Posted on Monday 18 May 2020

Jamie’s story – “Liz calls me up once a week and has a chat with me, sees how I’m doing, and helps get my mind off everything for a bit”

Jamie, now 22, was diagnosed with leukaemia when he was 19. After two and a half years of taking tablets to manage his treatment, the cancer developed and he had to have chemotherapy, radiotherapy and a stem cell transplant. The transplant was tough for Jamie, as he experienced harsh side effects and was isolated in a hospital room for three weeks. His CLIC Sargent Social Worker Liz helped him through this time and, still today, helps with the emotional impact going through this experience has had on him.

When I was 19 I had a lump on my stomach which was my spleen that had swollen up. I left it for a month as I thought it may be a hernia, at the same time I was doing landscaping and doing lots of heavy work so I thought it was a muscle having a spasm but it got a bit big and it was my boss at the time who noticed it and told me to go get it checked out.

When I went to the doctors they didn’t know what it was, so sent me for an ultrasound. They found my spleen had swollen, so I went to Brighton hospital for blood tests, got tested for everything – they said to me they didn’t think it was sinister or bad so gave me an appointment for a week later and said if anything happens come back. I drove home, about an hour’s drive and as soon as I got back they called and asked me to go back.

Once they called me, they didn’t tell me until I was there, but I knew it was something bad because they said they wouldn’t call me unless it was something bad. I didn’t go to work for that week as I wasn’t in the right mental state.

For the next two and half years it was treated with pills as it was manageable. Then in June 2019, so nearly a year in, it had evolved into Acute Myeloid Leukaemia Blast Crisis, it was that bad that I literally, at that point, without any treatment, I only had a few months to live. So I had heavy chemotherapy and radiotherapy and stem cell transplant.

There was one chemotherapy I had to stay in for four or five days, it was one chemotherapy that lasted 24 hours, it gave me the worst migraine I’d ever had, they had to blindfold me, it felt like my head was going to explode.

When it started to get really hard for me was when I went in to hospital for my transplant period. I had radiotherapy twice a day for four days, full body radiation, I had this other stuff called Campath but it slowly started to wear me down.

I had a transplant which is a scary experience in itself but after 45 minutes my body had a very bad reaction to it going in, it felt like the whole of my insides were on fire and I couldn’t breathe, I was terrified it felt like I was dying. I had about four nurses around me injecting me with stuff to calm the reaction.

After that I was in one room for about three weeks, you couldn’t leave the room as you have no immune system at that point. I stopped eating. Everything I ate would come back up – I was on shakes three times a day – I got something called mucositis, ulcers went all the way down the back of my throat to my stomach, I couldn’t drink they put me on a morphine pump – I was so weak I couldn’t even hold my phone up. I’d never felt so horrible in my entire life.

I go to the hospital once every two weeks now just for blood tests and all my bloods are looking normal which is good. I don’t like going up anyway as I suffer from a panic attack as it just reminds me of everything and the transplant, I’ve never felt so ill in my life.

I can’t thank my CLIC Sargent social worker Liz enough. She calls me up even nowadays as I’ve been struggling a bit with PTSD and she calls me up around once a week and has a bit of a chat with me, sees how I’m doing get my mind off it a bit, reminds me of the positive steps I’ve taken – she’s constantly helped me with the mental side of it as well.

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