Colin

In December 2017 I was 49 and a full-time volunteer supporting asylum seekers and refugees, helping at a food bank, running a community garden and trying to set up a local, community-led nature reserve. Life was busy and I felt fortunate never to have had a major illness.

Just before Christmas 2017, I started to have a funny feeling in my head. It wasn’t a headache, more a tightness. Although it worried me at the time, it went away. I decided to see my GP after it happened a couple more times and my doctor thought it could be something as simple as ear wax. A few days later, however, the dizziness came back and my face looked swollen. 

I went back to the GP surgery and saw another doctor who thought it could be labyrinthitis (an inner ear infection that affects your balance) and was prescribed some medication. Things didn’t improve and one Sunday I felt so ill my wife called an ambulance. In A&E they did tests on my heart and carried out a chest X-ray, all of which seemed to indicate that nothing was wrong. 

Four days later I passed out on the landing at home. My wife called 111 and they called an ambulance, despite it being in a middle of a blizzard. In A&E the medical team picked up a note in my file from a radiologist who had reviewed my X-ray asking that a CT scan be done.  Over the next three days I had tests, a biopsy and more scans.  

I was diagnosed with primary mediastinal large B-cell lymphoma (PMBCL) and was told I had a growth the size of a large lemon in my chest which was growing really fast.  

I started chemotherapy with one dose of R-CHOP, followed by six doses of DA-R-EPOCH. This is a similar regimen to R-CHOP but includes etoposide, which they thought would help with the fast- growing nature of my lymphoma. Because I was relatively young and fit, they felt I would be able to tolerate the more aggressive chemotherapy, and DA-R-EPOCH is one where the dose can be adjusted, meaning they could increase my dose if I was tolerating it. It has to be given via a Hickman® line which meant I had to be in hospital as an in-patient for five days in every cycle. 

Between the first and second dose of chemotherapy I started to feel disconnected from my body and nothing felt real at all. I could barely talk properly and was unable to form words. I certainly couldn’t put a sentence together. I felt like I was shrinking and that I would disappear. 

My medical team referred me to a psychiatrist, as they were fairly sure that what I was experiencing was psychological. They explained that it was a form of disassociation as a result of a dramatic change in my life. I was suddenly facing a life-threating illness, which involved being an in-patient for at least five days every month, I had to stop work and could not see people because of the risk of infection. All these things were causing me an enormous amount of stress.

I had regular sessions with my psychologist and tried several types of complementary therapy, like acupuncture and aromatherapy.

Colin

I had regular sessions with my psychologist and we tried several types of complementary therapy, like acupuncture and aromatherapy. I don’t know how well these worked for me, but I gradually managed to cope and changed my mindset. I had to put my trust in my medical team, and believed what the doctors told me.

I had a lot of side effects from the chemotherapy, which I had been warned about. I had a big head of curly hair and a big beard, but I was told I would lose it. The day before my first chemo, my wife came in with her clippers and cut my hair really short. What I hadn’t expected was for ALL my hair to fall out; I don’t think a single hair remained on my body. No one tells you how uncomfortable it is without nose hair, and I often had a sore nose as a result. I also struggled with mouth ulcers, which are miserable and with nausea, which was managed with medication taken shortly before I was due to eat. I became neutropenic and, in the last two cycles, got a serious infection in my Hickman® line, which took a while to control. 

Another side effect I experienced, which I wasn’t expecting, was cramps in almost every muscle imaginable, including my face and neck and my jaw when I yawned. I also experienced what felt like cramp in the intercostal muscles between my ribs. 

A scan at the end of treatment showed I was in remission, which was what we were hoping for. This was fantastic news and a real relief. 

I had been told that once the chemotherapy was finished, I would go on to have radiotherapy as a ‘mop up’ exercise. This worried me, as I was concerned about long term side effects of radiotherapy, but I have a friend who works as a radiographer who reassured me.

I had 15 fractions of radiotherapy, Monday to Friday for three weeks.  At the time, I felt this was fairly straightforward compared with the chemotherapy, but I have developed an underactive thyroid, which I am told is most likely a result of the radiotherapy. I am on thyroxin, which manages this.

It’s taken me a while to start feeling like I’m ‘firing on all cylinders’ but mentally my perspective on life changed.  I feel I have to live life to the full. Not in a hedonistic way, but trying to live to the best of my ability.

I feel I have to live life to the full. Not in a hedonistic way, but trying to live to the best of my ability.

Colin

I was encouraged to apply for Personal Independence Payment (PIP) as I was unable to work for quite a while. I left it a bit too long to apply, as I now realise I could have applied much sooner. You have to present a lot of information about what you can and cannot do. I found it helpful to write in my diary a summary of these things on a daily basis. I got help from my specialist nurse which was extremely useful and I would recommend to people they talk about this as soon as possible. I did get PIP, and in fact it continued for a while after I finished treatment. 

It is over three years since the end of all my treatment and I have now been discharged from the hospital, having no sign of recurrence of the lymphoma. I am working and life is looking really promising. It is hard to imagine that almost four years ago I wasn’t sure if I would even see the year out.