Peter lives with his wife Mary in Stockport and has three children and four grandchildren. He was diagnosed with the blood disorder hypoplastic myelodysplasia and had a bone marrow transplant in 2012.
Peter had no symptoms of illness before his diagnosis and had a busy job, working for a barrister. Since then he’s lived with and overcome the post-transplant challenges of infection, fatigue, and feeling down.
Here, Peter tells us about his recovery and how he regained a positive outlook.
‘When I first read about what a transplant involved, the potential side effects and risks were very difficult to take in, especially as I had been feeling so fit and healthy beforehand. But I decided that I still wanted to go ahead with it as it offered the best chance of a cure for me.
The month of isolation really got to me. I did have visitors, but it was really just my wife and close family. I had a TV and DVD player in my room and the European football tournament was going on at the time, but I just couldn’t concentrate. My concentration only lasted about a minute.
I found it very, very hard. But I just had to cope with it really. Another hard thing was coming home – I’ve always really taken pride in my appearance and been smartly dressed, but I had lost so much weight that when I put on my old trousers they just fell down!
Recovery is a slow process I suffered from two serious post-transplant infections which really knocked me back. Everybody said, ‘You look so well!’ but my energy and fitness levels were very low.
I used to be so active – my wife Mary and I used to walk out to the local pubs and restaurants. After my transplant, I could hardly walk to the gate and someone had to help me get into the car. I spoke to my consultant, a really nice fellow, he said ‘motivation!’ but, to be honest, I could have packed up. But the consultant kept saying, “Just be positive – motivation!”.’
‘With encouragement from the medical team, Mary and I decided we’d get more active. We decided to start walking up and down the drive, then to the end of the road, and then 25 yards to the park. We started visiting local shops and coffee bars – they became the new pubs!
Mary was with me the whole time and she and my nurse practitioner really helped to motivate me. Talking to people really helped The biggest surprise for me was that talking to people really helped. I don’t normally sit around talking and I had never had therapy in my life – I thought it was all ‘huggy-huggy’ and not really a typical bloke thing to do!
But I wasn’t coming out of myself at all and Mary and my nurse were really encouraging. When I arrived at the cancer care group, it was mostly women there and I still wasn’t sure that it was for me.
But they had volunteers to get people talking and soon enough I couldn’t help but join in. They served lunch with a glass of wine – very civilised! I had counselling and different types of therapy and it was really relaxing. I went to group sessions and also one-to-one counselling.
I heard from people who had much greater troubles than me. The guy next to me was an Irishman with lung cancer. He said, “I’ve got a matter of weeks now. I’ve had my goodbye party!” He’d always played music and so he had his farewell do with music. It was heart-wrenching but everyone was really positive.
Just being able to talk about my experiences was great because we all had a lot in common. The beauty of the place was that it seemed to bring out the best in people and it made me feel much more positive.
When I was recovering from pneumonia, I was in and out of hospital all the time. I was feeling particularly down one day when I received a letter from my donor. It gave me a real boost and was just so uplifting. I hope that I’ll get to meet him one day.
I now help others and talk to people who are about to go through transplant. I try to be honest so that they can prepare for what will happen and the challenges ahead. Having a transplant is very hard and it will change your life forever. But I always tell them, “You can get through it.”’
Peter did meet his donor, a 27 year old man called David, saying ‘it was wonderful to be able to meet him in person and to hear more about his experience of donating’. Read more here.
If you’ve had an experience you’d like to share or have faced similar challenges to Peter please do get in touch with us, we’re here for you. Just email firstname.lastname@example.org.
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