Chemo finished! In the end, was only 3 days worth, not the original 5 as I was told. Plus it was less strong than the stuff I had in August, so didn't have to go through the misery of feeling totally poisoned all over. I am tempted to say "what joy!" though that would be pushing it a bit...
Was sent home last Friday (14th) with my blood counts still up. Quiet weekend at grassmount. Saturday was a perfect harvest-festival kind of day. Lovely crisp light spilling through early autumnal trees and soft baby-blue skies. Holly berries starting to turn red, still the odd sweet-pea flowering plus a profusion of passion fruit flowers. Lisa and Mel dropped round for a cup of tea. Good to see old friends as I am starting to feel very holed up both physically and emotionally.
Now chemo is over the reality of transplant looms ever closer and I still find myself very conflicted over the process. Have had endless discussions with consultants, doctors, nurses, family and friends and it is still a hard call to make. My reality is not so bright . My rare tissue type means there is no match out there, despite a world wide search. The half match i have with my brother (known as haplo identical) has now been dismissed as a not a viable option. So now in am left with the final possibility which is a "double cord blood stem cell transplant" which is using stem cells from the umbilical cord. This method of transplant takes longer to graft and for the new immune system to get up and running properly. So the likelihood is that I won't be very well for some time as i will be without a working immune system, so very susceptible to a range of infections. Plus up to eight weeks in isolation. Which is an awful long time... The transplant is due to take place in mid november. I will need a ton of positive thinking, prayers to all and any gods plus anything else to will my recovery. The future scares me big time so I must just try and focus on the other side of transplant nightmare and believe that I will make it through and touch the end of the rainbow. I don't want crocks of gold - just to carry on living. Being in my studio, sea air on my face, united winning, garden pottering, sky watching, driving in my car...all the ordinary stuff of everyday.
Oh and here's a thing - almost forgot - was re-admitted to hospital on Monday night with a high temperature. Am in a single room (with stunning view of St Paul's and the city) and loaded up with heavy duty antibiotics. I guess it is neutropenia sepsis again as my counts dropped over the weekend and I now have no neutrophils to protect me from germs etc. Hopefully won't be in here too long. But in the meantime I can lie in my bed and look out and see a 'thighs worth' of the Shard.
Tired. More soonish. Big wave to you all... tch xx
Wednesday, 19 September 2012
Sunday, 9 September 2012
HOME LEAVE
Ciao Tutti!
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.
Will try and update a bit more frequently. Meantime take care all and enjoy this wonderful last hit of summer as it comes through. Greetings all around the hemispheres. tch
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.
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