When were you diagnosed and what with?
I was diagnosed with Stage 4B Follicular Lymphoma in April 2015
How did you find out you had cancer?
Well……..mid-2013 I had a motorcycle accident that resulted in some quite serious injuries requiring a long hospital stay and an even longer recovery period at home before I could return to work. Not long afterwards, I began to experience small changes in my body which by themselves would be of little concern, but together – turned out otherwise.
By mid-2014, I had reported my symptoms to a GP at my local practice. These were: unimaginable sweating both day and night, hot flushes, exhaustion/lethargy and swollen lymph nodes. There were other “warning signs” like the frequency with which I would fall foul of the latest virus/infection doing the rounds, but I wasn’t aware of the connection.
The GP spent 3 months confused by my symptoms, testing me for seemingly random viruses and was at one point aggressively convinced it was HIV and that either I or my wife were lying to her or lying to each other (it was neither!). On reading me the negative results, I was sent for an ultrasound at my local hospital (St George’s, Tooting). The report described my nodes as “unremarkable”, however my health continued to track downward with viruses and infections until March 2015, when they finally considered the possibility it might be something more serious and referred me to my local haemato-oncology clinic for a consultation.
I was accompanied by my wife for my first appointment and saw a registrar who asked me some questions/physically examined me. He refused to let me leave without doing all the tests he required and proceeded to frog march me through the hospital to each department and got me pushed to the front of the queue for each test
The NHS however wasn’t so great at confirming any information or booking tests (I had a number of procedures privately) and I was only able to confirm my diagnosis on the day of my first chemotherapy treatment
What did you think and feel when you were diagnosed?
I was alone to collect the results a week later, not expecting the kind of news I was delivered. There was an unnerving 1 hour delay as they frantically looked for my but once I was in his office, I was quite directly told I had lymphoma.
I was shocked obviously, but my initial reaction was to launch quite aggressively into “information gathering” in an effort to understand what it all meant. It isn’t an appointment I’ll ever forget and I can remember looking him straight in the face and demanding to know what type it was, which stage it was at, what that means for treatment and/or life expectancy.
I left after setting a date for some further tests. I hurried through the hospital, suddenly feeling claustrophobic, breathing quickly and trying to not freak out.
I was just reaching the edge of the hospital grounds when I managed to persuade my fingers to hit the mobile screen in the right place to call my wife at work and deliver the news. Before I could even get the words out I burst into tears and had to repeat myself a few times before she understood what I was trying to say.
How did the people around you react?
My wife has seen me through tough times and her strength enabled me to get through yet another life changing event.
My family, close friends and my boss were the only people I told and this resulted in lots of tears and similar questions to the ones I’d asked. Some people took a big step back (including some family members) whereas others (often unexpectedly) offered – and sometimes thrust! - their help upon me.
What treatment did you have?
I had 6 treatments of R-CHOP on 3 week cycles and I am currently under a 2 monthly maintenance cycle due to end in December 2017.
How did you feel through treatment?
The first cycle was the hardest, mainly psychologically. The doctors give you lots of information, most of which is about side-effects and you find yourself uncharacteristically precious about every tiny change in your being (a twinge here, an ache there) based on the information you’re given – but once I got through the first cycle (hopefully infection free!) I relaxed a little and settled into a new routine.
Within days of the first treatment I began to feel better! It was miraculous!! I experienced significant nausea throughout (some vomiting in later cycles) and there were days where I was about as energetic as a slug, but otherwise just tried to get on with life. I made sure I went out every day (usually to the supermarket to buy lunch) and I took up yoga once a week. I spent a lot of the time outside enjoying the sunshine and fresh air, even some swimming in a friend’s private pool.
I found Buderim uncrystallised ginger and Trebor soft mints were pretty decent for taking the edge off the nausea.
What happened after treatment finished?
I had to wait a few weeks after the last cycle to have a scan and I was given the news that I had achieved a good partial remission (I am unable to achieve full remission given the late stage before intervention). A few weeks after that, I decided to go back to work part-time and work my way back into “normal life”. A few months later I realised, there’s no going back and normal is whatever you make of it!
How did you get involved with Shine?
I met Shine at the 2016 National Lymphoma Conference in Nottingham. Ceinwen and Emma held a workshop for people in their 20s-40s. I felt like they understood the pressures younger people face post-diagnosis/treatment
What difference has Shine made to you?
Shine is giving me the opportunity to connect with others in similar situations to mine and live life!
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
The biggest change I have faced is the lack of energy. I find it hard to accept that I am unable to do as much as I used to. Some days I regretfully do too much and have to suffer the consequences of a few days of bed rest!
In some ways, I feel the same way as I did on the day that I was told – I want rid of the lymphoma and to get on with life! Since then, my wife and I have renovated our flat ourselves, bought a house and started the long and no doubt emotional rollercoaster that is IVF treatment.
There’s no reason it should stop you living.
If you could give one piece of advice to yourself before your what would it be?
I think if I were able to advise myself as succinctly as possible it would be:
• Your body isn’t as fragile as you imagine
• Try to stay as relaxed as possible, stressing and worrying isn’t going to make it any easier.