The swollen arm episode could have happened at a better time, I must say. My Canadian brother was staying for only 6 days, and two of them we spent mostly in A&E at the local hospital! In fact at one time we thought we were going to have to say our goodbyes while I was sitting on a trolley covered with monitors, drips etc. Luckily that didn't quite happen. Visiting A&E is the most dispiriting experience. You spend hours and hours siting on a hard chair in a waiting room, in our case half of which was taken up with building works, builders milling about doing nothing very much, the incessant noise of various machines and the smell of wet plaster and paint. On the Monday afternoon, in between these interminable waits, I was sent for a chest x-ray (clear), then an ultrasound scan, which pinpointed a blood clot in the subclavian vein in my shoulder and also in the jugular vein. These could be two clots or one. So I was prescribed some Tinzaparin injections and told that I would have to take these for the rest of my life. I have to say this was a bit of a shock, though I've got used to the idea now. After all, I do subcutaneous mistletoe injections twice a week already, and these are no different.
Although the hospital wanted to admit me, I persuaded them that I'd be OK at home, so we were finally released and actually went out to the pub for a meal, as I wasn't feeling too bad, and it was my brother's last night with us. But during the night the arm swelled up even more alarmingly. In my ignorance I had assumed that the first injection would bust the clot and the arm would return to normal size. I now understand that it doesn't work that way, and might take quite a time. Not to mention the risk of part of the clot breaking off and getting to the heart. This is unlikely, but I was told to watch for shortness of breath etc, just in case. Anyway, since the A&E doctor had told us to come back if the arm got worse, and since it was now sticking out away from my body in the most peculiar fashion, we got brother to pack his bags preparatory to getting him to Birmingham airport somehow, and took him with us back to A&E. Another 4 hours there, even worse this time as there had been a road traffic accident and the corridors were full of injured people on trolleys, some of them crying with pain. OMG it was awful. I felt I shouldn't really be there, wasting their time. Eventually it was decided that I might as well go home as be admitted, since they wouldn't do anything different to me in the hospital than I could do for myself at home, eg the injections and keeping the arm elevated, especially when sleeping (haha, I just don't sleep at present!) at night. So that night and subsequently I've kept it up on two pillows and that does seem to help.
We dropped poor old brother at Shrewsbury station. I hated saying goodbye to him there. Our original plan had been for me to drive him to the airport and spend the night with him in the airport hotel prior to taking him to his early morning flight the next day, but we had to abandon that plan and unceremoniously dump him at the station. He was OK, of course, and got back to Toronto just ahead of that dreadful snowstorm that has engulfed Ontario and New England.
Next day I was due to go to the hospice for some complementary therapy. The therapist decided that even reflexology would be unsafe in view of my new tendency to form blood clots, so we had to abandon that idea. Instead she called in the physiotherapist who gave me some very helpful advice about how to look after my arm - lots of gentle stroking from hand to shoulder, lots of handcream as the skin is very thin and fragile all of a sudden. I'm due to go and see her next week, and will possibly try a compression bandage.
So yesterday we had our long-awaited visit to Christies. We spent over an hour with one of my favourite registrars, whom I've been seeing for a year now and who is very easy to talk to. We prioritised looking after the arm, so I've been prescribed Fragmin injections which I think are pretty much the same thing as Tinzaparin. We did discuss the pros and cons of oral anticoagulants such as Warfarin, but the doc seems to prefer the injections, and there's no problem at all about having them alongside chemo (as I suspected).
I was keen to reduce the painkillers I'm currently taking. At present I have virtually no pain, but we don't know whether this is because there is no pain (due to success of radiotherapy) or because I'm on painkillers, if you see what I mean. So we came up with a schedule to reduce the Dexamethasone (steroid) and eventually come off it altogether, then reduce the Pregabalin (for nerve pain), and finally the morphine. But at any time if things start to hurt I can increase them again. So it's basically a matter of playing with them for a while.
Next, we need a full body CT scan to see exactly what's happening, so that will be arranged before Christmas. Then I got a chance to really talk through the pros and cons of having more palliative chemo at this stage, with John sitting beside me madly writing notes. Thank goodness he does this, and does it well, so we have a good record of what's been discussed. I have been going back and forth on the topic of chemo, but I now think that I should give it another go. The consequences of letting the cancer romp ahead without any treatment are not pleasant to contemplate. Yes, the docs can handle pain relief, but they can't do much about loss of function. I'm already aware that I'm gradually losing function in my left hand. Already I can't feel my little finger or the one next to it. That doesn't stop me doing anything yet, eg I'm a touch typist and can still type properly - I just can't feel when those two fingers touch the keys - but that will start to happen. The doctor reassured me that sickness and nausea can be much better managed these days than heretofore, but he couldn't reassure me about hair loss. In my silly female way, that's the thing I dread the most. It's like a badge telling the world 'I've got cancer'. But at present we don't know what chemo regime I'd be on, and it may be one where I wouldn't lose my hair. I didn't last time or the time before. I'm most likely to have Capecitabine again combined with Cisplatin. My next appointment is 8th January, so we will make the final decision then. In the meantime, there is John's birthday and Christmas to look forward to - chemo-free!
