Andy Roberts
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It wasn't as bad as I thought

Andy Roberts
Posted by
11 Jan 2017

My experiences of undergoing treatment for Non-Hodgkins Lymphoma

I started to notice that something was not quite right when we were on holiday in Australia at the end of 2013.  I used to pride myself on being able to eat as much as I like without putting on weight, but I was noticing my appetite wasn't what it used to be.  I was feeling bloated and could feel something on my stomach - I thought it was a hernia.  So I booked in to see my GP once I returned, and whilst he couldn't detect anything wrong, he suggested I had an ultrasound just in case.  Although the radiographers told me that the results would be with my GP within two weeks, it was a shock to hear a message from him on my answerphone the following day saying I think I need to see you sooner rather than later.  Clearly something was wrong - and I was scared.

It turns out that like many GPs, mine was no expert in Lymphoma.  Unlike others though he had spent a good half hour or so, talking to the heamatology consultant at the local hospital so that he could get a better understanding.  The consultant later told me that she had never come across a GP who took such an interest so that he could have a proper conversation when he saw me later in the day.  Of course based on an ultrasound he was never going to be able to give me a concrete diagnosis without a biopsy, CT scan and bone marrow test (gas and air is great by the way). So began the start of a month of not knowing what my future was likely to bring. Whilst this was worrying, my response was to simply keep myself busy so that I didn't have time to worry.  My GP's advice was to not look up the condition on the internet until my diagnosis.  This was sound advice.

It was actually quite a relief when my consultant told me that I had a low-grade follcular lymphoma.  Low-grade didn't sound very serious, even though I didn't really know what it meant.  She also pointed our that I had a lump in my abdomen about 13x16cm, and that it had probably been growing there for years.  How had I not noticed something the size of a child's rugby ball inside me?  She advised treatment started as soon as possible, although she was happy for us to go away for a week before we started.  She advised that I took time off work and took a break from the cub pack that I was running. The Clinical Specialist Nurse gave me plenty of reading materials to explain what the condition was.

I started RCVP treatment in May.  The first day was a bit like starting a new job, lots of information to take in, and people to meet. At that stage Retuximab had to be delivered very slowly by a drip so the first treatment took a whole day - but that gave me a chance to catch up with a pile of emails and listen to an audio book.  I had my lecture on side effects and neutropenia and was issued with my thermometer, and a bag full of tablets.  I went home feeling dazed, but not particularly unwell. I woke up the next morning feeling fine - no side effects so far, perhaps they come in later. The next day was the same, as was the next.  Clearly the anti-sickness tablets were working.   Despite taking time off work, I managed to stay busy by doing things around the house and I kept my mind of thigs by still responding to work emails. I would even cycle to get my blood tested and spent a large amount of the summer building wardrobes and cupboards. Indeed the side effects were so minor, that by the end of my treatment, I was effectively working 3 days per week from home. Clearly I was very lucky.  Strangely, I didn't lose my hair during the chemotherapy; this waited a year after the completion of treatment 

I guess if there were side effects, there were two.  One was the effect of the steroids on sleep patterns.  I told my GP about this and he insisted on prescribing sleeping pills for the few days I was on steroids  This was a bad idea, as when I stopped taking the pills, I would have horrendous dreams.  The other side effect was a psycological one - almost a fear of picking up an infection and having to spend a week in hospital.  This led to an obsession with handwashing, avoiding anyone who might have had a cough or cold, and counting days since my treatment in an attempt to predict my blood count levels.  I developed a passion for slow-cooked food (rare meat was out of the question now) and restaurant  hygiene lables were carefully observed..

My chemotherapy finished in October, 2014 and we celebrated with a trip to the south of France, and with a large plate of blue cheese (previously banned of course). I started running the weekly local park run and have managed to achieve some quite respectable times (PB 25:50). I have now just completed 2 years worth of retuximab maintanance and am currently now on 'watch and wait' - which in iteslf is quite scary, and it does have the effect of turning you into a hypochondriac - the slightest thing wrong, might be a sign of the lymphoma coming back.  They can't cure my condition, only control it, but I like to be kept busy and there are lots of things I want to achive.  Another period of treatment would not be welcome, but I know it will come at some point.  My only hope is that when it does come back there will be new treatments available and it is as a result of Bloodwise's support for research that I am now an ambassador.

For the whole time, my wife Rachel has been increadibly supportive, not only by giving me moral support, but also by fund fund raising for Bloodwise.  6 months after completing my treatment we both completed the Wales Velothon for the Bloodwise.

So my message for anyone about to start on this journey.  I was lucky, I avoided the worst of the side effects; you may too.   Find something to keep you busy, both mentally and physically and drink lots of water to flush out the nasties.