Bernard

‘In 2000 my wife Brenda and I decided to retire early, having run a busy sub Post Office for 26 years. I was 60, enjoyed good health and considered myself to be relatively fit. I had been an amateur football referee for many years and I had then returned to a past pursuit of mine, swimming.  

Shortly after retiring, a lump appeared in one of my testicles. I visited my GP who thought the growth might be a cyst, but referred me to hospital for a CT scan. After the scan, the doctor told me he suspected the lump was testicular cancer.

From this point, I started to keep a diary. This is something I would strongly recommend anyone doing

Bernard

Within 5 days I was in hospital having the tumour removed. The subsequent biopsy revealed I had diffuse large B-cell lymphoma. While they thought the tumour had been completely removed, I had 6 courses of CHOP chemotherapy to kill off any remaining cancer cells.

I had to avoid swimming until after treatment had finished to prevent picking up an infection. For me, this wasn’t good news as swimming had become an obsession and I wanted to keep it up. 

Once the wound from surgery had healed, I started jogging. I ran at a leisurely pace and covered short distances. I tried to run throughout my treatment on days I felt strong enough, but I often had to settle for long walks instead.

I coped well with the first few treatments, but as the sessions wore on, I became weaker and developed some side effects. After about 2 weeks, a dramatic transformation occurred, and I felt much better. That was, until the next treatment 6 days later.

Vincristine, part of my chemotherapy regimen, caused my feet to feel ‘frozen’. It’s a side effect I still have, so I wear bed socks all year round. 

I had other side effects, too, for example tiredness and hair loss. My head was always cold, and my eyes felt as if there were blocks of ice behind them. I had a throat burn, tightness in my chest and a mouth that often tasted like a dustbin. 

My stomach didn’t seem to belong to me anymore. Bowel movements were irregular and caused discomfort, despite taking medication. I felt I’d turned into an old man in 6 months.  

My diary entry at the end of treatment said: “I hope I never go through this again.” But time is a great healer and now it takes reading my diary to recall how difficult those last few weeks of treatment were. 

Once fully recovered, I returned to my weekly swim, cycled quite a bit and volunteered to be an Adviser with the Citizens Advice Bureau. I also became involved in a seniors’ snooker league.

14 years later, in July 2014, I seemed to have a permanent cold and to have lost my sense of smell. By early November. I’d developed focusing problems with my eyes. 

Other symptoms were creeping in. I was feeling generally unwell; I was really fatigued, I had an awful taste in my mouth and found swallowing difficult. I was referred to hospital where I had a further eye check. By then I could barely see out of my right eye and had a constant pain at the back of the eye and down the side of my face. A scan showed a mass lesion in the right intranasal cavity.  

I had an MRI, a biopsy and a PET scan which revealed a tumour the size of a satsuma blocking the flow of blood to my right eye. It was interfering with my vision and causing me pain. Again, I was diagnosed with diffuse large B-cell lymphoma.

I had 3 courses of R-CHOP chemotherapy, although with some restrictions of the drug doxorubicin, which I’d had 14 years before. The chemotherapy was followed by radiotherapy.

Because of the risk of central nervous system involvement, a dose of methotrexate was given to prevent spread to my brain. I was also given a steroid.

I was struggling to breathe as blood clots were developing in my nose and I struggled to sleep. At the same time, limited vision returned to my right eye, although focussing was still a problem.

When chemotherapy started, I immediately felt pain in my stomach and mouth. I lost weight and felt very weak. I also felt really emotional, which lasted a couple of weeks. Gradually things improved and my taste started to return. Tea and coffee still tasted awful, but cold milk seemed to resemble what it used to be. 

My second chemotherapy made me feel very ‘heady’ a lot of the time. By the third, my appetite was poor, I felt weak and my right eye, although it initially improved, was not progressing as I’d hoped.

Starting radiotherapy

A further PET scan showed the tumour had gone, apart from some residue attached to the retina of my right eye. Radiotherapy was recommended. I had a mask made and used it throughout my treatment. Radiotherapy was initially going well, but I still couldn’t smell and my taste had gone completely. My mouth became very dry and tasted like a dustbin despite constant use of a mouthwash. A sore throat made swallowing difficult. The skin under my right eye and on my nose was noticeably red and I suffered pain down my right cheek. Despite these side effects, I continued with my weekly snooker whenever I could, encouraged by the other members of the league.

Once the treatment had finished, my hair started to grow back, but my whiskers only grew on the left side of my face. After a couple of days without shaving, it looked ridiculous!

I got a temporary ‘prism’ attached to the right lens of my distance glasses. This improved focus, and eased the aching behind my right eye. Later, I got a pair incorporating the prism which has improved my vision beyond my wildest dreams.

My walks, swimming and cycling are back in full swing. I’m never going to achieve Olympic standard, but I think I’m doing pretty well for a 77-year-old.

Finally, I cannot stress how much care and attention I have received from my healthcare team together with the love and devotion shown by my wife. They are every one of them, truly heroes.’

June 2016