Everything started very quickly and we didn’t have time to attend any of the courses offered by Penny Brohn UK so they organised a bespoke package of support for our family. Before having his transplant, Tom went to Penny Brohn UK’s National Centre near Bristol and had a session on meditation with Sarah.
In October 2017 Tom had his transplant. The treatment was a lot more intense and Tom was in isolation at the Transplant Centre of the Bristol Royal Infirmary. He was on the highest level of morphine drip but was still in pain. Tom realised he needed to take control and used the meditation techniques he was taught by Sarah to help him deal with the pain. Whilst in hospital Tom joined a meditation group and was keen to try complementary therapies on offer including shiatsu and head massage.
After the transplant Tom developed acute graft versus host disease which is a reaction to donor cells against host tissue. He deteriorated and had stomach cramps making it very difficult for Tom to eat and he ended up dehydrated. Tom was discharged to the hospital flat where he was responsible for looking after himself including his medication and meals. He found eating very difficult and lost weight. I bought the Penny Brohn UK Nourish cookbook and we went through the recipes together, trying meals that Tom felt he could eat.
John, and I stayed with Tom in the hospital flat and took it in turns to visit the National Centre. It gave us the chance to escape from a medical environment. I had shiatsu to give me some much needed me time and John had counselling at Penny Brohn UK. He found the medical side very difficult and struggled to watch how Tom was suffering from the treatment. We both saw a nutritionist who helped us to find food that Tom could eat and met with one of the Penny Brohn doctors.
Tom was discharged from hospital in January 2018, over 100 days after his transplant. The next six months were tough for Tom physically and he also felt depressed. A year after his transplant Tom was given the all clear. He has started to get his confidence back and life is returning to a ‘new normal’. Tom started an internship in Bristol and became involved with the Creative Youth Network in Bristol where he wrote and gave a performance about his experience.
Tom’s diagnosis and treatment was an incredibly difficult time for our family; full of worry and fear. It put a huge strain on our relationship as a family but Penny Brohn UK helped keep us together and gave us the resources to cope with what was thrown on us.