Martin

In 2017, I was 64 and I had taken early retirement. At the time I was working as a Professor at the University of Salford, although I had been a cancer charge nurse before moving into research and teaching. 

That November I noticed that one of my tonsils was enlarged. It was causing me difficulty swallowing so I made an appointment to see my GP.

My nursing background told me that something was wrong, but the nurse I saw didn’t think there was anything for me to worry about. She suggested I go away and come back in two weeks time if things hadn’t improved.

I went back two weeks later and had taken a photo on my phone, which showed up the lump very clearly. I was therefore referred to an ENT (ear, nose and throat) specialist.

I should have pushed to be seen under the ‘two week’ rule( for suspected cancer), but fortunately an appointment did come through a few weeks later.

I was seen in early February 2018 by an ENT surgeon. He explained that he was going to put a scope up my nose and into my throat. This procedure sounded uncomfortable and worried me, but he was excellent and I felt nothing. I was also given an MRI scan. 

When I went back to see him he told me to sit down, which immediately sounded ominous. He explained that I appeared to have a tumour, which was likely to be cancer, but at that time they did not know what type. I was to have a tonsillectomy (removal of the tonsils) as a biopsy. I was a little uncomfortable for a couple of weeks after the surgery and struggled to eat. I lost a stone in weight and seemed to live on ice-cream and rice pudding. 

My wife and I then returned to hear what the biopsy results revealed. I was told I was going to be referred to haematology and the biopsy suggested it was a type of lymphoma. They also said that it would be haematology who would get hold of me to explain what would happen next. To my surprise, soon after that meeting, I received a call on my mobile from a consultant. He explained that I had lymphoma but that they needed to find out what kind. He said I needed to have a PET scan and that he would try and get the results quickly as they were keen to start treatment as soon as possible.

I had the choice of being treated in a local hospital or a major cancer hospital; this was something I thought about as I was waiting for the results of the PET scan. I decided to wait to see if treatment would be straightforward or more complicated, and that would help my decision.

I was diagnosed with diffuse large B-cell lymphoma and I was told that I would follow the European protocol of R-CHOP chemotherapy (rituximab plus cyclophosphamide, doxorubicin (or hydroxydaunorubicin), vincristine (Oncovin®) and prednisolone. It was also explained that diffuse large B-cell lymphoma was a really treatable form of lymphoma.

When I had been nursing, I had spent time nursing people with leukaemia and lymphoma, and I recall the treatment being pretty grim. The main chemotherapy drugs (CHOP) have been around for over 40 years, so initially I didn’t think things had changed so much. What has changed since my nursing days is the treatment and prevention of side effects from R-CHOP which has been transformational. I had been terrified of sickness, but that was managed brilliantly and I experienced no nausea at all.

I took the approach of one day at a time and this worked well for me. I did have one episode of infection but the A&E department dealt with it swiftly once they knew I was in treatment.
 

What really strikes me is how much the treatment of side effects has improved.

Martin

The ’R’ element in R-CHOP is rituximab, a monoclonal antibody. Its addition to the protocol has made an important difference to outcomes. 

The nurse specialists and the rest of the team there were excellent. I knew from my experience as a nurse that health professional staff can be the worst patients, but they took my detailed questions in their stride. 

After three rounds of R-CHOP my clinical team said they wouldn’t do any more. They were confident that the chemotherapy and 15 sessions of local radiotherapy should clear anything up that may be remaining. Unsure about this I checked it out with my nephew who happens to be a lymphoma specialist and he was also sure that this should be enough.

There was one element of the R-CHOP, the vincristine, that I was concerned about because I did not know whether I was fit enough to have it. However.although I was over 65, my exercise test results looked good, so it was agreed that it should not cause me any difficulties. I did get tingling and numbness because of the vincristine, but that has gone now.

I think I already knew that being as fit as possible in the time I had was important, even before diagnosis.

Martin

I think I already knew that being as fit as possible in the time I had was important even before diagnosis. I was already going to the gym as well as cycling.

I realise now how much this may have helped with my recovery. Where this is possible for people, being as fit as possible before treatment is really helpful. I think this is now becoming known as ‘pre-habilitation’ and is something people are more and more encouraged to do.

After a month after R-CHOP I was feeling much better and things had settled down, so I was quite nervous about starting radiotherapy.

The radiotherapy was going to be targeted at my tonsil area, so I needed to have a mask made to ensure it was targeted at the correct place and to keep my head still. It was the first time in my life I had a tattoo, so that they could mark where I needed the treatment. It’s actually only a dot!

They fitted me for a mask and explained how long I would be in it, as many people find it claustrophobic. It was a really weird sensation being clamped to the table by a mask, but it was only for 3 or 4 minutes. In a way it was reassuring that it was safeguarding me and it is over pretty quickly. I also knew I could yell and they could release me swiftly. I decided to do a bit of meditation to get me through it. While in the machine one day I noticed images of star shapes and the nurse explained that was for the children and babies. I then realised it was definitely ‘do-able’.

Radiotherapy made my throat a little bit sore and by 2-3 weeks I could only manage to eat yoghurt or softer foods. I was given Difflam, a green fluid which helped with my mouth issues ,and the whole thing was more manageable. 

Radiotherapy had a cumulative effect on me. I was having difficulty swallowing and everything felt swollen, but I knew I still had 3 or 4 more sessions. By the last session I was finding it quite difficult but I knew it would be worth the effort. 

I had an uncomfortable feeling in my throat for weeks and months and feared it was a recurrence of the tumour. I went back several times, but fortunately it was not returning. Both my CNS and consultant were happy to see me if I was worried about anything, which was enormously reassuring. What we realised was that the surgery and radiotherapy had changed my throat for a while and it took some time to settle. Once it had settled, it felt very different. 

When treatment finished I felt like I was being cut loose. I had developed a nice relationship with the staff and in some ways missed the regular contact. I happen to have another condition treated by my team (an unrelated genetic iron overload disorder) which means that although I would normally have been discharged, I am still seen every four months. Even so, the staff were very clear on what to look out for and not to hesitate if I have any concerns. 

Published in Lymphoma Matters 124, Winter 2022 and published as a web page on 16 November 2022