basically in place to roll when required but I can do most things myself at the moment together with my partner.
I have to walk more though because when I do have a speart my muscles are painful the next day. Have to motivate myself more each day to take longer walks. Paracetomol helps ease the pain though.
Have decided to order a weelchair so that I can be more mobile with John....even if I just use it to push at the beginning and take a pew when feeling too weak.
Just waiting to hear if I get a home helper to wash my windows, bathroom or kitchen once a week...should find out in the next few days.
Any extra help would be wonderful so that I have more quality time with John when he gets home from work.
xxxleigh
I have one home visit at the moment and one call a week to get an update.
Everthing is basically in place to roll when required but I can do most things myself at the moment together with my partner.
I have to walk more though because when I do have a speart my muscles are painful the next day. Have to motivate myself more each day to take longer walks. Paracetomol helps ease the pain though.
Have decided to order a weelchair so that I can be more mobile with John....even if I just use it to push at the beginning and take a pew when feeling too weak.
Just waiting to hear if I get a home helper to wash my windows, bathroom or kitchen once a week...should find out in the next few days.
Any extra help would be wonderful so that I have more quality time with John when he gets home from work.
xxxleigh
Tuesday 6 April 2010
Walkers Shortbread cookies
What a a lovely spring day today, the birds seem to be starting the morning calls earlier and earlier each morning.
The warmth of the sun are bringing all the winter hybernating insects out...with the bees and lady birds dashing around in the barmy spring warmth.
My family have been rallying around in the garden, cutting the grass and sweeping the paths.....sunshine can do wonders for everyone eh!!
House in the country has just finished and the great British menu is next on the TV so off to watch my cooking program....pigging out on shortbread cookies at the moment...very moorish....lol
xxxleigh
The warmth of the sun are bringing all the winter hybernating insects out...with the bees and lady birds dashing around in the barmy spring warmth.
My family have been rallying around in the garden, cutting the grass and sweeping the paths.....sunshine can do wonders for everyone eh!!
House in the country has just finished and the great British menu is next on the TV so off to watch my cooking program....pigging out on shortbread cookies at the moment...very moorish....lol
xxxleigh
Saturday 3 April 2010
Port
Just to let you know my port has settled down and it is free to the world to inject into.
It is located under my left shoulder bone and now feels like a small lump....guess it is still swollen....it is a little red and painful when one the cats decides to use me as a spring board lol.
Funny how they know just were to jump....
Kitty and Andy visited yesterday and fixed up a new computer for me to use downstairs which is wonderful. My stairs are getting harder and harder to climb...my own fault really...two weeks in hospital and my legs are very weak. Have to walk more to build up some strength.
What a special gift though along with all the others.....especially the fabulous chocolate easter eggs.
Theo and Ellen too and my family baring me with gifts and love.......it is hard to accept....but I will do my best to accept modestly of course Leigh being Leigh. It seems like Christmas....when i get visits...I appreciate you all so very much....thank you.
I feel lucky lucky lucky..........please no more gifts though...I just want your presence, love and bonding.......
xxxleigh
It is located under my left shoulder bone and now feels like a small lump....guess it is still swollen....it is a little red and painful when one the cats decides to use me as a spring board lol.
Funny how they know just were to jump....
Kitty and Andy visited yesterday and fixed up a new computer for me to use downstairs which is wonderful. My stairs are getting harder and harder to climb...my own fault really...two weeks in hospital and my legs are very weak. Have to walk more to build up some strength.
What a special gift though along with all the others.....especially the fabulous chocolate easter eggs.
Theo and Ellen too and my family baring me with gifts and love.......it is hard to accept....but I will do my best to accept modestly of course Leigh being Leigh. It seems like Christmas....when i get visits...I appreciate you all so very much....thank you.
I feel lucky lucky lucky..........please no more gifts though...I just want your presence, love and bonding.......
xxxleigh
Neo bladder playing games
Good morning,
My neo bladder has been keeping me awake at night the last few nights and sleep has been cat naps in the afternoons.....lol
Just a quick update to say I am still here alive and kicking and trying to enjoy every moment of life.
Yes of course I have worries and crazy thoughts in my head....all part of trying to accept the obvious.
Second opinions are no option for me for the extension to my life that they could bring. I have chosen for quality and connection with my family and friends.
The fight certainly goes on to survive as long as possible...so positive attitudes all the way.
My Oncologist has no real stats on how the evolution..progression of the disease will take. Roughly 1% of bladder cancer patients end up with mets in the spinal fluid. So no real sucess results for treatment that can be offered. The best was chemo injected directly into the spine but the results were two months extention at best.The pain,sickness and traveling would just not be worthit. My passing could be spontaneus, or spread over weeks rather than months.
So I now choose life....enjoying my time alone with my thoughts and with my partner and family and friends.
I feel at peace and have a calming presence that all will be well.
The summer time has started here in Hollland and all life has started to grow and buds and flowers are sprouting everywhere....wonderful.
It is Easter weekend and my little niece and Auntie and sister are here in Holland with me this Easter break and we are bonding in so many special ways.
I wish everyone a really special Easter weekend and love and peace to all.
Leigh xxx
My neo bladder has been keeping me awake at night the last few nights and sleep has been cat naps in the afternoons.....lol
Just a quick update to say I am still here alive and kicking and trying to enjoy every moment of life.
Yes of course I have worries and crazy thoughts in my head....all part of trying to accept the obvious.
Second opinions are no option for me for the extension to my life that they could bring. I have chosen for quality and connection with my family and friends.
The fight certainly goes on to survive as long as possible...so positive attitudes all the way.
My Oncologist has no real stats on how the evolution..progression of the disease will take. Roughly 1% of bladder cancer patients end up with mets in the spinal fluid. So no real sucess results for treatment that can be offered. The best was chemo injected directly into the spine but the results were two months extention at best.The pain,sickness and traveling would just not be worthit. My passing could be spontaneus, or spread over weeks rather than months.
So I now choose life....enjoying my time alone with my thoughts and with my partner and family and friends.
I feel at peace and have a calming presence that all will be well.
The summer time has started here in Hollland and all life has started to grow and buds and flowers are sprouting everywhere....wonderful.
It is Easter weekend and my little niece and Auntie and sister are here in Holland with me this Easter break and we are bonding in so many special ways.
I wish everyone a really special Easter weekend and love and peace to all.
Leigh xxx
Sunday 28 March 2010
Getting my house in order
Preparing to get my house in order this pass week has been a great strain on my partner and family and friends. (me too of course but kept that secret)
They have all rallied around to get things rolling for me.
Getting home care registered and set up when the time comes so that just a phone call is required. They will be available 24/7 when necessary which is a great relief.
The funeral directors have paid a visit and me being a total control freak at the momment have all that set up ready to role. Of course my family found it devastating to talk about as our European culture hides everything and anything to do with dying. Lots of tears and sadness...which in a way was a cleansing for us all. Designing my own passing announcement cards and thank you letters wws pretty weird but satisfying at the same time.
I guess I have just blocked the emotions .....should really be more sensitive to my family's emotions more....just got to get it organized though so that they have nothing to do later.
So desperately trying to make it a celebration of my life instead of a somber affair....how do you do that right when loved ones are taken away.....hmmmm
Finances have been a nightmare....writing letter after letter...insurances...pensions....changing names on documents...Getting letters on original documents from doctors to prove that I am now a terminal cancer patient etc....well I am pleased to announce it is all done and dusted....a week of help and support and now I can relax....so too can my family and close friends.....I know they are happy about that....no more pressure for them....well you know hat I mean..no added work from me...
One great thing came out of this last weeks trauma of planning is that most of them have now set up there own funeral insurances and packages........
Ok...I had my rambling head on....could not sleep....xanax calming tablet kicking in now....03:16 in the morning here in Holland...time to get some nods in noddy land.....big day in the morning.....setting up a second opinion ...
Love and peace to all...xxxleigh
They have all rallied around to get things rolling for me.
Getting home care registered and set up when the time comes so that just a phone call is required. They will be available 24/7 when necessary which is a great relief.
The funeral directors have paid a visit and me being a total control freak at the momment have all that set up ready to role. Of course my family found it devastating to talk about as our European culture hides everything and anything to do with dying. Lots of tears and sadness...which in a way was a cleansing for us all. Designing my own passing announcement cards and thank you letters wws pretty weird but satisfying at the same time.
I guess I have just blocked the emotions .....should really be more sensitive to my family's emotions more....just got to get it organized though so that they have nothing to do later.
So desperately trying to make it a celebration of my life instead of a somber affair....how do you do that right when loved ones are taken away.....hmmmm
Finances have been a nightmare....writing letter after letter...insurances...pensions....changing names on documents...Getting letters on original documents from doctors to prove that I am now a terminal cancer patient etc....well I am pleased to announce it is all done and dusted....a week of help and support and now I can relax....so too can my family and close friends.....I know they are happy about that....no more pressure for them....well you know hat I mean..no added work from me...
One great thing came out of this last weeks trauma of planning is that most of them have now set up there own funeral insurances and packages........
Ok...I had my rambling head on....could not sleep....xanax calming tablet kicking in now....03:16 in the morning here in Holland...time to get some nods in noddy land.....big day in the morning.....setting up a second opinion ...
Love and peace to all...xxxleigh
Metrotrexate
Metrotrexate seems to be a possibily that can be given orally, intravenously or injected directly into the spine. Seems to have a delaying effect on the cancer growth.
Seems that I am clutching at anything passing me by....but hey ....now I feel well enough and have energy to research a little. If I can get a few months or longer out of this with little side effects it really is worth it to me for the time with my family and friends.
I had my port placed in on Saturday and although it is still giving me a bit of gip when I move my arm or stretch it is ready and willling to go when needed.
I had it done under local injection and the procedure took just 30 mins....The initial pain of having the numbing injections under my left shoulder pain passes quickly and the procedure zoomed away.
Just had to have an xray after wards to check that no puncture had occured on the lung which I am sure I would have known about....but got the all clear. After a sandwich and cup of coffee I was sent home packing.
My home care is just to shower as normal and change the dressing each day for three days and then to air it out to the world.
I have no real pain ...just discomfort when in bed and rolling over to turn sides....
Paracetomol is more than enough to take off the edge....it feels much bettter already. Just feels like a small mobile inserted into my left chest.....please dont call me....not sure how to answer it yet...did not get instructions....lol
xxxleigh
Seems that I am clutching at anything passing me by....but hey ....now I feel well enough and have energy to research a little. If I can get a few months or longer out of this with little side effects it really is worth it to me for the time with my family and friends.
I had my port placed in on Saturday and although it is still giving me a bit of gip when I move my arm or stretch it is ready and willling to go when needed.
I had it done under local injection and the procedure took just 30 mins....The initial pain of having the numbing injections under my left shoulder pain passes quickly and the procedure zoomed away.
Just had to have an xray after wards to check that no puncture had occured on the lung which I am sure I would have known about....but got the all clear. After a sandwich and cup of coffee I was sent home packing.
My home care is just to shower as normal and change the dressing each day for three days and then to air it out to the world.
I have no real pain ...just discomfort when in bed and rolling over to turn sides....
Paracetomol is more than enough to take off the edge....it feels much bettter already. Just feels like a small mobile inserted into my left chest.....please dont call me....not sure how to answer it yet...did not get instructions....lol
xxxleigh
SPINAL FLUID METS
I am looking for options that can help with:
SPINAL FLUID METASTASES
If there are cancer cells in the spinal fluid and there is no brain tumor....(removed just before Christmas),treatment will usually consist of a total dose of 2400 cGy,Radiotheraphy (which I can no longer have as full dose given in Jan 2010.) [Intrathecal drug administration into the spinal fluid seems to be a possibility. An Ommaya reservoir or a ventricular access device may be used to delivery the drug into a ventricle. This is called intraventricular delivery. The drug then circulates from the ventricle throughout the spinal fluid.] chemotherapy. Just finding chemo's that can enter the protective membrane of the brain and fluid that have had some positive effect. And of course finding an Oncologist willling to do it.
xxx leigh
SPINAL FLUID METASTASES
If there are cancer cells in the spinal fluid and there is no brain tumor....(removed just before Christmas),treatment will usually consist of a total dose of 2400 cGy,Radiotheraphy (which I can no longer have as full dose given in Jan 2010.) [Intrathecal drug administration into the spinal fluid seems to be a possibility. An Ommaya reservoir or a ventricular access device may be used to delivery the drug into a ventricle. This is called intraventricular delivery. The drug then circulates from the ventricle throughout the spinal fluid.] chemotherapy. Just finding chemo's that can enter the protective membrane of the brain and fluid that have had some positive effect. And of course finding an Oncologist willling to do it.
xxx leigh
http://bladdercancersupport.org
Thank you everyone for your kind words of love and support...they truley mean the world to me through these trying times.
I am amazed at the family of friends we have at this site. Recently I have recieved many personal emails from members and guests from this forum. It is wonderful the team of love and support we have at this bladder cancer network.
I understood that we have members and guests that take more of a reading and listening approach to this site....but I am truely inspired by the love and support recently recieved by these wonderful angels enveloping us with positive vibes and support from a small distance. And although you choose not to post but gain your valuable inspiration like many of us here.....I thank you.
We are not alone in our struggles and I thank you wonderful people caring for us with your presence in this cyber world of bladder cancer support.
Love, peace xxx leigh
I am amazed at the family of friends we have at this site. Recently I have recieved many personal emails from members and guests from this forum. It is wonderful the team of love and support we have at this bladder cancer network.
I understood that we have members and guests that take more of a reading and listening approach to this site....but I am truely inspired by the love and support recently recieved by these wonderful angels enveloping us with positive vibes and support from a small distance. And although you choose not to post but gain your valuable inspiration like many of us here.....I thank you.
We are not alone in our struggles and I thank you wonderful people caring for us with your presence in this cyber world of bladder cancer support.
Love, peace xxx leigh
Wednesday 24 March 2010
Busy few days
John and I have had a really busy week so far sorting finances and organizing services for the funeral etc.
As I am sure you can imagine it has been a very trying few days. Luckily my Sister and Auntie came over for a few days to help us. So much to organize and could have not done all those things alone. Thank you so much guys....xxxxx
Monday morning we had the home help nurse, setting up everything for us for when the time comes, so that is now in place and we just need to give them a call. They will be available 24/7 when necessary.
Monday evening the funeral director paid a visit and now all is set up for the that day too.....weird evening though...choosing a coffin , flowers and type of service etc....It is now organized and another thing off my mind thankfully.
Yesterday I had an appointment with the local surgeon at my local hospital De Honte Terneuzen to have a porto cat installed in my chest on Friday afternoon. This will help the nurses in the future if I cannot hold down my medicine and they can just inject directly into the box sitting under my chest. It is usually used for admin of chemo and taking blood etc.
I have chosen to go for a local anaesthethic and the procedure is roughly 30 min and after a coule of hours I can go home.
Chat another time with more news when poss....
Oh so far my reasearch has uncovered that maybe a drug called Methotrexate could possibly help and slow down progression of the disease within the spinal fluid...
Anyone interested in doing reasearch please do any help appreciated......
xxxleigh
As I am sure you can imagine it has been a very trying few days. Luckily my Sister and Auntie came over for a few days to help us. So much to organize and could have not done all those things alone. Thank you so much guys....xxxxx
Monday morning we had the home help nurse, setting up everything for us for when the time comes, so that is now in place and we just need to give them a call. They will be available 24/7 when necessary.
Monday evening the funeral director paid a visit and now all is set up for the that day too.....weird evening though...choosing a coffin , flowers and type of service etc....It is now organized and another thing off my mind thankfully.
Yesterday I had an appointment with the local surgeon at my local hospital De Honte Terneuzen to have a porto cat installed in my chest on Friday afternoon. This will help the nurses in the future if I cannot hold down my medicine and they can just inject directly into the box sitting under my chest. It is usually used for admin of chemo and taking blood etc.
I have chosen to go for a local anaesthethic and the procedure is roughly 30 min and after a coule of hours I can go home.
Chat another time with more news when poss....
Oh so far my reasearch has uncovered that maybe a drug called Methotrexate could possibly help and slow down progression of the disease within the spinal fluid...
Anyone interested in doing reasearch please do any help appreciated......
xxxleigh
Update
Hello Everyone,
As some of you know already the last few weeks have been difficult with sickness for me. I have been in and out of the hospital with sickness and vomiting.
A few days ago I had a lumbar puncture and the results came through Friday just gone. The news was not what anyone would want to hear but hey it is my deal of the deck and I have to deal with it . Hopefully with all your love and support along the way.
My Oncologist has confirmed that they found bladder cancer cells in my brain fluid in my spine that circulate into the brain and lumbar area. This is a very rare condition and effects 1% of people.
What can they do? Well my Oncologist in Belgium has no options for me because the three options they have unfortunately have given no positive results on extension of life.
Option one:
Chemo...no positive results as cannot enter protective membrane in brain.
Option 2:
Radiotherapy, I have already had in January to no effect.
Option:3
Inject chemo directly into spine....no positive results for patients whom have had that option.
If the next two weeks go fine I may have months if not then it could be weeks before I die.
I am still full off energy and want to try for a second opinion to give myself the feeling I have done all I can to fight this to the end.
I know this will be a shock to many and nothing anyone can say can really help....I just have to find a place for it somehow myself.
Please do however keep your kind words of love and support coming I really appreciate them.
If you would like to be in touch, please send an email because it will be far better than getting lots of calls and text messages at home. John can print out the emails and I can read them. If I do have the energy I will reply...if I can and have the energy I will reply.
Could I ask you all to send me your home addresses so that when the end happens John can send a card to you.
For now I send you all my love and best wishes.....
Leigh Walker
Graafjansdijk b, 141
4554LC Westdorpe
Zeeland Holland
leigh@zeelandnet.nl
As some of you know already the last few weeks have been difficult with sickness for me. I have been in and out of the hospital with sickness and vomiting.
A few days ago I had a lumbar puncture and the results came through Friday just gone. The news was not what anyone would want to hear but hey it is my deal of the deck and I have to deal with it . Hopefully with all your love and support along the way.
My Oncologist has confirmed that they found bladder cancer cells in my brain fluid in my spine that circulate into the brain and lumbar area. This is a very rare condition and effects 1% of people.
What can they do? Well my Oncologist in Belgium has no options for me because the three options they have unfortunately have given no positive results on extension of life.
Option one:
Chemo...no positive results as cannot enter protective membrane in brain.
Option 2:
Radiotherapy, I have already had in January to no effect.
Option:3
Inject chemo directly into spine....no positive results for patients whom have had that option.
If the next two weeks go fine I may have months if not then it could be weeks before I die.
I am still full off energy and want to try for a second opinion to give myself the feeling I have done all I can to fight this to the end.
I know this will be a shock to many and nothing anyone can say can really help....I just have to find a place for it somehow myself.
Please do however keep your kind words of love and support coming I really appreciate them.
If you would like to be in touch, please send an email because it will be far better than getting lots of calls and text messages at home. John can print out the emails and I can read them. If I do have the energy I will reply...if I can and have the energy I will reply.
Could I ask you all to send me your home addresses so that when the end happens John can send a card to you.
For now I send you all my love and best wishes.....
Leigh Walker
Graafjansdijk b, 141
4554LC Westdorpe
Zeeland Holland
leigh@zeelandnet.nl
Saturday 20 February 2010
Eye Candy
Yesterday John drove me to Gent for my follow up with the Radiotherapy doctor. It has now been nearly a month since my treatment ended and everything seems to be going to plan.
Weaning off the steroids is the aim now and next week begins the tapering again….it will be ok this time!!
As the radiotherapy continues to work for up to three months I may be a baldy for some time…although I do feel bristles of hair growing back…..
So I have now been handed over to the Oncology department in the hands of Prof, Rottey my specialist in Urinary and Head and Neck cancers so I am in really great hands.
My next hospital trip will be in early March for a CT scan of my thorax and abdominal area and the results of these tests a few days later. This of course is to check that the original bladder cancer has not taken up home anywhere else.
These appointments are getting harder and harder as basically I am waiting for those words Leigh don’t worry the scans are clear. The other option is not an option and will only mean we will do our best for you to extend and delay the inevitable as much as possible.
Psychologically it is a strain and I do have moments that I am scared and those moments are occurring more often. Being at home alone all day has a part to play in my mental health at the moment and I crave other sights and sounds.
The treatment path has been difficult however I am feeling stronger these days so feel motivated from that to strum up positive thoughts and energy.
Getting away with John and friends next week will be wonderful and have been so looking forward to it for ages. I have been scared that I may spoil proceedings with my health and have to back out….but no I will be ok….I will have enough energy…and I will have a wonderful time enjoying the warm sunshine sitting in the shade or swinging in a hammock sipping long cool drinks and checking out the eye candy.
Weaning off the steroids is the aim now and next week begins the tapering again….it will be ok this time!!
As the radiotherapy continues to work for up to three months I may be a baldy for some time…although I do feel bristles of hair growing back…..
So I have now been handed over to the Oncology department in the hands of Prof, Rottey my specialist in Urinary and Head and Neck cancers so I am in really great hands.
My next hospital trip will be in early March for a CT scan of my thorax and abdominal area and the results of these tests a few days later. This of course is to check that the original bladder cancer has not taken up home anywhere else.
These appointments are getting harder and harder as basically I am waiting for those words Leigh don’t worry the scans are clear. The other option is not an option and will only mean we will do our best for you to extend and delay the inevitable as much as possible.
Psychologically it is a strain and I do have moments that I am scared and those moments are occurring more often. Being at home alone all day has a part to play in my mental health at the moment and I crave other sights and sounds.
The treatment path has been difficult however I am feeling stronger these days so feel motivated from that to strum up positive thoughts and energy.
Getting away with John and friends next week will be wonderful and have been so looking forward to it for ages. I have been scared that I may spoil proceedings with my health and have to back out….but no I will be ok….I will have enough energy…and I will have a wonderful time enjoying the warm sunshine sitting in the shade or swinging in a hammock sipping long cool drinks and checking out the eye candy.
Wednesday 17 February 2010
Shrove Tuesday
Time to hit the indoor cycle today to shed off the calories from Shrove Tuesday!!
I made some lovely jam and pure chocolate filled pancakes for desert last night and they were delicious.
It has been some time that I have flipped some pancakes and everyone of them turned out perfect…I have not lost my touch.
The heating man paid a visit also yesterday for a maintenance check-up, the pressure bar was nearly touching 0 and the boiler has been gurgling and banging for a few days. After a clean out with a vacuum cleaner and a good drink of water it sprung into action and warmed up the house….so now I am warm and cosy again…
Winter is winter this year and night times are well under 0, the cats just have no intention of going out to play. They cry to be let out…I open the door…they take once sniff of the cold air and come running back in. They are all very happy the radiators are up and running once more.
Ok time to do some chores…poop scooping …how lovely!!
I made some lovely jam and pure chocolate filled pancakes for desert last night and they were delicious.
It has been some time that I have flipped some pancakes and everyone of them turned out perfect…I have not lost my touch.
The heating man paid a visit also yesterday for a maintenance check-up, the pressure bar was nearly touching 0 and the boiler has been gurgling and banging for a few days. After a clean out with a vacuum cleaner and a good drink of water it sprung into action and warmed up the house….so now I am warm and cosy again…
Winter is winter this year and night times are well under 0, the cats just have no intention of going out to play. They cry to be let out…I open the door…they take once sniff of the cold air and come running back in. They are all very happy the radiators are up and running once more.
Ok time to do some chores…poop scooping …how lovely!!
Tuesday 16 February 2010
Hanging south
Weaning off the steroids has not gone to plan and a week of hobbling around and constant dizzy spells have forced me to give in and step up the dosage once more.
I reduced the level to 20 mg and thought if I just bite my way through my body would have adapted. Unfortunately this has not been the case and I am back to 40 mg a day.
My walking has improved and my brain feels calm once more…the feeling of it rolling around in my head at any slight movement was not a pleasant experience.
I did get warned by the Radiologist that this may happen and a step back maybe necessary…obviously the therapy is still active in my brain creating swelling.
Of course this has pissed me off a great deal and the puffy face and eyes are here to stay a little while longer.
The steroids really are my stabilizers and allow me to function and I could not walk with ought them.
I have been drenched in pessimism for my future this past week and it was no great place to be. Trying to find the bright side and rekindle positive thoughts has not come easy to me recently.
On top of this I have had a few episodes of high sugar levels and have now been given an insulin pen for when the levels are above 12. My doctor has warned me that in 1% of patients this can become permanent…whoopee, another ailment to add to the list.
Friday I have my Radiology appointment and will find out the deal with the steroids…if and when I can start to wean off again.
I am going to cross over to my normally optimistic self if only to boost my psychological well-being.
So as you can read I have had a blue week in the doldrums although I am heading to the middle east for some winter sun and relaxation next week. This will be a very well desrved break for John and I ..especially John as he needs a good rest. With lots of warm sunshine and snorkelling, searching for Nemo amongst the coral reafs.
I will be layed out on a sun bed or hammock sipping a cocktail or two and taking a dip in the pool each day to try to tighten out my flabby body….amazing what 4 months not going to the gym can do….everything and I mean everything is hanging south…
So my total sunblock for my head and neck is already packed…and I am counting the days to take off……
I reduced the level to 20 mg and thought if I just bite my way through my body would have adapted. Unfortunately this has not been the case and I am back to 40 mg a day.
My walking has improved and my brain feels calm once more…the feeling of it rolling around in my head at any slight movement was not a pleasant experience.
I did get warned by the Radiologist that this may happen and a step back maybe necessary…obviously the therapy is still active in my brain creating swelling.
Of course this has pissed me off a great deal and the puffy face and eyes are here to stay a little while longer.
The steroids really are my stabilizers and allow me to function and I could not walk with ought them.
I have been drenched in pessimism for my future this past week and it was no great place to be. Trying to find the bright side and rekindle positive thoughts has not come easy to me recently.
On top of this I have had a few episodes of high sugar levels and have now been given an insulin pen for when the levels are above 12. My doctor has warned me that in 1% of patients this can become permanent…whoopee, another ailment to add to the list.
Friday I have my Radiology appointment and will find out the deal with the steroids…if and when I can start to wean off again.
I am going to cross over to my normally optimistic self if only to boost my psychological well-being.
So as you can read I have had a blue week in the doldrums although I am heading to the middle east for some winter sun and relaxation next week. This will be a very well desrved break for John and I ..especially John as he needs a good rest. With lots of warm sunshine and snorkelling, searching for Nemo amongst the coral reafs.
I will be layed out on a sun bed or hammock sipping a cocktail or two and taking a dip in the pool each day to try to tighten out my flabby body….amazing what 4 months not going to the gym can do….everything and I mean everything is hanging south…
So my total sunblock for my head and neck is already packed…and I am counting the days to take off……
Monday 8 February 2010
Trying to run before I can walk
Since my last appointment with my Neurologist my vision and coordination have put me off from typing.
My vision becomes double after around ten minutes and a small email or message takes me that amount of time. My fingers hit the wrong keys and I am constantly correcting mistakes…
Walking is also becoming a problem and I find I have to grab the nearest support for balance.
The weaning off of the steroids is in full flow now and I am down from 64mg Medrol to 20mg and boy do I feel the difference. The steroids have really helped me function over the last few months.
I really hope that the fluid in my brain absorbs quickly and all balance and coordination return to normal ASAP.
My Neurologist tried to explain to me that I had to learn to walk before I could run again…Leigh being Leigh thought that everything would just return to normal far sooner and that I could reintegrate back to work.
The radiotherapy continues to work even though the treatment has finished and will continue for the next few months. Luckily for me the only visible signs of the treatment were hair loss and dry skin on my scalp and for head. Physically I have to have rest between exertion and a few naps now and again.
The advice I have to follow is to remain home for a further three months until my next MRI scan. In that time I am banned from driving because of a risk of epilepsy due to the fluid in pockets of the brain.
I can however get back to the gym which I am happy about and can have gentle walks on the tread mill or ride a bike and lift the lightest weights. Build up my strength gradually and to listen to my body and not push things.
Reading just is not an option at the moment and makes me feel sick after a while so I am becoming hooked to daytime soaps…..
Have to try desperately not to fall into a dip though and stimulate myself in other ways….
My vision becomes double after around ten minutes and a small email or message takes me that amount of time. My fingers hit the wrong keys and I am constantly correcting mistakes…
Walking is also becoming a problem and I find I have to grab the nearest support for balance.
The weaning off of the steroids is in full flow now and I am down from 64mg Medrol to 20mg and boy do I feel the difference. The steroids have really helped me function over the last few months.
I really hope that the fluid in my brain absorbs quickly and all balance and coordination return to normal ASAP.
My Neurologist tried to explain to me that I had to learn to walk before I could run again…Leigh being Leigh thought that everything would just return to normal far sooner and that I could reintegrate back to work.
The radiotherapy continues to work even though the treatment has finished and will continue for the next few months. Luckily for me the only visible signs of the treatment were hair loss and dry skin on my scalp and for head. Physically I have to have rest between exertion and a few naps now and again.
The advice I have to follow is to remain home for a further three months until my next MRI scan. In that time I am banned from driving because of a risk of epilepsy due to the fluid in pockets of the brain.
I can however get back to the gym which I am happy about and can have gentle walks on the tread mill or ride a bike and lift the lightest weights. Build up my strength gradually and to listen to my body and not push things.
Reading just is not an option at the moment and makes me feel sick after a while so I am becoming hooked to daytime soaps…..
Have to try desperately not to fall into a dip though and stimulate myself in other ways….
Thursday 4 February 2010
MRI scans before and after
Top image is the after op and the image below before op.
The removal of the tumour has created a space which is filled with fluid and will over 6-12 mths absorb naturally in the body.
At the back of the neck at the entry point I also have a fluid build up....this is due to the removal of a piece of scull and the healing process from gaining access to the Cerebellum which they had to split.
The removal of the tumour has created a space which is filled with fluid and will over 6-12 mths absorb naturally in the body.
At the back of the neck at the entry point I also have a fluid build up....this is due to the removal of a piece of scull and the healing process from gaining access to the Cerebellum which they had to split.
Wednesday 3 February 2010
Great News!!
Great news!!
My MRI scan was all clear and the operation a success.
More to come later…..now time to celebrate and crack open a bottle!!
xxxleigh
My MRI scan was all clear and the operation a success.
More to come later…..now time to celebrate and crack open a bottle!!
xxxleigh
Sunday 31 January 2010
Boo Boo
I made boo boo with my appointment for the MRI which is a day later than the appointment I had in my head.
So I will be heading off to Gent Wednesday the 03-02 a day later and the MRI is at 10:15 and the results at 13:30.
So I will be heading off to Gent Wednesday the 03-02 a day later and the MRI is at 10:15 and the results at 13:30.
Wednesday 27 January 2010
Puffiness!!
The steroids that are being prescribed during my recovery that help reduce the swelling and headaches have given me temporary diabetes.
During my hospital stay for the operation I was given insulin injections when the levels were too high.
Now I have to check my blood sugar four times daily and call the diabetic nurse at the end of each day and report the levels.
If they get too high, injections will be supplied to stabilize……
Apparently this is a common occurrence when on such steroids….. (Prednisone)
This normally corrects itself when the steroids are reduced in dosage or when weaned off. The weaning process started today and will last three weeks so here’s to getting my slender tones back.
I can tell you I will be very happy to say goodbye to all the fluid filled puffiness!!
During my hospital stay for the operation I was given insulin injections when the levels were too high.
Now I have to check my blood sugar four times daily and call the diabetic nurse at the end of each day and report the levels.
If they get too high, injections will be supplied to stabilize……
Apparently this is a common occurrence when on such steroids….. (Prednisone)
This normally corrects itself when the steroids are reduced in dosage or when weaned off. The weaning process started today and will last three weeks so here’s to getting my slender tones back.
I can tell you I will be very happy to say goodbye to all the fluid filled puffiness!!
Monday 25 January 2010
Back, crack and sack!!
I was faced with the reality of my cancer diagnosis head on that I will admit made me shed a few tears.
The general fatigue and headaches I have associated with the radiotherapy. Friday night however I was watching TV in bed when I felt something fall on my cheeks and just brushed it off. It happened again so I turned on the bedside light and ran my fingers threw my hair and yes it came out in bundles.
I knew it was a possibility that this could happen although I kind of kidded myself that it would not as it did not with the chemotherapy two years ago.
John was snoring next to me so I woke him up to share my drama and emotions and I told him my hair has started to fall out. With his blood shot eyes and dreamy stare he asked me “how you know it is falling out.” So I ran my fingers through once more and I got an OH I SEE…..
I wiped away my tears and we rolled over and cuddled up and fell asleep…..with my last thoughts thinking I was going to wake with spitting out hair balls like the cats and with mohair covered cheeks!!
My eyes opened wide to the new day when the alarm sent out the call and to my surprise I had no hair covered pillow and had no feeling to throw up any balls of hair thankfully.
Saturday morning was spent in a chair covered in a bath sheet with John plugging in the shears for a number one buzz cut. I was surprised how gentle he was taking care running the shears over my scar and although we had silence between us something special happened spiritually.
I browsed down to the floor and could see John had piled my hair neatly into a tidy heap and my first thoughts were… oh shit I am going to be bald as a coot for my holiday in February!!
My hair comes out easily if I pull it and it seems to slowly thin each time I wash it in the shower. At least a number one hair cut easily washes away down the plug hole.
Looking in the mirror I am now faced head on with the ravages of treatment and this god awful disease. However I quickly pulled myself together and managed to persuade myself to think positively. Move along the pain and anger of the emotions as they are not worth it and I certainly do not want to hang around those feelings.
It will grow back and it is winter so I wear hats at the moment anyway so what’s the problem.
It is a kind of a shame I could not be more selective and choose the place of hair loss…would that not be great….I could think of a few other places it would have been welcome….a David Beckham would have been good….back, crack and sack!!! lol
The general fatigue and headaches I have associated with the radiotherapy. Friday night however I was watching TV in bed when I felt something fall on my cheeks and just brushed it off. It happened again so I turned on the bedside light and ran my fingers threw my hair and yes it came out in bundles.
I knew it was a possibility that this could happen although I kind of kidded myself that it would not as it did not with the chemotherapy two years ago.
John was snoring next to me so I woke him up to share my drama and emotions and I told him my hair has started to fall out. With his blood shot eyes and dreamy stare he asked me “how you know it is falling out.” So I ran my fingers through once more and I got an OH I SEE…..
I wiped away my tears and we rolled over and cuddled up and fell asleep…..with my last thoughts thinking I was going to wake with spitting out hair balls like the cats and with mohair covered cheeks!!
My eyes opened wide to the new day when the alarm sent out the call and to my surprise I had no hair covered pillow and had no feeling to throw up any balls of hair thankfully.
Saturday morning was spent in a chair covered in a bath sheet with John plugging in the shears for a number one buzz cut. I was surprised how gentle he was taking care running the shears over my scar and although we had silence between us something special happened spiritually.
I browsed down to the floor and could see John had piled my hair neatly into a tidy heap and my first thoughts were… oh shit I am going to be bald as a coot for my holiday in February!!
My hair comes out easily if I pull it and it seems to slowly thin each time I wash it in the shower. At least a number one hair cut easily washes away down the plug hole.
Looking in the mirror I am now faced head on with the ravages of treatment and this god awful disease. However I quickly pulled myself together and managed to persuade myself to think positively. Move along the pain and anger of the emotions as they are not worth it and I certainly do not want to hang around those feelings.
It will grow back and it is winter so I wear hats at the moment anyway so what’s the problem.
It is a kind of a shame I could not be more selective and choose the place of hair loss…would that not be great….I could think of a few other places it would have been welcome….a David Beckham would have been good….back, crack and sack!!! lol
Thursday 21 January 2010
What are my chances of long term survival
I found this interesting article about brain mets which has given me a bit more hope…because I fall under the single tumour that was operable…fingers crossed of course and with all your energy streaming my way!!
What Are My Chances of "Cure" with a metastasis to the brain?
Having a brain metastasis is a serious complication, but being in expert hands can increase your chances for survival.
Yes, many people will die from this progression of tumour. But it is also fair to say that people with lower grade tumours and those with fewer or solitary mets and those tumours can be completely removed, will usually live longer and have better quality of life.
I have patients alive five years later who had metastases.
There are nine important elements in predicting a successful result:
1. location and number of tumours
2. grade and type of tumour,
3. whether there are tumours in other areas of the body
4. your age
5. if the tumour developed while on or off chemotherapy
6. Amount of the tumour that can be removed by surgery (skill of the neurosurgeon).
7. The response of the tumour to the new therapy
8. Other medical conditions or complications
9. Your functional state before and after surgery.
Remember, no matter how severe the situation, no physician or anyone else can predict for the individual what will happen with treatment. We are accurate in predicting for populations of patients but never for the individual.
What Are My Chances of "Cure" with a metastasis to the brain?
Having a brain metastasis is a serious complication, but being in expert hands can increase your chances for survival.
Yes, many people will die from this progression of tumour. But it is also fair to say that people with lower grade tumours and those with fewer or solitary mets and those tumours can be completely removed, will usually live longer and have better quality of life.
I have patients alive five years later who had metastases.
There are nine important elements in predicting a successful result:
1. location and number of tumours
2. grade and type of tumour,
3. whether there are tumours in other areas of the body
4. your age
5. if the tumour developed while on or off chemotherapy
6. Amount of the tumour that can be removed by surgery (skill of the neurosurgeon).
7. The response of the tumour to the new therapy
8. Other medical conditions or complications
9. Your functional state before and after surgery.
Remember, no matter how severe the situation, no physician or anyone else can predict for the individual what will happen with treatment. We are accurate in predicting for populations of patients but never for the individual.
Tuesday 19 January 2010
Satsuma’s or Clementine’s
The head pressure and headaches are under control thankfully and the tiredness is just fine with lots of cat naps.
Two more sessions to go and I am done with this step of the treatment and can finally recover and build back my energy and stamina.
Holding off on anything physical has been a great strain although I have been good and reframed. I am so looking forward to getting the all clear from Neurology to start building up activities.
The lack of exercise has created chicken legs and I cannot be having them as a permanent feature. My muscles have just wasted away and lost all tone but I can soon whip them back into shape.
Presently I am a good advert for Satsuma’s or Clementine’s as my face and neck are a lovely red, orange colour from the treatment. A bit of a sunburn effect going on…just feels like sunburn.
The operation site on the back of my head and neck was shaved prior to surgery and my neck part is not growing back yet….The other bits are stubbly which is a good sign…I think the treatment is having an effect on the hair growing.
I have lost 7 kilo’s in weight although when I look in the mirror it looks like I have piled on 7 kilo’s. The steroids have a nasty effect of holding onto fluid which hangs around my neck and face….lovely not…. looking forward to getting off those crappy tablets, ASAP.
So the next step will be to finish the last two zaps of radiotherapy and then I head off to Neurology on the 02-02-10. I have an MRI planned late morning and a visit with the Neurologist a little later in the afternoon for the results.
These scans and results are the worse part of the waiting game although I should be thankful that the results will be the same day as usually I have a few days waiting time in between.
Two and a half years ago when they said I had stage 4 bladder cancer and I did a search on the web…the results were very negative on outlook. I can only say that I have been so lucky to have great support on my side to beat the odds of 15% that were given to me.
The statistics are pointers only and outcome certainly depends on being your own health advocate and getting second opinions for the best treatment.
I am so happy I requested a second opinion in the very beginning as I believe I would not be here today with ought the more radical surgical option I chose to follow initially.
Each time the disease has gone metastic I have had incredible luck that it was operable and treatable….long may this be the case.
This meeting on the 02-02-10 with Neurology of course will be very important in deciding which path my future will follow.
I often get asked that I remain so calm and positive during these drama’s….to be honest I never really had a choice. To live and fight or to curl up and wither away…and the latter has never been an option for me.
Having a wonderful support network of friends and family have guided me during my moments that I needed lifting…and I thank you all so very much.
Two more sessions to go and I am done with this step of the treatment and can finally recover and build back my energy and stamina.
Holding off on anything physical has been a great strain although I have been good and reframed. I am so looking forward to getting the all clear from Neurology to start building up activities.
The lack of exercise has created chicken legs and I cannot be having them as a permanent feature. My muscles have just wasted away and lost all tone but I can soon whip them back into shape.
Presently I am a good advert for Satsuma’s or Clementine’s as my face and neck are a lovely red, orange colour from the treatment. A bit of a sunburn effect going on…just feels like sunburn.
The operation site on the back of my head and neck was shaved prior to surgery and my neck part is not growing back yet….The other bits are stubbly which is a good sign…I think the treatment is having an effect on the hair growing.
I have lost 7 kilo’s in weight although when I look in the mirror it looks like I have piled on 7 kilo’s. The steroids have a nasty effect of holding onto fluid which hangs around my neck and face….lovely not…. looking forward to getting off those crappy tablets, ASAP.
So the next step will be to finish the last two zaps of radiotherapy and then I head off to Neurology on the 02-02-10. I have an MRI planned late morning and a visit with the Neurologist a little later in the afternoon for the results.
These scans and results are the worse part of the waiting game although I should be thankful that the results will be the same day as usually I have a few days waiting time in between.
Two and a half years ago when they said I had stage 4 bladder cancer and I did a search on the web…the results were very negative on outlook. I can only say that I have been so lucky to have great support on my side to beat the odds of 15% that were given to me.
The statistics are pointers only and outcome certainly depends on being your own health advocate and getting second opinions for the best treatment.
I am so happy I requested a second opinion in the very beginning as I believe I would not be here today with ought the more radical surgical option I chose to follow initially.
Each time the disease has gone metastic I have had incredible luck that it was operable and treatable….long may this be the case.
This meeting on the 02-02-10 with Neurology of course will be very important in deciding which path my future will follow.
I often get asked that I remain so calm and positive during these drama’s….to be honest I never really had a choice. To live and fight or to curl up and wither away…and the latter has never been an option for me.
Having a wonderful support network of friends and family have guided me during my moments that I needed lifting…and I thank you all so very much.
Thursday 14 January 2010
Five more to go!!
It has been a rough week and I am now feeling a little better and getting back to functioning instead of sleeping.
My first treatment last Friday slapped me left to right to my surprise, with incredible headaches and sickness.
I had a little relief using painkillers but paracetamol and ibuprofen just did not do it for me.
The Monday was a testing time as I was throwing up every opportunity and the assistant at the hospital made an appointment with the radiotherapist doctor.
She prescribed steroids for me and said that the treatment can bring back fluid to the brain causing my symptoms.
That afternoon after I took my first dose I had instant relief from the headaches and sickness.
Each day I have seen an improvement and I am more awake than asleep thankfully.
Just keeping it short as my vision is not optimal and will update more when my energy returns….
5 more treatments to go….Tomorrow - Friday, Monday-Wednesday- Thursday off- and finishing on Friday next week!!
My first treatment last Friday slapped me left to right to my surprise, with incredible headaches and sickness.
I had a little relief using painkillers but paracetamol and ibuprofen just did not do it for me.
The Monday was a testing time as I was throwing up every opportunity and the assistant at the hospital made an appointment with the radiotherapist doctor.
She prescribed steroids for me and said that the treatment can bring back fluid to the brain causing my symptoms.
That afternoon after I took my first dose I had instant relief from the headaches and sickness.
Each day I have seen an improvement and I am more awake than asleep thankfully.
Just keeping it short as my vision is not optimal and will update more when my energy returns….
5 more treatments to go….Tomorrow - Friday, Monday-Wednesday- Thursday off- and finishing on Friday next week!!
Thursday 7 January 2010
Symptoms
I guess I should have started part two of my blog with this addition....I will chalk that one up to brain damage :-)
During the summer of 2009 the first signs and symptoms appeared.
I was under more stress than usual at work because it was the time of year colleagues were having summer holidays. I put down the light headaches and slight balance problems to overwork and extra stresses at work.
Later on in the autumn I had feelings of being pulled to the ground which was a weird sensation. I assumed they were all work stress related and hoped they would ease once my hours returned to normal.
The headaches only increased along with my balance and coordination issues. My energy levels and motivation alarmed me and finally I called my doctor for an appointment.
My blood was checked with no anomalies and after a series of neurology tests which I passed I was diagnosed with stress in my neck muscles and possible inner ear issues causing balance problems.
My doctor sent me to physiotherapy and after each session my symptoms increased and after three sessions I returned to my doctor.
Once again neurology tests were performed and no severe issues were noted except for my awkward walk. During this appointment my doctor called my Oncologist in Gent for advice and a CT scan was planned the following week.
The initial results of the CT scan were clear although a few days later I received a call from my Oncologist saying that the CT scan results had been checked by a second radiologist and damage was found in the Cerebellum.
An MRI scan was arranged the following day as this would give a more detailed view of the situation.
After a few days of nail biting my Oncologist confirmed that a 2cm mass had been found in the Cerebellum and an appointment was set up with Neurology.
I was planning on jetting off to Lanzarote a few days later and this unfortunately had to be cancelled on advice from Neurology as flying could be detrimental to my health.
As my neurology appointment was planned a week later I made great use of my week off from work to visit family back in the UK.
This trip did not turn out the way I had planned and after severe headaches I ended up being hospitalized for a night in the Hull Royal Infirmary.
An MRI revealed fluid on the brain and steroids were prescribed to reduce the swelling and control my symptoms.
Neurology wanted to remove the tumour and after a few discussions they understood my wishes to follow my treatment plan set up in Belgium.
I had to sign myself out of the hospital as they would not accept any responsibility for anything going wrong on my trip back home.
So my visit home was abruptly shortened and John and I returned back to Holland via Calais.
The neurology appointment confirmed all the details of the operation which was to be performed on the 16th of Dec 2009.
During the summer of 2009 the first signs and symptoms appeared.
I was under more stress than usual at work because it was the time of year colleagues were having summer holidays. I put down the light headaches and slight balance problems to overwork and extra stresses at work.
Later on in the autumn I had feelings of being pulled to the ground which was a weird sensation. I assumed they were all work stress related and hoped they would ease once my hours returned to normal.
The headaches only increased along with my balance and coordination issues. My energy levels and motivation alarmed me and finally I called my doctor for an appointment.
My blood was checked with no anomalies and after a series of neurology tests which I passed I was diagnosed with stress in my neck muscles and possible inner ear issues causing balance problems.
My doctor sent me to physiotherapy and after each session my symptoms increased and after three sessions I returned to my doctor.
Once again neurology tests were performed and no severe issues were noted except for my awkward walk. During this appointment my doctor called my Oncologist in Gent for advice and a CT scan was planned the following week.
The initial results of the CT scan were clear although a few days later I received a call from my Oncologist saying that the CT scan results had been checked by a second radiologist and damage was found in the Cerebellum.
An MRI scan was arranged the following day as this would give a more detailed view of the situation.
After a few days of nail biting my Oncologist confirmed that a 2cm mass had been found in the Cerebellum and an appointment was set up with Neurology.
I was planning on jetting off to Lanzarote a few days later and this unfortunately had to be cancelled on advice from Neurology as flying could be detrimental to my health.
As my neurology appointment was planned a week later I made great use of my week off from work to visit family back in the UK.
This trip did not turn out the way I had planned and after severe headaches I ended up being hospitalized for a night in the Hull Royal Infirmary.
An MRI revealed fluid on the brain and steroids were prescribed to reduce the swelling and control my symptoms.
Neurology wanted to remove the tumour and after a few discussions they understood my wishes to follow my treatment plan set up in Belgium.
I had to sign myself out of the hospital as they would not accept any responsibility for anything going wrong on my trip back home.
So my visit home was abruptly shortened and John and I returned back to Holland via Calais.
The neurology appointment confirmed all the details of the operation which was to be performed on the 16th of Dec 2009.
Wednesday 6 January 2010
New drug of choice
The stiffness in my neck has worsened recently and paracetamol does not take the edge off anymore. It is difficult to turn my head left and right and to touch my chin to chest and I often have a sort stabbing pain in my neck.
I called the reception from the neurology department and my surgeon called me back to reassure me.
I was immediately calmed as he had such a gentle calming voice and said that I should only be concerned and get in touch with my doctor if I had a fever, nausea or severe headaches.
He explained that they had to split the cerebellum in two to access the tumour and that needs time to heal. The removal of the piece of scull to access the cerebellum which was glued back in place would also be the reason I am having a stiff neck.
This morning I replaced the paracetamol for ibuprofen and have much more pain relief and this is now my new drug of choice!!
The big freeze continues and the gritters are out in force today sprinkling the salt and I feel like the lucky one, wrapped up warm inside in my pyjamas and fleece dressing gown snuggling up with my cats.
I called the reception from the neurology department and my surgeon called me back to reassure me.
I was immediately calmed as he had such a gentle calming voice and said that I should only be concerned and get in touch with my doctor if I had a fever, nausea or severe headaches.
He explained that they had to split the cerebellum in two to access the tumour and that needs time to heal. The removal of the piece of scull to access the cerebellum which was glued back in place would also be the reason I am having a stiff neck.
This morning I replaced the paracetamol for ibuprofen and have much more pain relief and this is now my new drug of choice!!
The big freeze continues and the gritters are out in force today sprinkling the salt and I feel like the lucky one, wrapped up warm inside in my pyjamas and fleece dressing gown snuggling up with my cats.
Tuesday 5 January 2010
Metastasis to Cerebellum
My stage IV bladder cancer now continues its journey with a metastasis to the Cerebellum which controls balance and coordination.
It has been a whirlwind of drama the last month although I am really grateful that the neurologist was able to operate and remove the tumour.
Getting home for Christmas after the operation meant a lot to me and it was a very special time.
During the early hours of Boxing Day morning John had to take me to the local hospital in Terneuzen because of severe pain in my legs. I had a pain killing injection which relieved the pain and then we returned home.
Exactly the same thing happened the following evening, as soon as I went to bed the pain began to overwhelm me and once more we returned to the hospital for another injection. The doctors were unable to explain the pain although assured me it had no connection to the recent brain surgery.
The following day I visited my own doctor and restless leg syndrome was diagnosed and medication prescribed. Luckily this syndrome disappeared as quickly as it came.
Yesterday’s appointment at radiology to make the mask was a swift procedure. I just had to lie down on a bench and a warm plastic sheet was placed over my face and neck.
Two assistants moulded the sheet around my face until it cooled which literally took a few minutes. I had a breathing hole for my mouth and I was told to remain still while they did a simulation.
They left the room and I could hear the machine making noises and I can only assume it was taking measurements. After five minutes they returned to the room and started marking areas on the mask. The mask was then removed and I was able to get up and go home.
My coordination and walking has improved dramatically although my neck remains stiff and headaches constant. Paracetamol takes the edge off and I have sleeping tablets at hand if necessary.
The support I have had from family, friends and colleagues has been wonderful and I appreciate that very much.
Friday will be my first radiotherapy treatment and before I know it the two weeks treatment will be over.
Happy New Year!!
Leigh
It has been a whirlwind of drama the last month although I am really grateful that the neurologist was able to operate and remove the tumour.
Getting home for Christmas after the operation meant a lot to me and it was a very special time.
During the early hours of Boxing Day morning John had to take me to the local hospital in Terneuzen because of severe pain in my legs. I had a pain killing injection which relieved the pain and then we returned home.
Exactly the same thing happened the following evening, as soon as I went to bed the pain began to overwhelm me and once more we returned to the hospital for another injection. The doctors were unable to explain the pain although assured me it had no connection to the recent brain surgery.
The following day I visited my own doctor and restless leg syndrome was diagnosed and medication prescribed. Luckily this syndrome disappeared as quickly as it came.
Yesterday’s appointment at radiology to make the mask was a swift procedure. I just had to lie down on a bench and a warm plastic sheet was placed over my face and neck.
Two assistants moulded the sheet around my face until it cooled which literally took a few minutes. I had a breathing hole for my mouth and I was told to remain still while they did a simulation.
They left the room and I could hear the machine making noises and I can only assume it was taking measurements. After five minutes they returned to the room and started marking areas on the mask. The mask was then removed and I was able to get up and go home.
My coordination and walking has improved dramatically although my neck remains stiff and headaches constant. Paracetamol takes the edge off and I have sleeping tablets at hand if necessary.
The support I have had from family, friends and colleagues has been wonderful and I appreciate that very much.
Friday will be my first radiotherapy treatment and before I know it the two weeks treatment will be over.
Happy New Year!!
Leigh
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