Tracey

‘Back in 2007 I was diagnosed with hepatitis C and went through 12 months of gruelling treatment. I never really got over the treatment before I started to feel really ill again. I had just given up smoking. It was something I had tried to do before, but this time I managed it. I expected my lungs to feel clearer and was looking forward to being able to do things like swimming. But instead I found I was out of breath and coughing. I gave it several weeks, thinking this was maybe normal for someone who was giving up smoking, but eventually I went to see my doctor. I was put on antibiotics. But then I started to have incredible pain in my chest. When I lay down, it felt like there were rocks in my chest and I had a strange tearing sensation. It started as a cough, but six weeks later I found myself having to focus on each breath. Eventually I had to call an ambulance.

Emergency admission to hospital

A year before, I had a chest X-ray, which was clear. This time one of my lungs was barely visible. I had a tumour in my chest the size of a fist. While the hospital was waiting for the results of my biopsy, I was put on steroids. It was such a relief to be able to breathe again, although my legs then seemed to turn to spaghetti, making it difficult for me to walk. On 3 August 2009 I was diagnosed with stage I primary mediastinal large B-cell lymphoma. I was 42 years old. Talking to the Lymphoma Action buddy saved my life.

Starting treatment

I was to be given eight courses of R-CHOP chemotherapy. I felt ill very soon after the first round of chemotherapy. I didn’t know whether this was normal, but I felt terrible. I was taken back to hospital in an ambulance and they discovered I had a severe infection called ‘neutropenic sepsis’ which had developed because my blood count was low. I felt really weak at the start of the second cycle of chemotherapy and as I looked around at people who were older than me going off for a coffee after their chemotherapy, I thought this meant that my treatment wasn’t working. The effect of the chemotherapy was cumulative and by the third cycle I felt I just couldn’t do it anymore. I was lying on the floor, unable to do anything for myself. I couldn’t string a sentence together. I couldn’t even wash myself.

Calling the helpline

The specialist nurse suggested I get in contact with Lymphoma Action. I called them and found their helpline enormously helpful. It was so reassuring to be able to talk with someone who explained about the many different types of lymphoma and the different treatment strategies.

My buddy

Lymphoma Action suggested that I might benefit from talking with a ‘buddy’ – someone else who has been through a similar experience. In truth, I was at the end of the line. I really felt I couldn’t face any more treatment at all. Lymphoma – especially a rarer type – feels like a very isolating disease and I had not come across anyone with the same type as me. In addition, I needed to care for my son and although my dad was happy to help with practical issues such as looking after my son, shopping and driving me to hospital, he really didn’t know what to say to me. I don’t think I would be here today if I had not had that conversation.

Talking to my buddy saved my life. She had been treated for the same type of lymphoma as I had. She told me that it would not always be like this. She said that at some point I would look back and say ‘I don’t know how I got through this, but I did’. And she knew, because she’d got through it. She never told me to pull myself together, she never told me it would all be OK – and I was grateful for that. But she was there and she had been through this herself. That conversation was a life-saver. 

She wasn’t emotionally connected to me, so I could talk to her openly and honestly, without feeling I needed to protect her or tell her what she would want to hear. I was tired of people telling me it would all be alright.

I put the phone down and decided I would try once again. I now felt empowered to talk to the nurse about my difficulties. I was so ill with the treatment, that the number of courses was reduced to six instead of the eight originally planned. This was followed by radiotherapy, which thankfully was much easier for me to bear.

The charity supported me all the way and I get a great sense of achievement from being able to help others.

Finding a support group

I started attending the Preston and District Lymphoma Action support group. When I first went along I had no hair, and it was just lovely because I didn’t have to explain to anyone why I was bald. I was made so welcome and found the group enormously supportive. I now help run the group with Maureen. When I first started, I worried that I wouldn’t know what to do, how to organise the meetings and which speakers to approach.

What now?

We recently celebrated my son’s 21st birthday. I wanted to make it special for him and it certainly was a night to remember! And I have been back in contact with the buddy who saved my life. She is doing well too and it was great to have a chance to thank her and tell her just what her conversation meant to me.’

We have more information on our buddy service or how you can find your local support group available.   

February 2015