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
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