Well things are moving along now and I seem to be spending more days on the road to Portsmouth and back every week. I have had every possible test going I reckon.
I saw a different consultant last week which has me even more confused now as he agrees with everything I have been doing thinking and saying !!! so instead of trying to convince me I am wrong and they are all right he reckons I should carry on doing what I'm doing with the diet and acupuncturist.
I now have 2 friends having blood tests at the beginning of August which is brilliant so we will all have our bloods taken on the same day then the samples will be sent to Tooting for cross matching and testing. this will take about 6 weeks.
I then have 2 other people being tested at the end of August so again we will all get tested on the same day.
I have a skin cancer dermotology consultation next week to check out a couple of moles to make sure they are nothing nasty and then some more bloods but hopefully after that things should get back to normal - - well - as normal as a chronic illness can be.
If anyone reading this would like to consider having a blood test done or finding out any more about donation please call my transplant nurse on 02392 286 000 extension 1007. you can give your name and mine or no name at all, but if you are even thinking about it please give them a call and they can provide any information needed.
I had a car accident last week and damaged my little car and have had a few aches and bruises but all in all I was very lucky. Just have all the agro with the insurance company now. Life never runs smoothly does it!!
Anyway, luckily I was not going too fast and so I am hoping the damage is only cosmetic, but time will tell once all the parts are taken off and looked at properly by a very helpful and knwledgeable friend who loves his cars.
Had a great day at Hoghclere castle on Sunday where we had 51 Mustangs all lined up and some brilliant friends old and new, had a good laugh and some lucky people won some prizes - and on top of that we raised some money for the Naomi House Childrens Trust, so a good day all round.
Right - off to London to meet my niece, nephew and great niece while thay are over here on holiday - - so a nice day out for this old bird!!
Thursday, 28 July 2011
Sunday, 17 July 2011
tunnel of noise
So there I am driving down to Portsmouth yet again. 5th time this month. How much fuel does this use and more so how much on bloody car parking!! exorbatent prices when you have no choice but to park there and not my fault when a 10 min consultation takes 5 hours and £9:80 later!!!
Anyway, off I go via the country route this time hoping that the lavendar fields are in bloom. Yes they are but am running a bit late and the sun is only just popping out from behind the clouds so decided to call in on the way back instead.
Arrive at the hospital - now how much shall I put in the pay and display car parking today? Hopefully a fiver should do it. Wander on up to the top floor - Renal. Yet more blood tests to be done to see if the iron they have been injecting into me is remaining in me or being washed away. This little nurse is an expert. straight in and gets my blood first time - makes a change.
While sitting waiting my Surgeon walks by and stops for a chat - she must think I'm an absolute nightmare - - - every time I see her I bawl my eyes out - has become an instant reaction now when I see her. Stupid and very annoying but that's what pent up emotions do to you. Anyway, had another little chat with her and yet again she reckons I will be "a very good candidate" (God how I hate that phrase). She has started to arrange a date for the people who are thinking of having a blood test done and myself, to go for an awareness evening where we meet donor and recipients to chat and find out their experiences and not just listen to the doctors and surgeons processes. I hope this will be useful and helpful to us all.
I then saw Anna the Transplant coordination nurse and gave her the details of the 5 people who have offered to be tested for me. She will then contact them, have a chat and explain everything and arrange for us all to have our bloods taken on the samne day so that the matching can take place. We then have to wait another 6 weeks to see if anyone is a good match for me.
I have blood type B so if anyone with blood type B or O would like to volunteer to have a blood test done please please let me know. To start with it is just one blood test.
After this I trudge to the other end and side of the hospital to the MRI scan centre. Sat looking at rows and rows of empty blue hospital chairs and blank walls. Why are hospitals so boring??
Eventually my turn and in I go and put the lovely flattering robe on and sit and wait in my little cubicle, and wait and wait.
Eventually the assistant comes to collect me and takes me through where I sit and wait in another chair
"We are so busy today we have to work through our lunch brake so the machine operator has just gone to get some food, should not be long" so I wait again. She comes and weighs me and asks me to put everything in a locker as nothing is allowed into the room.
Here comes the operator with his lunch so I get shown into the room, lie down on the movable shelf that will move me into the machine - bit like a conveyor belt going through a tunnel. I lie down and get strapped in, and have panic button placed in my hand.
Now before I came I had to decide on what music to take with me that I wanted them to play through the headphones while I was in the machine. On facebook friends gave various suggestions but I opted for Imelda May because it's upbeat and has a lot of base in it which I hoped would drown out the noise of the bings, bangs and bongs of the machine. I also took Seal and Soul as I thought this may relax me more.
Well not actually sure why I bothered, the headphones were so quiet I was straining to hear anything at all apart from the bing bang bongs which seem to come at you from all angles.
As they slid me into the tunnel of the machine I heard something like "Hold your breathe and breath and breathe normally" How the hell do you do both at the same time, I was thinking and when exactly.
Well the machine lowers me down and then slides me into the tunnel - now I'm not normally a panicky person but for someone who is this must be hell. My mind started to race and I started to think, "what will happen if there is a power cut and I'm stuck in here" Stupid I know but the mind is evil at times. I was not realy worried and and knew all would be ok so I just closed my eyes and tried hard to concentrate on the whispering soulful voice I could just about hear through the headphones. I was straining to hear but thought they would turn it up once I was inside the machine completly. All of a sudden the bing bang bong starts up and I can not hear any soulful music at all. I waited till it stopped, breathed in and asked them to turn it up. Bang Bang Bing starts again, wait till it stops and ask again - no change. At one point I hear as faint as faint can be "Hold your breathe" so I did - - now I used to do a lot of scuba diving and had a good set of lungs but this seemed endless - and breathe normally, I decided when the banging stopped, and repeat.
So 45 mins later the machine moves me out slowly and it's all finished. "I thought I had gone deaf" I said to the operator who had been talking in the headphones to me "No the volume is broken" !!! "Well the banging certainly hasn't"!! No response - - not amused!!.
Thought that was it till he said could I wait a while outside as he wanted to look at something and I may have to go back in again. Why? Did I breathe or not breathe at the right time? did i move unexpectantly?
No he saw something higher up and wanted to take another look.
Sat outside and waited a while and had to go back in and do it all again. Getting quite used to this now and just lay thinking about sunshine, happy days, road trips in my little car, swimming with manatees and scuba diving. Just drifting off when I head "Hold your Breath" Back to the Bing Bang Bong and realkity again.
Well left the hospital and drove back the scenic route again and this time stopped at the Lavendar farm, took some pictures, bought a few nic nacs and on my way again.
Another exciting day at Portsmouth Hospital!!
Had dinner with a friend who asked how I was feeling about having the transplant now and I said I still hate the idea because you are told the average life span of a donated kidney is 10 years but everything I have read and all the people I know thatn have had one, it only seems to last on average 2 years not 10 and then i will have no choice but to be on a machine 3 days a week so how the hell will I live and support myself.
He told me not to worry about what will happen after 2 years when and if the kidney fails but think about all the good fun times I could have FOR 2 years or longer, think of all the things I can do FOR 2 years and If I do not have this done ASAP then maybe I will be too weak to have it done at all if I wait any longer.
That sort of struck a chord and in some ways I have become a little more accepting if it.
I still hate the idea but what other choice have I got.
Also, just think how amazing it is that 5 people have actually volunteered to do this for me. FOR ME!!
And just think how great it will be to be able to say thank you and share some more fun times with those peole rather than spending endless days in bed sleeping, feeling sick and not able to enjoy the fun activities I love.
No question realy- - - just has to be done.
I am in awe of those that have volunteered for me and I am shocked at the people that have come forward. They were not the ones that I thought would have offered and the ones I thought may offer have not. strange world eh?
You certainly learn who your friends are at a time like this. To give so unselfishly is amazing. I am sure deep down they are thikning "God I hope the bloods don't match" and if they are that is just fine.
The fact that they have even considered having a blood test to see if we match is just amazing and I have no words to express my thanks to them. It is a big thing to consider and if it does not work out, there will be no regrets just a huge thanks for thinking about me in the first place.
Anyway, off I go via the country route this time hoping that the lavendar fields are in bloom. Yes they are but am running a bit late and the sun is only just popping out from behind the clouds so decided to call in on the way back instead.
Arrive at the hospital - now how much shall I put in the pay and display car parking today? Hopefully a fiver should do it. Wander on up to the top floor - Renal. Yet more blood tests to be done to see if the iron they have been injecting into me is remaining in me or being washed away. This little nurse is an expert. straight in and gets my blood first time - makes a change.
While sitting waiting my Surgeon walks by and stops for a chat - she must think I'm an absolute nightmare - - - every time I see her I bawl my eyes out - has become an instant reaction now when I see her. Stupid and very annoying but that's what pent up emotions do to you. Anyway, had another little chat with her and yet again she reckons I will be "a very good candidate" (God how I hate that phrase). She has started to arrange a date for the people who are thinking of having a blood test done and myself, to go for an awareness evening where we meet donor and recipients to chat and find out their experiences and not just listen to the doctors and surgeons processes. I hope this will be useful and helpful to us all.
I then saw Anna the Transplant coordination nurse and gave her the details of the 5 people who have offered to be tested for me. She will then contact them, have a chat and explain everything and arrange for us all to have our bloods taken on the samne day so that the matching can take place. We then have to wait another 6 weeks to see if anyone is a good match for me.
I have blood type B so if anyone with blood type B or O would like to volunteer to have a blood test done please please let me know. To start with it is just one blood test.
After this I trudge to the other end and side of the hospital to the MRI scan centre. Sat looking at rows and rows of empty blue hospital chairs and blank walls. Why are hospitals so boring??
Eventually my turn and in I go and put the lovely flattering robe on and sit and wait in my little cubicle, and wait and wait.
Eventually the assistant comes to collect me and takes me through where I sit and wait in another chair
"We are so busy today we have to work through our lunch brake so the machine operator has just gone to get some food, should not be long" so I wait again. She comes and weighs me and asks me to put everything in a locker as nothing is allowed into the room.
Here comes the operator with his lunch so I get shown into the room, lie down on the movable shelf that will move me into the machine - bit like a conveyor belt going through a tunnel. I lie down and get strapped in, and have panic button placed in my hand.
Now before I came I had to decide on what music to take with me that I wanted them to play through the headphones while I was in the machine. On facebook friends gave various suggestions but I opted for Imelda May because it's upbeat and has a lot of base in it which I hoped would drown out the noise of the bings, bangs and bongs of the machine. I also took Seal and Soul as I thought this may relax me more.
Well not actually sure why I bothered, the headphones were so quiet I was straining to hear anything at all apart from the bing bang bongs which seem to come at you from all angles.
As they slid me into the tunnel of the machine I heard something like "Hold your breathe and breath and breathe normally" How the hell do you do both at the same time, I was thinking and when exactly.
Well the machine lowers me down and then slides me into the tunnel - now I'm not normally a panicky person but for someone who is this must be hell. My mind started to race and I started to think, "what will happen if there is a power cut and I'm stuck in here" Stupid I know but the mind is evil at times. I was not realy worried and and knew all would be ok so I just closed my eyes and tried hard to concentrate on the whispering soulful voice I could just about hear through the headphones. I was straining to hear but thought they would turn it up once I was inside the machine completly. All of a sudden the bing bang bong starts up and I can not hear any soulful music at all. I waited till it stopped, breathed in and asked them to turn it up. Bang Bang Bing starts again, wait till it stops and ask again - no change. At one point I hear as faint as faint can be "Hold your breathe" so I did - - now I used to do a lot of scuba diving and had a good set of lungs but this seemed endless - and breathe normally, I decided when the banging stopped, and repeat.
So 45 mins later the machine moves me out slowly and it's all finished. "I thought I had gone deaf" I said to the operator who had been talking in the headphones to me "No the volume is broken" !!! "Well the banging certainly hasn't"!! No response - - not amused!!.
Thought that was it till he said could I wait a while outside as he wanted to look at something and I may have to go back in again. Why? Did I breathe or not breathe at the right time? did i move unexpectantly?
No he saw something higher up and wanted to take another look.
Sat outside and waited a while and had to go back in and do it all again. Getting quite used to this now and just lay thinking about sunshine, happy days, road trips in my little car, swimming with manatees and scuba diving. Just drifting off when I head "Hold your Breath" Back to the Bing Bang Bong and realkity again.
Well left the hospital and drove back the scenic route again and this time stopped at the Lavendar farm, took some pictures, bought a few nic nacs and on my way again.
Another exciting day at Portsmouth Hospital!!
Had dinner with a friend who asked how I was feeling about having the transplant now and I said I still hate the idea because you are told the average life span of a donated kidney is 10 years but everything I have read and all the people I know thatn have had one, it only seems to last on average 2 years not 10 and then i will have no choice but to be on a machine 3 days a week so how the hell will I live and support myself.
He told me not to worry about what will happen after 2 years when and if the kidney fails but think about all the good fun times I could have FOR 2 years or longer, think of all the things I can do FOR 2 years and If I do not have this done ASAP then maybe I will be too weak to have it done at all if I wait any longer.
That sort of struck a chord and in some ways I have become a little more accepting if it.
I still hate the idea but what other choice have I got.
Also, just think how amazing it is that 5 people have actually volunteered to do this for me. FOR ME!!
And just think how great it will be to be able to say thank you and share some more fun times with those peole rather than spending endless days in bed sleeping, feeling sick and not able to enjoy the fun activities I love.
No question realy- - - just has to be done.
I am in awe of those that have volunteered for me and I am shocked at the people that have come forward. They were not the ones that I thought would have offered and the ones I thought may offer have not. strange world eh?
You certainly learn who your friends are at a time like this. To give so unselfishly is amazing. I am sure deep down they are thikning "God I hope the bloods don't match" and if they are that is just fine.
The fact that they have even considered having a blood test to see if we match is just amazing and I have no words to express my thanks to them. It is a big thing to consider and if it does not work out, there will be no regrets just a huge thanks for thinking about me in the first place.
OK, so last post was a bit depressing - sorry all. I try not to get upset by all this but have a few off days and to be honest when I have these off days the best way to get over them is to write it all down and get rid of the frustration, anger and the feeling of complete desperation.
So after the shock of the Surgeon telling me things were moving a lot quicker than I expected and she wants to bring everything forward by about A YEAR!! I went home sobbed a lot, hugged the dog again and again, my friend came over and made me dinner and made me see things differently, made me kaugh at myself, played devils advocate and started me smiling again - although deep down I do not believe a word of it!!! LOL
On one day last week I had 3 apponitments in one day.
The first one was to have my boobs squashed in a vice 4 times. Not at all enjoyable but this saved my life 5 years ago so lets hope the outcome is the same this time round.
Then I had to see the nurses who punctured me yet again to take more blood samples. As usual they wanted to take from the arm that was having none of it and did not want to give anything up so I came out looking like a kid that had played with the first aid box. Crosses of sticky plaster on both arms, wrists and a hand.
Next appointment was with my consultant who prodded and poked and listened and sent me away for another few weeks saying "Keep drinking the water and eating and sleeping"
Easy for him to say when food makes me feel sick, be sick and not want to eat. Kidneys keep me awake at night and do not allow me to sleep for more than 2 hours at a time even though I am exhausted all the time and could curl up and sleep anywhere - including under my desk at work ( Yes - I have tried it) but as soon as I lie down - - BING - wide awake again. 10 mins later exhausted again.
Never mind "Onwards and upwards" as they say.
Next came the visit to my accupuncturist. He is my miracle worker at the moment. I arrive at his clinic feeling down, misserable, nauseous, sick and grumpy, tired, exhausted and thoroughly pissed off with everything. After a few needles here and there I walk out as if floating on air feeling happy, content and ready to take on the world again. Whenever I leave his clinic the first thing I do is go and eat. Just amazing - he restores my appetite straight away, no more nausea or sickness and I go home and sleep for a full 6 hours. Total Bliss.
Now if only he could restore a little more Kidney output I would not need this horrendous dialysis or transplant. I just keep telling him to "Turn your needles up and give me more energy and get the kidneys to get rid of more toxins". I just have to keep positive thinking and pray it kicks in soon. He has managed to get another ladies kidney output another 5%. 5% does not sound much but 5% ontop of my 8% takes me back to how I was 18 months ago, where I was fit enough to work full time and not feel exhausted all day, still be able to ride the horses 3 times a week, still scuba dive and enjoy it, walk the dogs for over an hour, dance, shop and eat what and when I liked. I have none of those pleasures any more.
So come on Needles - - start doing some magic for me.
So after the shock of the Surgeon telling me things were moving a lot quicker than I expected and she wants to bring everything forward by about A YEAR!! I went home sobbed a lot, hugged the dog again and again, my friend came over and made me dinner and made me see things differently, made me kaugh at myself, played devils advocate and started me smiling again - although deep down I do not believe a word of it!!! LOL
On one day last week I had 3 apponitments in one day.
The first one was to have my boobs squashed in a vice 4 times. Not at all enjoyable but this saved my life 5 years ago so lets hope the outcome is the same this time round.
Then I had to see the nurses who punctured me yet again to take more blood samples. As usual they wanted to take from the arm that was having none of it and did not want to give anything up so I came out looking like a kid that had played with the first aid box. Crosses of sticky plaster on both arms, wrists and a hand.
Next appointment was with my consultant who prodded and poked and listened and sent me away for another few weeks saying "Keep drinking the water and eating and sleeping"
Easy for him to say when food makes me feel sick, be sick and not want to eat. Kidneys keep me awake at night and do not allow me to sleep for more than 2 hours at a time even though I am exhausted all the time and could curl up and sleep anywhere - including under my desk at work ( Yes - I have tried it) but as soon as I lie down - - BING - wide awake again. 10 mins later exhausted again.
Never mind "Onwards and upwards" as they say.
Next came the visit to my accupuncturist. He is my miracle worker at the moment. I arrive at his clinic feeling down, misserable, nauseous, sick and grumpy, tired, exhausted and thoroughly pissed off with everything. After a few needles here and there I walk out as if floating on air feeling happy, content and ready to take on the world again. Whenever I leave his clinic the first thing I do is go and eat. Just amazing - he restores my appetite straight away, no more nausea or sickness and I go home and sleep for a full 6 hours. Total Bliss.
Now if only he could restore a little more Kidney output I would not need this horrendous dialysis or transplant. I just keep telling him to "Turn your needles up and give me more energy and get the kidneys to get rid of more toxins". I just have to keep positive thinking and pray it kicks in soon. He has managed to get another ladies kidney output another 5%. 5% does not sound much but 5% ontop of my 8% takes me back to how I was 18 months ago, where I was fit enough to work full time and not feel exhausted all day, still be able to ride the horses 3 times a week, still scuba dive and enjoy it, walk the dogs for over an hour, dance, shop and eat what and when I liked. I have none of those pleasures any more.
So come on Needles - - start doing some magic for me.
Monday, 27 June 2011
Transplant Surgeon
Off to get my blood results this morning - - - - - or so I thought!!!
Took a slow drive down to the coast in the sunshine and took a little detour around the coast to see the sea, boats, birds and scenes.
I was not looking forward to today - not for any reasons of unpleasantness or pain or anything but just because last time I came to see this particular Transplant Surgeon I had to wait 5 hours before I got my 10 min slot and cost me over £9 in the car park. Good way for them to make a bit more money eh??
Anyway, after a nice slow drive down and look around the seaport I made my way into the car park. Went and got my supply of coffee and up to the top floor with my book to wait - - and wait - - and wait!!.
Admittedley not as long as the last time - just over 1 hour 45 mins so quite good going.
Anyway, after being measured for height, weighed, more blood tests and blood pressure, oh and of course the obligatory pee in a pot, I eventually got to see the surgeon.
"So how are you?"
"Fine, feeling good apart from a sore throat and being a little tired"
"Good - so when are we going to put the Fistula in your arm?"
To say I was a bit gob smacked was an understatement. I thought I was here for some blood results - not to get the next operation slot!!.
Well after a little discussion things became clearer. She seems to think that I should have a transplant ASAP!!! Bit shocked as only spoke about going back on the transplant list last week. I have not had my final Cancer scan yet and she wants to start tieing knots in my viens so thay can be used for Dialysis.
All a bit overwellming and I just burst into tears like a blabbering idiot. Have no idea why I was crying.
I know I have to have the transplant eventually but guess I just had not realised it would be so soon. All seems to be moving a bit fast - which I should be pleased about as everyone moans about being on the list for years but I just can not get nmy head around it yet.
She thinks I will be a "perfect candidate". What is this - - election week!!
After I calmed down and managed to ask a few sensible questions, she agreed to arrange for me to speak with some other people that have had transplants and also people that have donated their kidneys to other people.
As much as I do not want this operation and I sure as hell do not want to live on a machine in the hospital for 3 days a week - 7 hours a day, which is what it would have to be if I go back on dialysis - I was just hoping I could last a little longer before having to have the transplant.
Also, I have some friends and relatives who are considering offering me their kidneys and are willing to go and have their blood tested to see if there is any chance of a match and the last thing I want to do is influence them, so I asked if the transplant team could arrange for these friends to also meet with people that have donated their kidneys, so that we can get a true picture of what happens and what does not and how it affects you etc. rather than just hearing the medical process.
Well after that shock I drifted out of the hospital, got to my car and sobbed and sobbed and sobbed for not sure how long. How can this be happening I thought. I truly thought I would at least get through the summer with a bit of freedom and a chance to enjoy a little more time with my car and Mustang friends, the sunshine and open spaces and a few weeks with my family, my niece and great niece who are coming to visiting in July and August, but it seems she wants to start the ball rolling ASAP.
I'm just not ready for this.
I sat in the car sobbing and then text my friend saying what a bad day I was having and feeling very sorry for myself. After a few choice words of wisdom, a few wise cracks and a lot of listening I felt a bit better - well I had stopped sobbing anyway and was at least able to drive without causing an accident for others.
It akes about an hour to an hour and a half to get home which is good realy as it gave me time to think, calm down and stop crying. I could not face work and all the questions, so I came home and hugged the dog and of course had a few more tears. My friend called to check I was ok and got me laughing again and made me realise things are not so bad, the sun is shining and I still have all my own hair and teeth!! Not bad for an old bird.
So here we are, on the verge of another obstacle race. I know I have a few more hurdles to jump but just hope there are not too many water features to drown in along the way.
Amazingly writing it all down does help and I wonder why I did not do this years ago (Probably cos there was no internet in those days - I hear you say)
So, next step is to have another full body scan to double double check there is no Cancer left. Then I have to see the Consultant again to get my blood results to make sure I do not have HIV or anything contageous.
I then have to see a dermatologist to make sure I have no skin cancer and then the "Small operation in day surgery to have my veins tied off, to help produce a stronger vein for the Dialysis" (That I am still adament that I will not be having!!).
So, a few more hurdles yet before I can have a normal life again - but she reckons "I'm a good Candidate" so what more can I say!!
Let the next race begin !!!!
Took a slow drive down to the coast in the sunshine and took a little detour around the coast to see the sea, boats, birds and scenes.
I was not looking forward to today - not for any reasons of unpleasantness or pain or anything but just because last time I came to see this particular Transplant Surgeon I had to wait 5 hours before I got my 10 min slot and cost me over £9 in the car park. Good way for them to make a bit more money eh??
Anyway, after a nice slow drive down and look around the seaport I made my way into the car park. Went and got my supply of coffee and up to the top floor with my book to wait - - and wait - - and wait!!.
Admittedley not as long as the last time - just over 1 hour 45 mins so quite good going.
Anyway, after being measured for height, weighed, more blood tests and blood pressure, oh and of course the obligatory pee in a pot, I eventually got to see the surgeon.
"So how are you?"
"Fine, feeling good apart from a sore throat and being a little tired"
"Good - so when are we going to put the Fistula in your arm?"
To say I was a bit gob smacked was an understatement. I thought I was here for some blood results - not to get the next operation slot!!.
Well after a little discussion things became clearer. She seems to think that I should have a transplant ASAP!!! Bit shocked as only spoke about going back on the transplant list last week. I have not had my final Cancer scan yet and she wants to start tieing knots in my viens so thay can be used for Dialysis.
All a bit overwellming and I just burst into tears like a blabbering idiot. Have no idea why I was crying.
I know I have to have the transplant eventually but guess I just had not realised it would be so soon. All seems to be moving a bit fast - which I should be pleased about as everyone moans about being on the list for years but I just can not get nmy head around it yet.
She thinks I will be a "perfect candidate". What is this - - election week!!
After I calmed down and managed to ask a few sensible questions, she agreed to arrange for me to speak with some other people that have had transplants and also people that have donated their kidneys to other people.
As much as I do not want this operation and I sure as hell do not want to live on a machine in the hospital for 3 days a week - 7 hours a day, which is what it would have to be if I go back on dialysis - I was just hoping I could last a little longer before having to have the transplant.
Also, I have some friends and relatives who are considering offering me their kidneys and are willing to go and have their blood tested to see if there is any chance of a match and the last thing I want to do is influence them, so I asked if the transplant team could arrange for these friends to also meet with people that have donated their kidneys, so that we can get a true picture of what happens and what does not and how it affects you etc. rather than just hearing the medical process.
Well after that shock I drifted out of the hospital, got to my car and sobbed and sobbed and sobbed for not sure how long. How can this be happening I thought. I truly thought I would at least get through the summer with a bit of freedom and a chance to enjoy a little more time with my car and Mustang friends, the sunshine and open spaces and a few weeks with my family, my niece and great niece who are coming to visiting in July and August, but it seems she wants to start the ball rolling ASAP.
I'm just not ready for this.
I sat in the car sobbing and then text my friend saying what a bad day I was having and feeling very sorry for myself. After a few choice words of wisdom, a few wise cracks and a lot of listening I felt a bit better - well I had stopped sobbing anyway and was at least able to drive without causing an accident for others.
It akes about an hour to an hour and a half to get home which is good realy as it gave me time to think, calm down and stop crying. I could not face work and all the questions, so I came home and hugged the dog and of course had a few more tears. My friend called to check I was ok and got me laughing again and made me realise things are not so bad, the sun is shining and I still have all my own hair and teeth!! Not bad for an old bird.
So here we are, on the verge of another obstacle race. I know I have a few more hurdles to jump but just hope there are not too many water features to drown in along the way.
Amazingly writing it all down does help and I wonder why I did not do this years ago (Probably cos there was no internet in those days - I hear you say)
So, next step is to have another full body scan to double double check there is no Cancer left. Then I have to see the Consultant again to get my blood results to make sure I do not have HIV or anything contageous.
I then have to see a dermatologist to make sure I have no skin cancer and then the "Small operation in day surgery to have my veins tied off, to help produce a stronger vein for the Dialysis" (That I am still adament that I will not be having!!).
So, a few more hurdles yet before I can have a normal life again - but she reckons "I'm a good Candidate" so what more can I say!!
Let the next race begin !!!!
More Hospital Visits
Well what a mad few days this has been!!
Needed to have more bloods taken and attempted it 3 times before it happened as I think the whole countty was waiting to have the needle stuck in!! Been in and out 3 times this week and at last managed 3 little bottles of blood.
I have been having intravenous iron to try and improve my energy levels and so after 10 weeks the consultatnt wanted to see if the body was retaining that iron or getting rid of it as quickly as they were injecting it in, so off for more blooed tests so the powerful ones can decide what is going on inside me.
Right - That is now done and now just waiting to see what the results say.
Next was an appointment to see my Cancer Consultatnt.
This was the BIG meeting - - Infact it was the quickest meeting but the most improtant one.
I was going with all the butterflies and nausea in the hope of being told that he would discharge me from his consultants register as I had been Cancer Free for 5 years.
Sitting in the waiting room was weird. I have felt fine for ages but sitting here now on my own and waiting to see the big chief, I felt ill, sick, nauseous, worried, sweating and perturbed. I had been through so much and sitting here now was the worst feeling ever - very strange.
Anyway, eventually I get called in and have the weght, height blood pressure checked and then "Would you like to climb on the table so I can examine you"
Oh god here we go again - assume the position, light on, rubber gloves on - - and breathe!!!
"Well - - - - that'sthe last time you will need one of those""
"So does that mean I'm clear to go??"
"Yes - - All clear - you are formally discharged from my register - 5 Years all clear"
"YES" Big thumbs up and big big grin.
"I beat you Cancer!! You did not get me!! 1 up to me!!
To say I was excited was an understatement. Very strange.
I left there on a high knowing I had beat it and the past 5 years of ups and downs and hell had passed.
Now onwards and upwards as they say.
I got to work and wanted to shout and tell everyone "I Have beaten CANCER"
But - - a friend had recently been told she had breast cancer, and as I walked in she was coming through the door ready to say farewell to everyone as it was her last day before she was off to have the operation.
I just could not go telling everyone my good news when she was just starting out on her journey - but I did quietly tell her and hope it helped to encourage her and give her strength to know that it can be beaten and she too can get through this and beat it, and I'm sure she will. She is strong willed and has an excelent team of surgeons on her side.
I did eventually tell those that are closest to me and who have been there from the start and it was brilliant to be told by them that they were "proud of me" for getting through it with such strength and coming out the other side stronger and more informed.
I know they could not help to cure me or put things right but just to have a friendly smile, a wink of the eye, a shoulder to ball your eyes out on for half and hour, a hankie, a laugh and occassionally the odd large glass, well that's what get's you through the tough days. Thank you - - you know who you are and I would not be here today if it was not for you xx xx
I do fully understand how hard it must be to be on the outside looking in and not having a clue what to do or say - but to just be there and offer a smile, and ear, a shoulder, a hankie or a hug means just about the world to you when it seems like your world is closing in on you.
If you are going through this right now, do not push people away. I did because I am the most stubborn and independent person around but people DO want to help but they just do not know what to do or say. Do not take offence at some of the remarks - they just feel uneasy and unsure so, whatever they do or say or do not do or say - just remember - they are there for you and sometimes you have to ASK and sometimes - just being there is enough.
So - That was the big hurdle I had been waiting to jump over.
I am now Cancer Free which means that the Kidney Consultants cannow consider trying to help me live again.
I know it is not the type of living I want - but it seems to be all they can offer me - - The chance of a transplant - - So I can now go back on the transplant list - officially.
Needed to have more bloods taken and attempted it 3 times before it happened as I think the whole countty was waiting to have the needle stuck in!! Been in and out 3 times this week and at last managed 3 little bottles of blood.
I have been having intravenous iron to try and improve my energy levels and so after 10 weeks the consultatnt wanted to see if the body was retaining that iron or getting rid of it as quickly as they were injecting it in, so off for more blooed tests so the powerful ones can decide what is going on inside me.
Right - That is now done and now just waiting to see what the results say.
Next was an appointment to see my Cancer Consultatnt.
This was the BIG meeting - - Infact it was the quickest meeting but the most improtant one.
I was going with all the butterflies and nausea in the hope of being told that he would discharge me from his consultants register as I had been Cancer Free for 5 years.
Sitting in the waiting room was weird. I have felt fine for ages but sitting here now on my own and waiting to see the big chief, I felt ill, sick, nauseous, worried, sweating and perturbed. I had been through so much and sitting here now was the worst feeling ever - very strange.
Anyway, eventually I get called in and have the weght, height blood pressure checked and then "Would you like to climb on the table so I can examine you"
Oh god here we go again - assume the position, light on, rubber gloves on - - and breathe!!!
"Well - - - - that'sthe last time you will need one of those""
"So does that mean I'm clear to go??"
"Yes - - All clear - you are formally discharged from my register - 5 Years all clear"
"YES" Big thumbs up and big big grin.
"I beat you Cancer!! You did not get me!! 1 up to me!!
To say I was excited was an understatement. Very strange.
I left there on a high knowing I had beat it and the past 5 years of ups and downs and hell had passed.
Now onwards and upwards as they say.
I got to work and wanted to shout and tell everyone "I Have beaten CANCER"
But - - a friend had recently been told she had breast cancer, and as I walked in she was coming through the door ready to say farewell to everyone as it was her last day before she was off to have the operation.
I just could not go telling everyone my good news when she was just starting out on her journey - but I did quietly tell her and hope it helped to encourage her and give her strength to know that it can be beaten and she too can get through this and beat it, and I'm sure she will. She is strong willed and has an excelent team of surgeons on her side.
I did eventually tell those that are closest to me and who have been there from the start and it was brilliant to be told by them that they were "proud of me" for getting through it with such strength and coming out the other side stronger and more informed.
I know they could not help to cure me or put things right but just to have a friendly smile, a wink of the eye, a shoulder to ball your eyes out on for half and hour, a hankie, a laugh and occassionally the odd large glass, well that's what get's you through the tough days. Thank you - - you know who you are and I would not be here today if it was not for you xx xx
I do fully understand how hard it must be to be on the outside looking in and not having a clue what to do or say - but to just be there and offer a smile, and ear, a shoulder, a hankie or a hug means just about the world to you when it seems like your world is closing in on you.
If you are going through this right now, do not push people away. I did because I am the most stubborn and independent person around but people DO want to help but they just do not know what to do or say. Do not take offence at some of the remarks - they just feel uneasy and unsure so, whatever they do or say or do not do or say - just remember - they are there for you and sometimes you have to ASK and sometimes - just being there is enough.
So - That was the big hurdle I had been waiting to jump over.
I am now Cancer Free which means that the Kidney Consultants cannow consider trying to help me live again.
I know it is not the type of living I want - but it seems to be all they can offer me - - The chance of a transplant - - So I can now go back on the transplant list - officially.
Monday, 30 May 2011
Letter writing
Well this week I had to write one of the hardest ever letters I have had to write.
I did not know where to start.
I had to write and ask my family members if they would be willing to have blood tests done to see if they were a match for me and then if they were a match, would they be willing to donate one of their Kidneys to me.
The first to respond was my 86 year old Dad.
I cried for hours - - - not sure if it was joy, relief, depression or what but it sure hit me like a hammar in the face.
I could not make light of this any longer and had to own up to the fact that it was happening, I'm getting sicker and need a transplant. I'm not imortal any longer!!
Off to my consultant tomorrow morning to find out some results from the blood tests taken last week and also to ask loads of questions about the transplant.
So now I have just a few weeks to wait to see what my blood results bring.
I did not know where to start.
I had to write and ask my family members if they would be willing to have blood tests done to see if they were a match for me and then if they were a match, would they be willing to donate one of their Kidneys to me.
The first to respond was my 86 year old Dad.
I cried for hours - - - not sure if it was joy, relief, depression or what but it sure hit me like a hammar in the face.
I could not make light of this any longer and had to own up to the fact that it was happening, I'm getting sicker and need a transplant. I'm not imortal any longer!!
Off to my consultant tomorrow morning to find out some results from the blood tests taken last week and also to ask loads of questions about the transplant.
So now I have just a few weeks to wait to see what my blood results bring.
Monday, 23 May 2011
Memories
I have realised that I have a group of friends that have only known me since I have been ill and know nothing of the previous life I have lived.
I have had a very happy and eventful life and have been very priviledged to share some great times and experieces with many friends around the world.
I would love for friends and aquaintencies from USA, South Africa, Kuwait, Philipines, Malaysia, Egypt, Dubai, Australia, New zealand, Fiji, Scotland, Ireland, Wales and of course UK and anywhere else I have forgotten to post up a fun memory of times before I was ill just to proove I had a life before this.
I have had a very happy and eventful life and have been very priviledged to share some great times and experieces with many friends around the world.
I would love for friends and aquaintencies from USA, South Africa, Kuwait, Philipines, Malaysia, Egypt, Dubai, Australia, New zealand, Fiji, Scotland, Ireland, Wales and of course UK and anywhere else I have forgotten to post up a fun memory of times before I was ill just to proove I had a life before this.
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