So we were re-admitted to thee Horse Pistol last Friday evening 27th October 2017.
As you all know, after thee leukemia ( "CMML" variety) got worse, we had to postpone the Fall Euro-Detour...it was a really awful decision to make. We FELT ( rightly or wrongly) that:-1. That we were letting all of you down. 2. That it could look like we were just using being ill as an excuse to postpone. 3. That it would ruin our reputation with promoters/venues/media...4. That we'd be financially really wounded, all of us to varying degrees.5. That we'd wasted all the extremely hard work Edley and Matski had put in for months.6. That we'd really disappoint our fans and seem unworried by letting them down.
YET...we were right to postpone thee detour.
SO:- We began our chemo Saturn's Day 28th October 2017...a new "targeted" drug called "IHDIFA"...only passeed by the FDA in September after 3 yeras of clinical trials, some at my Horse Pistol. Chemo-therapy used to literally destroy your immune system the first week. Then required 3 more weeks fighting to stay alive despite potentially fatal infections opportunistically attacking whilst there is no immunity.
IDHIFA only attacks thee mutated bone marrow cells and ignores healthy bone marrow cells. So IF it works, no damage is done to your body's metabolism. We have only had this new chemo for 3 days and need to be under constant supervision in case it does trigger any negative side effects, or weaken my metabolism further. So far my body has adjusted to thee IDHIFA well and we are hopeful this will continue. One patient at my Oncology Dept. was part of thee clinical trials for 3 yeras and is living a "perfectly normal" life, with no sign of the leukemia. We are really praying thee drug works just as perfectly for me.!!!If it does eventually balance out that way all we need to do is take one pill a day for my L-if-E, with my "stay alive" pills...
ANDWe are HOME tonight at Thee Nest with Musty Dagger. Roxy came to assist me getting home. Leigha is here this evening keeping me coumpany. And Mee cooked me meat and potato pies, Sunday lunch with gravy and apple crumble to feed me thee next few daze!
SO we are being well looked after. We are NOT "cured" etc. Merely OK so far. Still with a potentially terminal, NASTY, illness, but we feel pretty good apart from shortness of breath.
We have an appointmeant with my Oncologist Dr Lee this Thursday couming on 2nd November 2017. They will do blood tests. Then discuss how my metabolism s balancing out or not...
We are hoping to recover, to at least be well enough to take part in certain tours, events and festivals next yera. in the next few weeks we will know for sure...
Most ov all we are so grateful to all of you for supporting me through this. Your visits really cheered me up and broke up the monotony ov just waiting for thee next lot of blood to be taken, vital signs and "Did you have a bowel movement today" !! Having a view ov thee East River was a great plus, though with usually only 2 barges a day filled with oil we'd have loved a few more ships.
Discovering we truly are loved, and knowing we were in thee best of medical hands has been a revelation. There is still so much uncertainty. Never knowing when we will be called back in, or kept in how long, or released is stressful. Knowing there is a ticking time bomb ov disease inside my bones is a source of alarm coumtimes...whenever we feel maudlin though thee loyalty and dedication of all ov you and my extended famille holds me together. THANK YOU !!