Geoff

Back in 2012 I was finishing my three-year training to be a Special Constable in the police force. I was 42 and really looking forward to putting the training into practice.
The three years had involved a lot of exercise, so my fitness was better than it had ever been; I had run the London Marathon and ran about six miles daily.

Our warrant cards were presented at a ceremony, and I look back at photos of that day with very mixed emotions. It was a very proud day for me, but I had been struggling
with back pain and had lost a massive amount of weight. My uniform was literally hanging off me and I looked really sick.

I thought the pain in my back was as a result of a pulled muscle during training. But it got progressively worse. I saw an osteopath and a chiropractor, which I hoped would sort the problem out, but the pain didn’t improve; in fact it was getting much worse.

As a result of the pain, I was struggling to eat and lost 15kg in a short space of time. Looking back, I was also having night sweats but was so worried about the pain, I didn’t take much notice of them.

I went to see my GP, and this was followed by an appointment to have an MRI scan. The MRI scan showed that there was something in my lungs, bowel, bones and pelvis. At the time the consultant said it could be lymphoma, but that I would need further tests and a biopsy. Unfortunately it was very difficult to get to the site of the suspected lymphoma and several attempts over the next two weeks were needed to get the tissue. They finally managed to take a sample through my pelvis, however in doing so damaged my sciatic nerve that has left me with loss of feeling and movement in my left leg.

I was diagnosed with stage 4 T-cell non-Hodgkin lymphoma.

My first reaction was one of fear and I felt really emotional. Cancer is a frightening word, but I took a lot of comfort from reading about advances in medicine and learning more about lymphoma

Geoff

There was also an element of relief to finally get a diagnosis as the back pain I had been experiencing had been so debilitating. I started R-CHOP chemotherapy as soon as the diagnosis was made, which I managed well. Whilst having my chemotherapy, the overriding problem I was experiencing was now the hideous neuropathic pain from
my left leg damage. This in turn became a major distraction to my cancer. After further consultations and neurologists, the decision was made to install a spinal cord stimulator in my spine to block the erroneous pain messages. Of course, to have further invasive operations whilst undergoing chemotherapy added complications, but the pain I was experiencing was so great, the operations were necessary.

My consultant explained that because of the type of lymphoma I had and how widespread it was, I had a high risk of relapse. Because of this, he thought that following the chemotherapy I should have an autologous stem cell transplant (transplant using my own cells).

The transplant was really tough, but I understood the rationale for it. However, within three months I relapsed in my mesenteric area (a fold of membrane that attaches the intestine to the abdominal wall and holds it in place): somewhere it had not been before. This was a huge blow, and I was starting to feel like I was running out of options.
We talked about having an allogeneic stem cell transplant (transplant using donor cells).

I started another chemotherapy regime to reduce the tumour, but I needed to have an emergency operation on my bowel due to the tumour shrinking, causing four quadrant peritonitis, which landed me in intensive care for two weeks. In this time I suffered an intensive care psychosis, the scariest time of my life. This was to leave me with PTSD (post-traumatic stress disorder) in later life. I was getting worse all the time and they had to stop the chemotherapy until my wounds had healed.

Eventually a donor was found for me, and a year to the day from the date of my autologous stem cell transplant, I started my allogeneic stem cell transplant (using donor cells). The transplant was tough, and in many ways I believe it was even tougher because I had a weakened body. My energy levels were non-existent and I got infections
left, right and centre. I remember getting up and going to the toilet and my blood pressure fell so low that I just dropped to the floor. I can still recall the sound of me dropping to the floor and cracking my head on the toilet; I also vaguely recall someone picking me up. 

My partner Paula, who is now my wife, was fantastic throughout everything I was going through. Having that support was so valuable during such a challenging time.

I remember the seven weeks of hospital food and just being in the same room, although I was fortunate that it was very comfortable. My wife has told me how she would come in to see me, but for 3 or 4 days I didn’t even acknowledge she was there. I also remember the side effects of being on steroids and having no hair or eyebrows. When I looked in the mirror I simply didn’t recognise myself.

I had terrible mouth ulcers and struggled to manage my personal hygiene. I felt embarrassed, but realised I had to let that go and quickly appreciated that there was nothing unusual about me compared with others.

Coming home from hospital was quite bewildering. I felt like I was being cut loose and that feeling made me nervous.

Geoff

Paula felt even more nervous than I did. As I gradually connected with people again, I realised that life had gone on without me. People had changed jobs, moved house, and I’m not sure I felt like the same person I did before. Everything had changed so much.

I had so many mixed emotions; I was happy to be home but had bouts of anger because I felt this had all been unfair. I then started to resent my home and began to feel a bit like a prisoner there.

My old job had gone after 23 years and it was agreed that I should take on a less demanding role. This was quite a blow. In addition, having just been awarded my warrant card, I was forced to retire on health grounds. I felt I had nothing left, although looking back now the training was so rewarding that I wouldn’t have missed it.

I needed to have support with how I was feeling. I was diagnosed with post traumatic stress disorder (PTSD) and Eye Movement Desensitization and Reprocessing (EDMR) therapy was arranged for me. EDMR treats emotional symptoms that follow traumas, such as PTSD, depression, anxiety and panic attacks. It has really worked for me and I am enormously grateful for the way it has helped me cope with my feelings.

I often thought about the person who donated their stem cells for me. After two years you can ask to be put in contact with your donor and I was very keen to meet mine. He was half my age, and at University when he was recruited on the donor register by Anthony Nolan. What surprised me was that he had kept asking his friends and family if he had been good enough. He had no idea of the enormity of the journey I had been on before the allogeneic stem cell transplant, or the gift he had given me.

I think of this experience as having been like being placed in a snow globe. I have been shaken up and the pieces have gone all over the place, but mostly the pieces have settled back to a new normal. It’s now over ten years since my allogeneic stem cell transplant and I feel like I am a different person. I can honestly say I have a lovely life now. 

Sadly my mother died recently and she wanted donations in her memory to go to Lymphoma Action in recognition of the tremendous support they have given all my family over the last ten years. This was a great gift from her, a legacy if you like.