.......it sounds like the title to a 1970's German porn film doesn't it? Except it isn't - and I have just been given the date for my operation.
16th November.
That's another 12 days.
I'm trying not to get too downhearted about this. But it isn't easy.
The prosthesis wont be ready until 13th November so there is nothing can be done and Mr Tillman is putting me at the top of his next list.
But another 12 days !!
That will be almost a month I shall have been lying in this bed. The nurses and I are trying to work out a way of my having either a bath or a shower whilst keeping my leg in traction, which could prove interesting. So far I have managed with all over washes. 'Interesting' maybe is the wrong word - has anyone ever tried to poo whilst lying down in bed? (whilst sober?) It's not easy. Not at all easy.
But another 12 days !!
That's a week and a half !!
I must find something to do - something to be positive about.
I was really pleased with the article in 'Yours' magazine today. It will really help raise awareness of both Kidney Cancer and the new life extending drugs used to treat it. And what a beautiful photo of Grace (wasn't that bad of me either considering!)
But another 12 days !!...........
Wednesday, 4 November 2009
Tuesday, 3 November 2009
Return to the Bucket List.
The past 12 days Ive spent lying in bed, unable to do very much, feeling totally vulnerable and completely reliant on others for the most basic of needs, have been so frustrating. Its no wonder Ive felt so despondent at times - and then very angry with myself for feeling this way. Its been a vicious circle of pain relieved by morphine which has sent me a bit 'loopy'.
However, we have discovered that 'Entonox' (the 'gas and air' stuff that ladies use in labour) is really effective for when I have my traction changed. Its quick acting and short lasting so I don't spend the rest of the day floating around on 'Planet Morphine' having interesting hallucinations and conversations with people who don't exist! Its not quite as good at relieving the pain, after all this is a broken femur we are talking about, but it takes the 'edge' off it so I can bear my leg being moved whilst the bandage and traction is re-applied.
Talking of the 'break' I saw it in all its glory on the xray/scan and a right mess it is too. Not a clean break at all, both ends of the bone have crumbled and split into many pieces. No wonder its so painful when I'm moved with them all grating against each other. Mr Tillman is going to tidy up the ends, remove the bits of tumor and then insert the bionic femur - and I will be better than new ! I also saw the tumor in my right femur which is much smaller, contained within the cortex so the bone is intact, and looks fine - to me anyway. Obviously we will be keeping an eye on it but it looks as if we have caught it in time.
I'm just finishing week 4 of Afinitor and all the signs so far are that it is working - and working well !! No growth in the tumors I can feel and the only side effect I have noticed is a sore mouth. I'm having some blood tests done tomorrow just to check things are going well, but I am allowing myself to be really optimistic that Afinitor is working as a sequential treatment for me. And what fantastic news this is for every KC patient here in the UK.
So there we have it. I'm back on track again after a short but fairly nasty deviation! And now I feel I'm ready for some kind of challenge - something to test out my new bionic leg and to renew my faith in 'me'. A return to my 'Bucket List' is called for I think.
My 'Bucket List' -things I want to do before I kick the bucket - has been sadly neglected of late. There are several small things left on there - and one BIG one. So Ive decided to go with the big one. I may as well. I think a BIG one is needed right now after all Ive been through.
One last adventure.
One last fling at the world.
But where?
There are still so many places I would love to see.
And more importantly how? Martin keeps reminding me I need to earn some money or I shall bankrupt him before I pop my clogs!! Ill start to save seriously now and who knows maybe some magazine/news paper would be willing to sponsor me as a cancer patient to write about my experience?
So - where would I like to go for this final big trip?
There can be only one place, one final frontier for me - Canada. The Rockies and the Inner/Outer passageway up the coast visiting the towns made famous during the gold rush, Skagway etc. A spectacular trip all round but most importantly its the last Great Wilderness for one last great adventure.
A chance to prove a cancer patient CAN.
And for those of us who arn't going to win the final battle in this war, we can show that, even in the process of losing it, we can gain such a lot.
However, we have discovered that 'Entonox' (the 'gas and air' stuff that ladies use in labour) is really effective for when I have my traction changed. Its quick acting and short lasting so I don't spend the rest of the day floating around on 'Planet Morphine' having interesting hallucinations and conversations with people who don't exist! Its not quite as good at relieving the pain, after all this is a broken femur we are talking about, but it takes the 'edge' off it so I can bear my leg being moved whilst the bandage and traction is re-applied.
Talking of the 'break' I saw it in all its glory on the xray/scan and a right mess it is too. Not a clean break at all, both ends of the bone have crumbled and split into many pieces. No wonder its so painful when I'm moved with them all grating against each other. Mr Tillman is going to tidy up the ends, remove the bits of tumor and then insert the bionic femur - and I will be better than new ! I also saw the tumor in my right femur which is much smaller, contained within the cortex so the bone is intact, and looks fine - to me anyway. Obviously we will be keeping an eye on it but it looks as if we have caught it in time.
I'm just finishing week 4 of Afinitor and all the signs so far are that it is working - and working well !! No growth in the tumors I can feel and the only side effect I have noticed is a sore mouth. I'm having some blood tests done tomorrow just to check things are going well, but I am allowing myself to be really optimistic that Afinitor is working as a sequential treatment for me. And what fantastic news this is for every KC patient here in the UK.
So there we have it. I'm back on track again after a short but fairly nasty deviation! And now I feel I'm ready for some kind of challenge - something to test out my new bionic leg and to renew my faith in 'me'. A return to my 'Bucket List' is called for I think.
My 'Bucket List' -things I want to do before I kick the bucket - has been sadly neglected of late. There are several small things left on there - and one BIG one. So Ive decided to go with the big one. I may as well. I think a BIG one is needed right now after all Ive been through.
One last adventure.
One last fling at the world.
But where?
There are still so many places I would love to see.
And more importantly how? Martin keeps reminding me I need to earn some money or I shall bankrupt him before I pop my clogs!! Ill start to save seriously now and who knows maybe some magazine/news paper would be willing to sponsor me as a cancer patient to write about my experience?
So - where would I like to go for this final big trip?
There can be only one place, one final frontier for me - Canada. The Rockies and the Inner/Outer passageway up the coast visiting the towns made famous during the gold rush, Skagway etc. A spectacular trip all round but most importantly its the last Great Wilderness for one last great adventure.
A chance to prove a cancer patient CAN.
And for those of us who arn't going to win the final battle in this war, we can show that, even in the process of losing it, we can gain such a lot.
Monday, 2 November 2009
Sooper Dooper Traction Thingy for sale.....
Many, many thanks to Tony, the IT specialist here at St Mary's, for fixing me up with my own PC right here in my room. So now I can blog and email away to my hearts content without having to bother the nurses to push me around in my bed.
Its such a relief to finally be here, especially as there were times when I thought I wouldn't make it. NHS bureaucracy drove me to the edge of despair last weekend. St Mary's were willing and keen to take over my care but the ROH were reluctant to lend a small piece of equipment I needed, an attachment for my bed to keep my leg in traction.
Just a small piece of metal. Nothing high tech. or computerized. Just a small 'block and tackle' type metal thingy. St Mary's didnt have one and the ROH wern't willing to lend it out.
How ridiculous was that?
In floods of tears I pointed out to an NHS Manager (grrrrrr...) that wherever I was the traction thingy would be, be it here or in St Mary's or in the blooming car park. I wasn't depriving anyone of it. St Mary's tried to order one specially for me but it would have taken over a week to deliver it. And the ROH just wouldn't listen to reason. In the end I was in utter, utter despair and feeling completely helpless. What was the point in fighting cancer I thought when it felt like the enemy right now was the NHS and its stupid rules and regulations?
The negativity I was experiencing was pressing me down, making me unable to think of anything else. I was frantically searching for something positive to hang on to when all I wanted to hang on to was the neck of the NHS manager and squeeze - very hard !!
I couldn't see past the end of this episode - beyond the operation that will put me back on my feet both physically and psychologically - because this is not like me. Not like me one bit and the one thing I want to provoke in others is inspiration - NOT commiseration.
Finally someone saw sense, although not without much signing of forms and swearing of oaths that the traction thingy would return with me for my operation (what did they think I was going to do with it? sell it on Ebay?) My spirits lifted immediately.
I can get back to the job in hand.
Fighting mRcc and sticking pins in a little voodoo doll of an NHS manager !!
Its such a relief to finally be here, especially as there were times when I thought I wouldn't make it. NHS bureaucracy drove me to the edge of despair last weekend. St Mary's were willing and keen to take over my care but the ROH were reluctant to lend a small piece of equipment I needed, an attachment for my bed to keep my leg in traction.
Just a small piece of metal. Nothing high tech. or computerized. Just a small 'block and tackle' type metal thingy. St Mary's didnt have one and the ROH wern't willing to lend it out.
How ridiculous was that?
In floods of tears I pointed out to an NHS Manager (grrrrrr...) that wherever I was the traction thingy would be, be it here or in St Mary's or in the blooming car park. I wasn't depriving anyone of it. St Mary's tried to order one specially for me but it would have taken over a week to deliver it. And the ROH just wouldn't listen to reason. In the end I was in utter, utter despair and feeling completely helpless. What was the point in fighting cancer I thought when it felt like the enemy right now was the NHS and its stupid rules and regulations?
The negativity I was experiencing was pressing me down, making me unable to think of anything else. I was frantically searching for something positive to hang on to when all I wanted to hang on to was the neck of the NHS manager and squeeze - very hard !!
I couldn't see past the end of this episode - beyond the operation that will put me back on my feet both physically and psychologically - because this is not like me. Not like me one bit and the one thing I want to provoke in others is inspiration - NOT commiseration.
Finally someone saw sense, although not without much signing of forms and swearing of oaths that the traction thingy would return with me for my operation (what did they think I was going to do with it? sell it on Ebay?) My spirits lifted immediately.
I can get back to the job in hand.
Fighting mRcc and sticking pins in a little voodoo doll of an NHS manager !!
Saturday, 31 October 2009
...update from Martin 31/10/09
Jane says Hi to everyone and thank you for your kind comments and flowers. They have really cheered her up. She unfortunately cannot get to a puter until Monday which is a shame because she is itching to post and bring you all up to date.
I am fortunate to work only a couple of miles away from where Jane is and am able to pop at lunchtimes with my sandwiches and watch her eating her three course meal !!
Yesterday I popped in to be told she had been 'wheeled' down the day room where a live guitarist was playing for the patients. I entered the room at the start of the second chorus of 'why why why Delilah' and witnessed a nurse throwing a pair of knickers at the unfortunate fellow. He was even more put off his stride when he discovered that they were a pair of 'Y' fronts !!
Jane was lying on her bed, arms swaying in time with the beat and I'm sure she would have the next to throw, if she had been wearing any !!
As you can gather things are a lot better for Jane and her condition has improved greatly for someone with a broken femur. She is being looked after by a great bunch of people who are well up for a laugh. The food and room are fantastic which goes a long way when you're stuck in a bed.
Jane and her Dr think that next Wednesday will be the first they hear about her operation as it has taken time to order the 'part'.
Oh.. from Jane, don't forget to get your copy of 'Yours' magazine (out 4th Nov) where there is an article written about her fight against Cancer along with some rather 'fetching' piccies.
I have just left her 'eyeing' up OK magazine and jotting down the editors web address... I think its a good job she can't get to a keyboard..!!
Martin
Thursday, 29 October 2009
Can we fix it? - Yes we can !!
Today is Thursday 29th October and thanks to the kind ladies here at St, Mary's I have been allowed to use their computer and update my blog. Although there are huge gaps in my memory as to what exactly happened when I was in The Royal Orthopaedic (Martin, unfortunately for him, has a very vivid picture) I'm going to try and remember best I can.
Saturday was the first day I was aware of where I was and knew roughly what had happened. I 'came round' in my room with an absolutely exhausted looking Martin sitting next to me with his head lying on my bed. He had been sat there since Thursday afternoon (I think), afraid to leave me because I was unable to operate the PCA (patient controlled anaesthesia) which was delivering the morphine I still needed. He looked dreadful. Honestly, I know Ive said it before but my man is a hero. I'm convinced he saved my life that weekend by staying with me hour after hour, and staying awake. Goodness knows what would have happened if he had left me. Its probably a blessing in disguise that I cant remember anything that happened prior to then.
It was a small, but very clean, room I had with just about room for the 3 nurses who were standing round my bed discussing the 'traction' I needed to stabilize my leg. I didn't understand what they were talking about, plus I was still very confused and spaced out from what had happened. I kept slipping off to 'Planet Morphine' complete with some very interesting hallucinations. I think the trauma to my body hadn't helped either and I was still in shock. So I felt very vulnerable and frightened and just clung on to Martins hand for dear life.
Martin did understand, however, the importance of stabilizing my leg, of keeping it as still as possible, as this would reduce and control the excruciating pain I was still experiencing every time it was moved even a fraction.
Mr Tillman, the orthopaedic surgeon, came to see me then and explained the procedure he intended to perform to 'fix' my femur. This would involve inserting a specially made plastic and silver 'rod' into my left femur where the bone had crumbled. It would take a week to 10 days to make this special 'rod' to my measurements and in the meantime I would stay in hospital on traction.
A week to 10 days???
Still, there was nothing I could do about it and I brightened up when told I would be transferred to St Marys on Monday and so spend most of the time there.
So, back to this 'traction' and what it would entail. Nothing surgical, a tight bandage would be wrapped around my leg from top to bottom and a weight attached to my foot to hold it straight and stop the bone fragments from grating against each other - a really, really unpleasant sound !! I was told it may prove a little painful when first done (understatement of the year!) but should be easier from then on as it would need repeating daily.
The first time was, quite frankly, a complete nightmare. Even though I still had enough morphine in my system to drop a fully grown elephant the pain from the bone fragments rubbing together soon had me screaming and crying and mauling poor Martins hand. It seemed like ages but within a few moments the traction was on and the relief I felt was instantaneous. At last I could relax a bit and Martin could go home for a well earned shower and rest.
We thought the worst was over but there was still more to come.....
Saturday was the first day I was aware of where I was and knew roughly what had happened. I 'came round' in my room with an absolutely exhausted looking Martin sitting next to me with his head lying on my bed. He had been sat there since Thursday afternoon (I think), afraid to leave me because I was unable to operate the PCA (patient controlled anaesthesia) which was delivering the morphine I still needed. He looked dreadful. Honestly, I know Ive said it before but my man is a hero. I'm convinced he saved my life that weekend by staying with me hour after hour, and staying awake. Goodness knows what would have happened if he had left me. Its probably a blessing in disguise that I cant remember anything that happened prior to then.
It was a small, but very clean, room I had with just about room for the 3 nurses who were standing round my bed discussing the 'traction' I needed to stabilize my leg. I didn't understand what they were talking about, plus I was still very confused and spaced out from what had happened. I kept slipping off to 'Planet Morphine' complete with some very interesting hallucinations. I think the trauma to my body hadn't helped either and I was still in shock. So I felt very vulnerable and frightened and just clung on to Martins hand for dear life.
Martin did understand, however, the importance of stabilizing my leg, of keeping it as still as possible, as this would reduce and control the excruciating pain I was still experiencing every time it was moved even a fraction.
Mr Tillman, the orthopaedic surgeon, came to see me then and explained the procedure he intended to perform to 'fix' my femur. This would involve inserting a specially made plastic and silver 'rod' into my left femur where the bone had crumbled. It would take a week to 10 days to make this special 'rod' to my measurements and in the meantime I would stay in hospital on traction.
A week to 10 days???
Still, there was nothing I could do about it and I brightened up when told I would be transferred to St Marys on Monday and so spend most of the time there.
So, back to this 'traction' and what it would entail. Nothing surgical, a tight bandage would be wrapped around my leg from top to bottom and a weight attached to my foot to hold it straight and stop the bone fragments from grating against each other - a really, really unpleasant sound !! I was told it may prove a little painful when first done (understatement of the year!) but should be easier from then on as it would need repeating daily.
The first time was, quite frankly, a complete nightmare. Even though I still had enough morphine in my system to drop a fully grown elephant the pain from the bone fragments rubbing together soon had me screaming and crying and mauling poor Martins hand. It seemed like ages but within a few moments the traction was on and the relief I felt was instantaneous. At last I could relax a bit and Martin could go home for a well earned shower and rest.
We thought the worst was over but there was still more to come.....
Monday, 26 October 2009
...update from Martin
Monday 26/10/09 ..2030hrs. Just come from hospital. Jane never made it into the hospice today, some problem with a piece of equipment for the traction.. ie. the hospice haven't got one and the hospital refused (initially) to lend them one... People have now come to their senses and she will be taking the one she's got now with her.. as long as she brings it back.. I know.., Jane was at her wits end and I was beginning to feel the strain.
Jane is still in a lot of pain, MST's and oramorph still on the agenda.. the morphine pump has now been dispensed with as when she asleep there was no one to press the pump. When they change her traction or sheets she needs gas and air as well... good old gas and air. This evening I took her in a double chocolate chip chocolate muffin, cashew nuts, tonic water and bags of aero chocolate balls and got the biggest smile of the evening... it was good to see her smile again.
Fingers crossed we get to the hospice tomorrow as we found out this evening, most of the hospital nursing staff didn't realise she has cancer...
Martin
Jane is still in a lot of pain, MST's and oramorph still on the agenda.. the morphine pump has now been dispensed with as when she asleep there was no one to press the pump. When they change her traction or sheets she needs gas and air as well... good old gas and air. This evening I took her in a double chocolate chip chocolate muffin, cashew nuts, tonic water and bags of aero chocolate balls and got the biggest smile of the evening... it was good to see her smile again.
Fingers crossed we get to the hospice tomorrow as we found out this evening, most of the hospital nursing staff didn't realise she has cancer...
Martin
Sunday, 25 October 2009
Rock Bottomest
I asked Martin to write his version of the events of Thursday and Friday because, as you will see, as from Thursday afternoon I was completely 'out of it' on a very high dose of morphine indeed. But back to the beginning, Wednesday morning I had woken up with my legs more swollen and more painful than ever which was disappointing as i was expecting some improvement by now, 48 hours later i thought i would give Mary a call and see what she thought. Mary thought the same as i did - that i should not be suffering such excruciating pain and swelling now - and that i needed to be an inpatient at the hospice. I left Mary arranging my admittance to St Marys which would be on Friday morning.
The rest of Thursday i did very little, Cat was off work and decided she would cook roast chicken for us that evening - and very nice it was to! I had been sitting in the little wheel chair all day, scared of getting out of it in case it hurt, so by the evening the inevitable happened - i needed the loo. We, the whole family, uhmed and arhed for a while deciding how to do this. Martin and Edward would help me stand and hold onto the zimmer frame and Cat would hold the 'pot'. OH MY GOODNESS - THE PAIN, THE PAIN!! MY GOD THE PAIN!! I was screaming, sobbing and crying, it was simply awful for the kids to see me like that. They were all crying too. I decided then and there that i was going to stay in my chair all night as i wouldn't be able to get out of it on my own. Martin wasn't very impressed by this idea but what choice did i have?
Cat was going out with her friend Donna but would be returning about 1:00am and would sit up with me for a while. Sure enough, Cat and Donna came home at 1 ish and stayed up chatting and watched tv. During this time i decided i wanted to put my feet up, on a low stool. Getting them up was easy enough, but getting them back down was awful - crippling pain - and i was finally convinced something was WRONG - very wrong. Cat called the emergency doctor out - and this was the first time 'break' had been mentioned. He said he thought he had broken my left femur. The doctor left a letter for the hospice which arranged me to have a x-ray on the way there in the morning. He gave me the option of going into the hospital that night via 999 but i refused - I would wait till the morning and have a 'temazepam' to relax me.
It was a long night - Cat, Donna and I was watching an old tv detective series then Donna fell asleep on the sofa. Martin was up early showered and on the phone to St Mary's to learn an ambulance would arrive before 11am, which it did. Fortunately I was asked to stay in the wheelchair to go in the ambulance. It was only on arrival at Selly Oak Hospitals A&E Department, that i needed to be transferred onto a trolley to go to x-ray - and this is the point where i lose the plot - and Martin takes over.
The rest of Thursday i did very little, Cat was off work and decided she would cook roast chicken for us that evening - and very nice it was to! I had been sitting in the little wheel chair all day, scared of getting out of it in case it hurt, so by the evening the inevitable happened - i needed the loo. We, the whole family, uhmed and arhed for a while deciding how to do this. Martin and Edward would help me stand and hold onto the zimmer frame and Cat would hold the 'pot'. OH MY GOODNESS - THE PAIN, THE PAIN!! MY GOD THE PAIN!! I was screaming, sobbing and crying, it was simply awful for the kids to see me like that. They were all crying too. I decided then and there that i was going to stay in my chair all night as i wouldn't be able to get out of it on my own. Martin wasn't very impressed by this idea but what choice did i have?
Cat was going out with her friend Donna but would be returning about 1:00am and would sit up with me for a while. Sure enough, Cat and Donna came home at 1 ish and stayed up chatting and watched tv. During this time i decided i wanted to put my feet up, on a low stool. Getting them up was easy enough, but getting them back down was awful - crippling pain - and i was finally convinced something was WRONG - very wrong. Cat called the emergency doctor out - and this was the first time 'break' had been mentioned. He said he thought he had broken my left femur. The doctor left a letter for the hospice which arranged me to have a x-ray on the way there in the morning. He gave me the option of going into the hospital that night via 999 but i refused - I would wait till the morning and have a 'temazepam' to relax me.
It was a long night - Cat, Donna and I was watching an old tv detective series then Donna fell asleep on the sofa. Martin was up early showered and on the phone to St Mary's to learn an ambulance would arrive before 11am, which it did. Fortunately I was asked to stay in the wheelchair to go in the ambulance. It was only on arrival at Selly Oak Hospitals A&E Department, that i needed to be transferred onto a trolley to go to x-ray - and this is the point where i lose the plot - and Martin takes over.
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