Here we go again. I got out of hospital after chemo number 4 on Thursday night not feeling too bad, no sickness and I had had a blood transfusion to up my Haemoglobin so was feeling reasonably energetic on someone else's fuel. After braving the election debate and thinking I could have done a better job myself, I went to bed and looked at my fat leg which was feeling achy, stiff and looked even fatter. Next morning off to GP- could this be a DVT(known side-effect of some chemos)or recurrence of leio in the vein? Yes of course it could so after lots of frustrating calls by him and me I get sent to the DVT assessment service at Selly Oak almost 3 years to the day from my first visit there at the beginning of this sad tale. To say I had a sinking feeling is to put it very mildly.
The DVT assessment service has changed in that time and mostly gone into the community I was told, I cannot tell you whether this is a successful move as I went to the hospital to a funny sort of in-between ward. There I saw a very charming, pleasant young SHO (junior doc) about 25 I'd guess. By this time Jess, my daughter had joined us and turned her full investigative, don't piss me about, skills on the poor lad; so he had me and her going at him. To cut a long story short, I was scanned, they found a blockage from thigh to knee; they said this was unusual but after checking with my oncology team decided to send me home with heparin injections and check me out when I go for next chemo. Poor SHO had to deliver this news and receive all the frustration back from us all. Anyway this was at 5 in the evening so there was no way I was going to get an MRI till Monday or even the chance of booking an appointment for one. Heparin I knew was a good move at this time so off I tottered back home with a very sore leg.
I will contact my oncologist on Monday and demand an MRI before I go back for next chemo. It was all the usual NHS story I am afraid:
* why didn't they check my leg during the chemo I had told them it was playing up a bit?
* why did I have to wait all day and be trailed about half a mile in a very old wheelchair by Stewart and Jess to get an ultrascan?
* why did it then take another three hours to decide what to do with me?
* why did I not see a Consultant just a disempowered junior?
* why wasn't am MRI ordered immediately - they know my history!
* why do I have to fight these battles all the time?
It's the same with my last scan: the doctor did come to talk to me about it but he couldn't tell me much more. The facts are these and again I have to fight to learn more:
* they hadn't scanned me at the start of my chemo even though I kept asking about this
* I haven't really had one scan like any other before it throughout the whole treatment, they have all been different and shown different things- no consistency
* this could all be academic as I now definitely have mets in stomach and liver but I can't tell you much about them, the descriptions are vague
* same for the lungs I can't get a good picture of progress for good or ill there; but he repeats that the Xrays show some small shrinkage.
It's all a terrible mess but along with the MRI request I am sending over a list of specific questions about size and number of mets on Monday. I am trying not to let all of this get me down and so far succeeding against all the odds maybe it's the sunshine.
So our planned trip to France looks very unlikely for next week and anyway we would have had to try to get around the Icelandic volcano! It seems I must be part of the jet set now as this stream of lava has directly affected not only us but loads of close friends and family:
* our friends Celia and Richard from California are marooned in Paris; we at one time were going to be there with them so that would have been fun!
* Graham and Ruth, brother and sister in law are stuck in Spain and we have just heard they are getting a taxi from N Spain to Paris and getting Eurostar back tomorrow - what a trip!
* Our old friend Rudy from Michigan (once married to Celia!) flew on Thursday to come and see us; he got to Frankfurt saw all the flights cancelled, no idea why, but one was going to Heathrow so he ambled over and got it - it must have been the last flight into the UK.
So if my bloodstream is anything like the lava stream and it feels pretty close at the moment, I am hoping that it and the bloody obfuscations of the health professionals clears a little and that all of us can get back to living our normal boring lives again.