Adam

Coping with ‘chemo brain’ after treatment for Hodgkin lymphoma was the hardest part. This story also includes a video of Adam talking about his experience of this side effect, with expert comment about cancer-related cognitive disorder or 'chemo brain'

Adam in New York

‘I was working on a cruise ship and we were about half way through a 25-day cruise of Canada and New England.

I woke up one morning with a really tight feeling in my neck and when I prodded my neck I felt a lump. I thought maybe I’d been drinking too much caffeine as I was working such long hours. But as the ship had a doctor on board I thought I would go and have it checked out.

The doctor X-rayed my chest and told me that he could see something that looked like a mass, just under my heart. This really panicked me because I hadn’t for a moment thought it could be anything serious. I couldn’t understand how a lump in my neck could be connected to this mass in my chest. He explained that it was compression on my main artery from my heart as the tumour was so large, it was pushing and into my neck.

Hospital and far from home

The doctor said I needed to have it investigated at a hospital immediately. We were in Halifax, Nova Scotia -  I couldn’t have been much further from home. I explained that I was happy to stay on board and carry on back to England, but I was told it was imperative I was seen straight-away. At the age of 27, I really didn’t think it could be anything serious; I suppose I was being a bit naïve.

I had several tests in Nova Scotia during the course of a week and they monitored me closely to see if my condition got worse. They carried out a needle biopsy and I had to stay in hospital for a week, but the results were inconclusive. They did tell me, though, that they suspected this was Hodgkin lymphoma. I had never even heard of this disease before.  

Back home and more tests

I was flown home and on the same day I arrived back in England my GP referred me to hospital. A second needle biopsy was carried out, but once again the results were inconclusive. I was then referred to another hospital to have a lymph node biopsy which was far more invasive and I was put under local anaesthetic.

Within a week I was diagnosed with Hodgkin lymphoma, stage IIIA and told that they planned to start treatment immediately.

Chemotherapy and radiotherapy

I started treatment in November 2013 with 12 sessions of ABVD chemotherapy over a 6 month period. A scan part-way through showed there was still evidence of the lymphoma, so it was decided that I would have radiotherapy as well.

Although I had been warned I would lose my hair, luckily it just thinned, making it look wispy. It was losing my eyebrows that I found most upsetting. It seemed to change my looks completely and I thought it made me look really ill.  Also, because of the steroids I was on, and because I wasn’t taking much exercise, I put on 2 stone in weight.  My face in particular was much rounder.

After the chemotherapy had finished I had radiotherapy every weekday for 3 weeks.  For me, this was the easiest part of treatment, although I felt more and more tired as the time went on and I had some soreness and redness where the radiotherapy was targeted.

After treatment

In June 2014 I finished treatment. Instead of being delighted to finish treatment, it was at this stage that I began to feel angry, asking  ‘Why me?’ I also felt like I was being left behind. Only a few months earlier I had been travelling around the world without a care, seeing  amazing things. But the lymphoma meant I had to leave all that behind.

 
Instead of being delighted to finish treatment, it was at this stage that I began to feel angry, asking 'Why me?'
Adam

 

For me the worst part of having lymphoma has been the side effect I am still experiencing. I find I can no longer concentrate or focus on things, something the doctor has told me is known as ‘chemo brain’. It is difficult to explain to people how it feels, but I’ll try. I’m sure others who have it will recognise and understand what I’m talking about.

How ‘chemo brain’ is affecting me

One of the things I notice is that I don’t feel completely engaged with things. For example, I may be sitting down having a meal and, although I am physically there, I feel like an outsider looking in. I don’t feel I can take everything in, but feel instead as if I’m looking out through a tunnel. I suppose I feel like I can see things, but not feel things.

I also find that I cannot find the right words any more, which makes stringing a sentence together challenging. In fact, I often find part-way through a sentence that I can’t recall what I had started talking about.

I am also struggling with fatigue, and when I feel tired I get more confused and things seem to be even more foggy than usual. I have read a lot that suggests that exercise helps enormously with fatigue and I have found that getting out, walking and doing some light work has made the fatigue better. But I also find that being outside the house makes the ‘chemo brain’ situation even scarier – I feel even more disorientated. When I’m in a room, I have the safety of knowing where I am, but outside everything seems to be flashing by and I find I can’t take it all in. I also find my spatial awareness is very different and I can’t gauge how far objects are away from me.

These difficulties have led to me having anxiety. I never expected to feel depressed or anxious, but after months of feeling so insecure and ‘foggy’ I suppose I shouldn’t be too surprised. I spoke to my GP about all these difficulties and about my feelings. He suggested I rest when I need to and that I should try to introduce regular light exercise into my routine as this will help with the fatigue and the chemo brain. He also gave me some anti-depressants and these have really helped.

Light at the end of the tunnel

Now 5 months after the treatment has finished, I am finding that the ‘chemo brain’ is starting to get better and that the anxiety is lessening. I think I read somewhere that it tends to improve over a 6-12 month period.    

Friends and family have found it hard to understand the side effects I am struggling with. I think they feel that I should be feeling positive and moving forward, while I am still finding it hard just to get back to anything like normal.

I now have a part-time job which is helping me to gain back some structure and some confidence too.  It’s hard, but I push myself every day to do as much as I can. Everyday tasks which for most people would seem easy are an uphill struggle. But I can feel that I am getting mentally stronger every day and doing things and getting out there is the best way for me to build my confidence. I am not 100% by any means and getting back in to work has been a daunting prospect, but I need it in order  to push forward. It’s important  for me not to rush myself or let anybody push me harder than I feel I can handle.

My aim is to return to working on board cruise ships again, but I know I have some way to go before I am fit enough to go back to my old life. So for now I take each day at a time and try not to look too far ahead.’

Adam’s experience on video with expert comments

Adam’s video includes comments from Dr Oana Lindner, Research Associate in the Institute of Cancer Sciences at the University of Manchester.