It was official- my diagnosis being Acute Myeloid Leukaemia (AML) NPM1 and FLT3 ITD positive. I ended up spending six weeks in hospital getting chemotherapy treatment. It was a very surreal time. The first night, my son stayed with me in my room. I hadn’t realised at the time, but he was afraid I might go into cardiac arrest because of the stress my body had been through and was going through. My eldest sister came straight away and spent days sitting with me in hospital. The first few weeks I was very groggy and spent most of the time sleeping. I gave in to the treatment. The chemo was a river running through me hopefully washing away the cancer. I was unaware of how sick I was or how dangerously close I came to not making it at all. My sister asked the consultant outright about how ill I was when I was admitted to hospital – it was touch and go. I was shocked to hear that- it was a very scary time. It was then that I realised just how scared I was. I just wanted to get home and see my grandchildren, walk on the moor again. I was obsessed with the fear a becoming a dusty faded photo on the mantle piece.
Thankfully, the weeks passed, my other sister came to see me as well. I was much better by this time and was able to have chats and we spent some really nice time together. After six weeks, my neutrophils were up and I was deemed ready to go home. I was still in danger of getting an infection. As my neutrophils were still quite low, an infection could be a real problem, so we had to monitor my temperature quite closely. In the end I did get an infection and had to go back into hospital for a week.
Over the next few months, I slowly got better and regained my strength. I went on to have two more rounds of chemo, but with verry few side effects. My hair started to come back and by January I was feeling fairly normal. In February, we were able to take a trip to Denmark. My biopsies were coming back negative; I was officially in remission. Things were returning to normal- what a wonderful feeling! We had a good spring. I was able to start running again and was back on my bike. I took back my role of walking the dog, looking after the house, making dinner etc. We looked after the grandkids, had dinner parties and went away to Centre Parcs. Amongst all of the glorious normality, I was still having treatment and biopsies. The treatment was in tablet form to inhibit the mutation from taking over and producing more rogue cancer cells. Unfortunately, the tablets weren’t working and I relapsed. I started a new drug which seemed to be working, and I went into remission again. Every three months I had a biopsy and then had to wait patiently for two weeks for the results. I June, the new tablets started to affect my liver, so I had to stop taking them. My nest biopsy was looming. My daughter and I decided to take a trip to The Lakes to wait out the results. We had an amazing time; long walks, bike rides, boat rides and lots of good food.
A few days after we returned, I got my results; I relapsed. The news wasn’t good, actually it was crushing. My only option was a stem cell transplant. This wasn’t a huge surprise, as this was always going to be the best option for the chance of a ‘cure.’ But, I was hoping it would be years away, not weeks. The good news was that they found a 10/10 donor-a 40 year-old American man. We started the discussions with a new team at a new hospital; our hospital isn’t a centre for transplants. It was daunting being in a new hospital, new staff, different systems. My stem cell transplant was scheduled for the end of August. I had to have another round of chemo before then. This I had at my old hospital, and it really knocked me out. I lost my hair again and was struggling to regain my strength before I had to go in for the conditioning treatment before the transplant.
The next few weeks were brutal. I couldn’t eat or get out of bed. I was only able to see my husband for fear of infection. The chemo and conditioning treatment wipe out your entire immune system, as well as all of your stem cells. This allows the new stem cells to take over. I had my transplant at the end of August. It was pretty uneventful in the end; just like getting a pint of blood. I’ll be forever grateful to my donor and the Anthony Nolan Trust. The trust arranges a courier to go and collect the stem cells and transport them to the hospital. In my case, that was from the USA to the UK-amazing. It makes me cry every time I think about it. Thank you, thank you, thank you.
It is now December and I am + 107 days since my transplant. I’ve had a bit of GVHD, but nothing too bad. I am getting off my anti-rejection drugs now and started on another inhibitor for my annoying Flt 3 mutation. Overall, I am doing well. I am still very tired and can’t do too much yet. I can go out for short walks. My immune system is still non-existent, so I can’t see people in enclosed places. My husband has created an outside lounge in the garage so we can see friends without too much risk. I can see the grandkids outside as long as they are well with no sniffs or sneezes! I have just had a biopsy which has come back negative; I am in remission!
I still have a long way to go-in my case the cancer has a good probability of coming back in the first year, but so far so good. I’m taking it one step at a time. All positive thoughts and prayers gratefully received!