...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

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.....

...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

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.

JANE'S HAD A BRAKE !!

This is Martin writing and yes I have spelt brake correctly. Jane is currently in hospital with a broken left femur. Let me tell you what happened....

On Monday this week she finished her final radiation session. All was going well, the usual swelling and difficulty walking followed but with the thought ' it was all over ' tempered all of that. However on Wednesday her left leg became extremely painful and the swelling increased. So much so that we contacted the hospice where Jane was due to go for rest bite in a couple of weeks. The arrangements were changed and Jane was going to go in on Friday for a week to give everyone a rest. Wednesday night, Catherine and her friend Donna volunteered to stay up with Jane as the pain and swelling were getting worse. On Thursday morning I was informed that at 4am they had to call out a locum who pronounced that it looked like her leg was broken... What !! but she hadn't done anything, I want a second opinion..!!
I telephoned the hospice who said to take her to the local A&E to be sure. The ambulance duly arrived at 1045am and taking one look at her leg and her face, didn't try to move her but wheeled her straight into the ambulance using her own wheelchair where she had now been sat for 12 hours without moving.
A&E had been pre-warned by the hospice and she was wheeled straight into a cubicle where she waited.... and waited... and waited. It took another frantic phone call from me to the hospice who in turn telephoned A&E before they sprung, snail like, into action. I can go into lots of detail here but I wont suffice to say that in the end there were 4 A&E nurses, one consultant, a physio nurse and 50.. yes 50 milligrams of morphine before they managed to get her out of the chair and onto a trolley. The screaming was unbearable at times and I was in bits. A subsequent X ray proved her left femur was indeed broken right where the tumour had eaten away at the bone. Disaster!! Jane was put into a recovery room where she was monitored up and I spent a while explaining that she had actually seen a bone specialist a few weeks earlier and they had talked about this eventuality.
That evening she was transferred as an emergency to the hospital where that specialist works. Once again, I had to explain her case history and try to remember what medication she had been taking or was due.. (note to self .. write this down prior to anything else happening). There then followed a long, very painful and traumatic night.. for both of us. Jane was delirious with the amount of morphine but still in pain. I was stressed to the max at her predicament and still remembering medication that she should have had and had been forgotten. My God, that has got to be the worst 24 hours of my life without a doubt... (so far).
Morning came. The staff had fitted a morphine pump that I was operating for her quite illegally apparently but it was the only way to maintain the levels of morphine that kept her from screaming in pain and gave her the chance to sleep.
At 0845 the consultant came and saw her and announced that he was going to order a special part for her leg to replace the tumoured bone. He could operate a week Monday....(what ??? a week Monday !!!!) Jane's face said it all. The consultant apologised but said he couldn't do it any earlier. She was to go for an X ray that afternoon to measure the femur then she could wait for the operation at the Hospice... good news at last followed closely by more bad news when she was told that the X ray machine was broken and couldn't be fixed till Monday.
So there we have it, she is in hospital awaiting an X ray on Monday (hopefully) and then onto sanctuary at the hospice to await an operation to replace a bit of bone in her leg...

I got home at 3pm, phoned everyone I knew to tell them whats happened and went to bed at 7.45 pm where I slept until 8am this morning. I have just come from the hospital now, although still in a lot of pain she is fairly comfortable...

Rock Bottomer !!

Ok - I was wrong. And not for the first time you may say !
It could get worse - and it has got worse. BUT its nearly over, just one more Rx (radiotherapy) treatment to go on Monday. One more. Then its all over. Finished.

Emotionally I'm much more stable. I still have the odd 'wobble' where I don't quite 'trust' my thoughts - where I feel a bit out of control - but in general the 'madness' seems to have passed. 'Madness' isn't a term I use lightly either because that's exactly how it felt - the sheer extremes of emotions I was feeling, and reacting to.

My saviour came in two friends, Caroline of course, and Sandra. I met Sandra through Caroline a few years ago and she is cut from the same cloth - sensible, wise, funny and so kind. Talking things through with them was exactly what I needed to get things into perspective again - to appreciate what my body, and more importantly mind, was going through - that it wasn't permanent and it would pass and most of all not to be afraid. Fear exacerbates everything. And it is very frightening to lose control of your thought processes - and KNOW you are. Taking their advice Ive tried to relax and not fight it - to accept it and allow it to wash over me. Not easy but it does work.

Martin, who I thought would treat the whole thing as a bit of a joke, has been incredibly supportive, and intuitive - a word I never thought I would use about him. He can tell by the way I speak how I'm feeling psychologically - not by what I say or do. He has been calm and just allowed me to get whatever is bothering me out of my system at the time. Sitting with me while I sobbed my heart out in the garage for no apparent reason. And then trying to persuade me to sit down when I went all manic and decided I really, really needed to make a cake - right now this minute! It must be so stressful for him and he does look very tired lately. Mary has booked me into the hospice for a weeks respite on 4th November and I think its as much for his benefit as mine. I wasn't sure at first - a whole week doing nothing - but she is right. Its exactly what I will need to get my equilibrium back again and hopefully sort out my sleeping problems. And Martin can have some much needed rest too knowing I'm alright and safe.

So - what has got worse? The pain. Pain in my legs, both of them from my hips down to my knees. I can hardly weight bare now and am back using the zimmer around the house and wheelchair outside. And using an awful lot of oramorph. I am assured this is normal, Rx irritates before it starts to work and it could still be a week or more before I start to feel the benefit of it. That's ok - I can wait. As long as it does work in the end !

My radiotherapy experience has completely overshadowed the most important event taking place - starting Afinitor. All is well so far as I can tell. I still have a sore mouth but that's all. And I am checking my tumours, the ones I can feel on my head and in my armpit, and they havn't grown which has to be a good sign. So as far as I'm concerned I have every reason to be optimistic and positive. I'm seeing Dr P. on Thursday for my first check up and blood tests so I may know a bit more then.

Tomorrow Grace is coming for the day and we are going to be photographed for an article in 'Yours' magazine (5th Nov) which should prove interesting as I look absolutely dreadful right now !! All bloated and puffy and red, like a big tomato. I shall have to let Catherine loose on me again make up wise - if she plasters it on thick enough it may just fool the camera!

Rock Bottom.....

Day 7 of radio therapy....Day 7 of Afinitor....7 Days since Zometa.....

.....and I think I have hit rock bottom. At least I hope its rock bottom, I cant imagine it getting any worse.

Physically my body is suffering with the radiation. Combined with the steroids I'm taking it has caused my feet and legs to swell alarmingly - in fact today I couldn't walk, Martin had to take me to hospital in a wheelchair. As planned with Dr P. I have reduced the dose of steroid to the minimum but this didn't make any difference and the radiographer today suggested I see my GP and get some diuretics. So I did. Frusamide. And I'm weeing away like mad now after only one dose so I'm really hoping it works. Apparently radio therapy is well known for affecting the lymphatic system and swollen feet etc... are common - so I may not see a huge improvement until next week when my course finishes. The pain in my legs has been pretty bad but well controlled by the oramorph I'm taking and should start to improve soon.

The physical symptoms are bad enough, the pain and discomfort - but the real struggle I'm having is psychological. During the space of an hour Ill lurch from the pits of despair - wondering why the hell I'm putting myself through this, whats the point? etc....to determined positivity, willing to endure more, gritting my teeth prepared for whatever is coming next. Ive never experienced anything like it before. I guess its a form of depression - which can be a side effect of radio therapy. Whatever it is its horrible - and exhausting. And worse than any pain in my opinion. I'm still not sleeping very well, or very much, so can spend up to 18 hours a day spinning from one mental state to the other. I also feel a bit 'shakey' and 'panicky' at times. I hope this ends soon - I'm not sure how much more I can take even though I do recognise whats happening and I know its all down to the treatment I'm receiving.

3 days after having the Zometa infusion I had a day of 'achey/fluey' like symptoms. Nothing too bad and it only lasted a day. The next morning I was fine.

Afinitor has so far been the kindest with the only side effect a sore mouth and loss of sense of taste. I can handle that easily !!

Like I said, I really hope this is it - this is the worst I get - and from tomorrow things start to improve.....because I'm really not sure I can cope with any more....