Personal experience

Life beyond lymphoma
Mark looks back on his diagnosis of diffuse large B-cell lymphoma, treatment and coming to terms with life after treatment.
I look back on 2024 as one of the toughest years of my life. I was 64 and in February, a sore throat which turned into an abnormal growth inside my throat, resulted in a referral to see a consultant. It was suspected that the lump in my throat was a tumour, so I needed an operation to remove it, and it would then be biopsied.
I was referred to haematology and before the operation I was given a PET scan. An operation removed the lump, along with my tonsils, and then came the agonising wait.
I was diagnosed with diffuse large B-cell lymphoma, stage 4, which had spread to my lungs, liver and spleen.
It was explained that it was a type of blood cancer, and that it would be treated with the aim of cure. Everything that was being said to me kept spinning around in my head. The consultant was speaking, but I felt like I was in another place, trying to process the reality of the situation.
“ I left that appointment in a state of shock. I never thought cancer would happen to me, but it was now at the forefront of my life.
It’s like I’d entered another world with everything still going on around me, but which seemed uncertain.
I had to have a number of tests to make sure I could take the intense chemotherapy they were considering. I was determined that if the tests provedI was up for it, then I could do it!.
My treatment was to be six sessions of Pola-R-CHP. This is a treatment regimen made up of polatuzumab vedotin (a targeted therapy drug that delivers a chemotherapy drug to damage B-cells), rituximab (a targeted therapy drug that triggers the body’s immune system to target and destroy B-cells), cyclophosphamide and doxorubicin (chemotherapy drugs) and prednisolone (a steroid). The daily immunotherapy injections had to be administered at home for five consecutive days.
The first time I went into the hospital day unit was daunting, but I would say to anyone, ‘just go with the flow’. Before, I felt like I was the only one going through this, but as I went in for treatment, I quickly realised I was not.
Mentally, I got into treatment mode each time I went in for my six-hour session (most people were not in for as long as me). I left rather gingerly, feeling slightly drunk, and a bit heady. I soon realised that the full impact would come later once I was at home.
Over the next 14 days I went through nausea, metallic taste, loss of appetite, headaches and shivers that felt like flu. After about a week I wondered if I was going to get through this, but I did.
For me, one of the major challenges was keeping weight on. Treatment really put me off most types of food, so I ate anything I could stomach, which strangely was food with a strong taste. The other thing that was crucial for me was to avoid picking up any germs. I did this by being very vigilant, almost like I was back in COVID times. It was important to me to be ready for the next treatment and I certainly didn’t want to miss any.
I got into a pattern; treatment, feeling really unwell, improving, having blood tests followed by an appointment with my consultant to confirm I was well enough to have the next treatment.
On treatment day, I took the opportunity to talk to the nurse about my treatment and sometimes had some questions in mind that I wanted to ask. I took a book to write down my thoughts and made lists of things I wanted to do once treatment had finished. I also took an uplifting book to read, which was OK for an hour or so, but then my focus tended to decrease with the chemotherapy. I then listened to podcasts which were great at taking my mind off the drugs going through my body.
By the third course of treatment, and halfway through, I thought I had this sorted, and the PET scan backed this up. I thought treatments five and six would be a piece of cake, but it was at this point I needed to dig deep as I was a lot weaker both physically and mentally by this time and it seemed like an age before I would be heading for my last treatment.
“ Towards the end of treatment five and feeling ill from chemo I did get to a point where I thought privately, ‘I can’t take this anymore’. But something changed overnight and I found a new gear.
I remember walking out of the hospital after treatment six feeling that I had done it and wondering what the next stage would be. I now needed to start to recover a little, rest and regain strength. In my mind there wasn’t complete peace, as I still needed to wait some weeks for another PET scan to confirm whether the treatment had worked. There is so much resting on it, and it felt my life was on hold until I knew.
The news I received was something I didn’t expect. ‘The scan shows you have no sign of cancer. You are now in remission and need no further treatment.’ I walked out of that appointment not shouting from the nearest roof top, but feeling proud. Now was the moment I had been waiting for for a long time – to ring that bell!
This is where the impact of everything I had been through started. My body still had the signs of what I had been through: my finger nails were very brittle, my indigestion system erratic and I felt tired. My muscles were weakened, my strength taken and emotionally I was in shock.
I was questioning what does my life hold next? I struggled with a sense of belonging: what will things be like now? And there were days when I felt down.
I focussed on building up my fitness, taking it slowly. I found walking and home exercises like weights to strengthen my muscles all help as well as seeing people and talking. Physically the side effects are gradually improving, although I still feel anxious quite often.
I feel a sense of loss or bereavement for the person I used to be. I’m coming to terms with the new me and really want to live life to the full.
Are you struggling to come to terms with life after treatment? Connecting with others who understand may help:
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