How are you today ?
Your diary entries remind me of my own time going through chemo last year.
It’s a definite roller coaster ride and at times extremely scary but honestly there are also positives on the journey. Meeting ( virtually ) all the wonderful people on this forum for instance
None of us ever expected to be going through this but it’s the cards we’ve been dealt so we are all plodding along as best we can.
Here is my transplant journey ( after having 4 cycles of chemo )
My first meeting with the Transplant Consultant was in February 2023, it was via video call as the Transplant unit in Glasgow is about 90 mins away.
She went over the whole process and explained everything in great detail. I had previously
read “ seven steps to transplant “ a book that is available from your ward and it is also on the Anthony Nolan website, so I had a kind of idea what she was going to tell me.
She did finish the call by saying “ if you think the transplant process will be easy then you haven’t understood what I’ve told you today “
( one of those scary moments ) She also said it could take 3-4 months at least to get to transplant.
I received a telephone call in March from the Transplant Co-ordinator to say they had found 2 x potential donors. Both female, aged 25 & 27 yrs old. One was an 11/12 match and the other 12/12.
I must admit I was very emotional when she called as I was always terrified that maybe there wouldn’t be a match for me ( scary moment ) and now there’s a positive again … there were two possible matches. They were going with the 12/12 match.
Now that the ball was rolling I was told my transplant would go ahead in May !!! ( scary but exciting time )
I was getting prepared for this and had started to shield in preparation to go to Glasgow Transplant Unit , when I received a call from my local Consultant to say my last bone marrow test had shown that my MRD was showing up as positive ( another scary moment ) so my transplant would be postponed in the hope that they could get a suitable treatment that could hopefully get me into remission or reduce my MRD to a suitable level to enable me to have the transplant.
This was a really scary time as transplant had been in touching distance, so felt like having the rug pulled from under me !
It was decided that they would try a different chemo which had been suggested by a leading Acute myeloid leukaemia (AML) Consultant in Guys Hospital , London.
On the day I should have been admitted for Transplant I was going back into my local hospital to begin the next cycle of chemo.
Fast forward a few months and thankfully my MRD had been reduced to a very low level
( not complete remission ) but the transplant team were happy for transplant to go ahead.
Wow !! I was relieved I can tell you. Next date for transplant was agreed for middle of June. However
I received a call from Co-ordinator a few wks before to say , it wasn’t going ahead as the donor was going on holiday so it was now being moved to July.
So basically it was 3rd time lucky and my transplant did go ahead on July 12th this year.
I am now 114 days post transplant and physically I do feel really good thankfully. ( a definite positive )
Mentally, it’s slightly different. I have always been a very strong person and always felt in control. I now have moments where I feel anxious and I worry more.
I was extremely lucky and suffered very few side effects from all of the chemo and the transplant itself went relatively smoothly aswell.
I am trying to think as positively as I can, also to appreciate that I am feeling physically stronger and that I’m able to get back to some kind of new normal.
I’m also grateful to all donors ( especially mine ) without them , we wouldn’t be getting this second chance of a potential new life. ( another definite positive )
I would say to you and your husband , there are so many ups, downs , twists & turns to get through on this journey but you will get there. Always ask as many questions of your medical team as they are the experts. Leukemia is so complex but the Haematologists are amazing and are always working away in the background to get us the best possible treatments.
Right !!! I think I’ve written a short novel !!!
I really wish you & your husband the very best.
Keep posting when you can and let us know how things are going. This forum and all the lovely people involved in it are brilliant. We’ve all been through similar experiences and still are.