Kevin

Kevin shares his experience of non-Hodgkin lymphoma and explains how the Lymphoma Action Support Group helped him cope.  

Kevin with his wife

In August 2016, and at the age of 58, I attended a routine male annual MOT check-up at the doctors. 

The blood tests came back normal, but I mentioned that I was having night sweats. Three days later, but still feeling fit as a fiddle, I was in a CT scanner, joking with the nurses. 

The scan revealed that something was looking worrying on my lung, and further tests were needed. I recall going swimming the next day, and instead of my usual 32 lengths, all I could manage was four. Something was clearly not right.

I had a biopsy taken from the lymph node in my neck. The two week wait for the biopsy results was a really worrying time. 

I was diagnosed with stage 4 B-cell non-Hodgkin lymphoma, 80% high grade and 20% low grade. My wife burst into tears and my first thought was that I would never see Liverpool FC win another trophy. 

From that diagnosis I went downhill pretty quickly. I started chemotherapy in October 2016 with six sessions of R-CHOP, 21 days apart. My hair fell out after one session, but worse was to come. The lymphoma affected my spine and my bones were breaking. After five chemotherapy sessions I went downhill fast. I could hardly walk unaided and ended up on walking sticks, then a wheelchair. I couldn’t move an inch without being in agonising pain so, against my wishes, I was talked into going into a hospice. They do fantastic work to relieve pain and the staff were terrific too.

After my final chemotherapy, I had a scan which showed that I was not clear of the lymphoma, so a further two intense chemotherapy sessions were planned. I was scared stiff, but my wonderful wife sat with me through every minute, as she had with the previous six sessions. 

 
The next few months were a blur; scans, blood tests, hospital appointments and also my first Lymphoma Action Support Group meeting. The meeting was fantastic. There were around 20 other people with similar problems and loads of ideas, inspiration, plenty of guest speakers and stories to note. They are held every 8 weeks and I don’t think I have missed one. My wife Ki comes with me - she doesn’t like to miss out!
Kevin

In May 2017 I got the news I had been waiting for. I was clear of the lymphoma for now, and was officially in remission. The chemotherapy was followed by maintenance rituximab injections for 2 years every 8 weeks. 

I returned to work as a finance officer in October 2017. I have been back 2 years now and not had a day off sick. I work for a charity and they have been brilliant and kitted me out with a desk riser and a special chair so I can stand and work.

I have been told by my GP that I will never climb mountains, but I am more than happy and take every day as it comes.

I am now on active monitoring, or watch and wait, like thousands of other people with lymphoma and love it when I see stories of people still on it 10 or 20 years later. I still attend the Lymphoma Action Support Group and hope that I can help others who are facing the same problems as me. 

If, like Kevin, you would like to attend a support group near you, go to lymphoma-action.org.uk/support-groups