My Stem Cell transplant journey
I was diagnosed in December 2020 at the age of 38 with a rare form of AML called Myloid Sarcoma. This Is a tumor that grows off bones which contain myloid leukemia cells. Fortunately for me, the cancer cells haven't reached my bone marrow or blood like someone with typical AML. Mine, as already explained, were found in the tumor biopsy and it turns out its in my DNA of the cells found on the minimal residue disease test.
Anyways, had chemo until June 2021, went into remission....AMAZING! Until it showed its ugly face again in February 2022 😒
Was told the only curative treatment would be a stem cell transplant. So, April 2022, I started FLAG-IDA chemo regime to get me back in remission, which it did, however, my bloods took 4 months to recover enough to have my stem cell transplant.
So, my stem cell transplant began on 29th August 2022 and I was very thankful that my older sister was a 100% match. She lives in Spain, so had to come over for a few weeks for the process.
My stem cells went in on 7th September with my sister and mum present 🥰
All I can say is, it is THE most hardest and toughest thing I have ever ever experienced. I opted for the extra trial chemo, which caused me to get the worst mucositis mouth infection the doctors have ever seen. I had scabs in my mouth, throat and couldn't eat or drink. They offered a feeding tube but I refused and had I.V food instead (it goes into veins).
I unfortunately got so poorly, I had 3 infections at the same time and ended up with sepsis. My heart rate went to 242 bpm and they had to stop my heart twice to try and get it back to a normal rythm but unfortunately, it didn't work , so I was taken to Intensive care which was where I stayed for 8 days. It was touch and go, but with the wonderful care I recieved, I got through it. I spent just under 8 weeks in hospital and came home on my daughters 16th birthday which was lovely.
To top it all off, my father in law was diagnosed with terminal lung cancer whilst I was in hospital. He was given 8 weeks to live, and died 1 week later. I didn't even get to say bye and missed his funeral....utterly devastated!!!
Its nearly 4 months since I came out of hospital and I struggle daily, mentally and physically. I can hardly eat, some food tastes off and makes me gag as soon as I taste it. I don't even fancy eating half the time, even though my stomach is obviously empty as I can feel it. The eating side of it is really stressful, I was a big eater and loved my food before and I now get really really stressed when it comes to eating.
I am having to up my calories with the calorie shakes every day to try and maintain my weight. Lost 3 stone so far and still losing the odd pound here and there.
I struggle with aches and pains, can't walk a great deal as my back and hips are so sore the following day.
It is the longest road to recovery and me being me, I'm very impatient and hate sitting around and "resting' like I have been advised to do so by numerous doctors, nurses, friends and family members. That's where it affects my mental health. I just want to feel like me again!
My advice to anyone going through a transplant is to try and be patient (unlike me), listen to your body and always make sure you tell your consultant everything you are concerned about, it really does help put your mind at rest because every little thing will make you worry that its come back etc.
All I want to do is eat a big fat burger, have a few cocktails, and go out dancing 🥳