Sunday, 27 September 2009
Saturday, 26 September 2009
Thursday, 17 September 2009
Thursday, 10 September 2009
Tuesday morning and off I went for my MRI scan. This was a first for me, Ive had loads of CT scans but didn't really know what to expect with an MRI. The first thing is that you don't need any 'prep' for it. No nasty drink the night before. And no nasty, stingy injection during. But as far as scary, noisy procedures goes it wins hands down. An MRI scanner is a long tube which you are slid into - completely if you have your whole body done. I only needed my legs doing so was lucky enough to have my head poking out of the end. The end of the tube was only inches from my nose though so it must be very claustrophobic if you are right inside the machine. The worst bit is it its so NOISY. Its like having major road works being carried out right next to your head. I was given some head phones to listen to the radio with which did help but for the 20 minutes I was in there the back ground banging and thumping was still clearly audible.
I didn't have long to wait for the results - I had an appointment for that afternoon. That's pretty impressive isn't it? Martin and I arrived on time, and were immediately shown through to the consulting rooms to meet Mr Tillman - the surgeon on Mr Grimer's oncology team. He brought up the MRI scan on his computer - it was a view of both my femurs looking upwards as if from my toes - the bones showing as two dark circles like doughnuts. The right femur looked fine with the tumour visible in the middle bit, the cortex where the bone marrow is, but the surrounding bone unaffected. The left one showed the bone to be thinner with a small break in one area where the tumour had burst out. But basically the bone itself looked pretty good to me.
Mr T. agreed. Not as bad as we originally thought. Wow !! That has to be a first for me !
He then went on to say we have 2 choices. Either an operation which would entail having the affected piece of bone cut out and a metal rod inserted. Quite a major operation really. Or to treat it conservatively with radio therapy and the infusion of Zometa to strengthen the bone.
I asked him what were the chances of my leg breaking if I decided not to have the operation and he said he didn't think it would - unless I had a fall or something. And then even if I did he could still perform that operation.
So as far as I'm concerned the decision was an easy one. I'm feeling well right now and don't want to risk a long recovery process, the risk of infection etc... and more to the point, being off Sutent for an extended period of time, which I would need in order to have this operation. That is far riskier than having my leg break.
Although it was my decision it was nice to hear Mr T. agree with me. I shall have another MRI in 3 months time (it is SO good to hear a doctor confirming I could well still be here in 3 months time!) to see how the infusion is working and review the need for an operation then.
It looks like I'm having a bit of luck for a change - and it is about time isn't it?
Tuesday, 8 September 2009
Saturday morning, nice and early, came the call from the QE hospital - a bed was available for me to go in and have the blood transfusion I needed. Brilliant - plenty of time to get 3 units in and be home by late afternoon. Martin dropped me off at 9.30am and then carried on to his golf competition which was due to finish at around 4pm, so perfect timing. Or so I thought.
The first sign that things may not go according to plan was when I arrived on the ward to be told that, yet again, I had been assigned to a bed on the 'Young Persons Unit'. Not that it really bothered me, a bed is a bed, but there is nothing guaranteed to make you feel old than to be surrounded by a load of teenagers....playing 'Guitar Hero'.
I had some blood taken for x match and a very competent young doctor got a cannula in a vein in my hand, first time too - so we were all set by 10.30am. Just had to wait for the blood to come from the blood bank. And wait. And wait.....
Lunch came - which was absolutely horrible. It was apparently fish pie but I'm sure nothing that ever came out of the sea was in it. Followed by semolina. No wonder the kids on the ward were sending out for MacDonalds.
Finally, at 2pm, my blood arrived and the first unit was put up. I did a quick calculation and realised that, at 2 hours per unit plus a bit to flush each through, I would be lucky to get out this evening. And that was if nothing went wrong. Which of course it did. This is me we are talking about after all !
I settled down for a nice doze and was just dropping off to sleep when I was shaken awake by the Mum of another patient - I was lying in a pool of blood on my bed. The connection between the line and the cannula hadn't been tightened properly and instead of the blood going into my vein it was pouring out on to the bed - and all over me !!
Fortunately this was quickly sorted out by a nurse, me and the bed were cleaned up, and the transfusion was started again. All went well after that until supper time when I was subjected to the awful food again. I was absolutely starving by now and would have eaten almost anything but even I couldn't face the unidentifiable gloop on my plate.
My third unit finally finished at 10pm and it was with a huge sigh of relief that I headed home - and straight to the fridge !!
Friday, 4 September 2009
I attend the Day Unit here every Friday - and what a revelation it's been. I have a ball here !! We get seriously spoilt and pampered with aromatherapy and massages, there is a hairdresser here if you want your hair cut or just washed and blow dried (Kim is really good too - she cut mine beautifully last week), there is a library with books and magazines and lovely comfy easy chairs to just sit in and relax. But best of all is meeting the other patients, who quickly become friends. I'm the youngest by years but that doesn't matter - we have a laugh and a gossip and rarely talk about our illness's. We know we are all in a similar position and that makes it easier to relax in each others company. The food is really good - its cooked here on the premises and the best 'hospital food' Ive ever had.
The Day Unit is run by a small group of nurses and some very special people - the volunteers. These ladies come most days and give their time to make us coffee and toast, serve the lunch and organize things like quizzes. And again they quickly become friends. My little group is just 10 strong, the eldest being a lady of 94. We are a bit short on the men side though with just 4 of them.
The nurses are there to help us of course and in case we have any problems with our medication or we need any help from the other services which operate from there, like the Occupational Health or Physiotherapy department. And there is always a doctor there too if we need to see one. So all in all it's a great place to be for the day and I really look forward to going.
Things are moving on the 'leg' front. My MRI scan is booked for Tuesday morning - and in the afternoon I have an appointment to get the results and hopefully find out when they can operate. And yesterday I saw Dr P. for my usual check up. Everything is ok except my Hb has dropped again, to 8.2 this time. So I'm going into hospital over the weekend to have a transfusion...or two...or three!! It needs doing because the surgeon wouldn't take me to theatre with such a low Hb. It's just a case of timing now - I need to be on a break from Sutent because it can affect the healing process. I'm on day 14 of cycle 17 right now - so the perfect time for an operation would be in about 2 and a half weeks. Fingers crossed it all works out. After the operation I'll be having radio therapy on my legs and a 6 weekly infusion of a drug called Zometa which helps to strengthen bones.
The best and most exciting piece of news Dr P. had for me is that this week he is applying for funding for Afinitor (Everolimus) for me. This new drug is the natural progression from Sutent for when that fails or doesn't work. Although Sutent still appears to be working, the tumours under my arm, on my scalp and on my ribs don't feel as if they have grown, I'm still getting a lot of pain in my knees and thighs - a side effect which seems to be here to stay and means I'm still taking MST, which I would love to be able to stop. After all I've been on Sutent for 18 months now so I think it's the right time. IF I can get funding of course.
All in all there is an awful lot going on 'Team Jane' wise right now - but all of it positive and so encouraging. I'm still being treated with the aim of fighting my disease. No one is giving up on me yet. This gives me such a tremendous boost and makes me more determined than ever because with the very best doctors and the very best treatment the NHS can provide who knows what is possible?