Been too long since I sat myself down in front of this computer to update blog. I am feeling guilty as I know it gets checked frequently - so my apologies for being slow. But, hell, I am slow at the moment - in every way. Stuffing gets knocked out of me if I try to do anything for much longer than 10 minutes...
First is good news: received confirmation on Thursday that I am in full remission! Big relief. Amazing to think I am 'disease free' as I write this. I go back in to Guys on Monday (10th) for the second round of chemo - still need another bash on the head to get as many of those leukaemic cells totally destroyed - I have been told I will not be having the same regime as before, Flagida, which I am very pleased about. It's such toxic stuff, and now that it has done the job and gotten me into remission, the hospital want to ease off a bit on the poison - apparently my body is nearing the level of maximum toxicity it can take, so am having something a little less powerful called Mitoxantrone, though it will still include cytarabine unfortunately. God knows what the side effects will be - I only hope it doesn't make me agitated like before. That was horrible...and also not to succumb to hideous nightmares would be a great relief. All will be revealed in the coming week...
Was hoping for my final few days of "home leave" to be calm and relaxing, but unfortunately far from it. Had a full week of hospital visits: Day unit on Monday, Tuesday and Friday. Monday was a failed bone marrow biopsy - which was painful - even more so knowing I had to come back the next day to start over again. Which I did and it was eventually successful - but as bone marrows biopsies go it took a long time and I had to endure a lot of pain - probably the most unpleasant one I have ever had. A lot of "sucking-in-air-and-blowing-out-swearing" from me - bone marrow was hard to "apple core out"... Allergy clinic at St Thomas's on Wednesday (3 hours) a visit to UCH Macmillan Cancer Centre for a second opinion on Thursday (5 hours). Then another five hours in Day Unit on Friday for some blood tests. All week I have been spiking a temperature in the evenings so they were wanting to check that I am not harbouring some nasty infection. So my final week of peace and relaxation in September sunshine was busted up by all the medical stuff. Very frustrating. And to top it all Luigi has lost his mobile phone on the bus today, so got to hack down to Peckham Rye tomorrow and get another one, and open up another account and get all the paperwork done etc etc. Just don't have the energy for it all right now. Washing to do, bag to pack, fridge to clean...
However did spend a lovely blue-sky-sunshine hour in Horniman Gardens this afternoon with Mel. The sky was full of jet-plane vapour trails criss-crossing high into the atmosphere. The Horniman trees still putting on a good display of green and lots of autumn flowers basking under the midday sun. I basked in the dapple shade of a London Plane Tree with a baseball cap on and factor 50 on my ears!
I did manage to make the Private View of Bite on Tuesday at the Mall Galleries. Went with Luigi and my brother and sister. Some good print work - and loads of people to bump into and talk with (hi to any of you out there reading this - was great to see you!). All a bit overwhelming and exhausting though. I was wiped out after 45 minutes.
Paralympics have been amazing to watch and found myself shouting at the tv on numerous occasions when gold medals where in the offing (and what a lot in the bag too!). My stamina has grown over the last two weeks, and have managed on several occasions to walk slowly up Taymount Rise - and for those of you who know it, that is no mean feat - especially with chemo still rattling round my system.
Now its cracking on for midnight and I need to get myself some sleep. This is as-dull-as-ditch-water-blog, but maybe will be more exciting once I am back into the bosom of Guys Hosptial (ha ha).
As usual many thanks for blog comments, emails, texts, phone calls and visits - been so great SEEING people - even if I have been laid out like some beached whale under a rug.
1 comment:
Tessa!! Such good news about remission - I will never core an apple again without thinking of you. damn the fridge - sitting under the trees is timre better spent - although I gather we are kissing the sun goodbye this week. Glad to hear toxicity of this next dose is slightly less than before - we seek every small comfort! lots of love Lisa xxx
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