Surving non-Hodgkin's lymphoma

I was diagnosed with HIV in July 1997, aged 36 and was told I would not need HIV treatment for some years and that I had a very low risk of developing a major illness. How wrong that was.

For three years, life continued pretty much as before.

However, when shaving one morning, I noticed a pea-sized lump just below my left ear. Concerned, I arranged an urgent appointment at my local GUM clinic to have it checked out. The medical team weren’t sure what it was so decided to ‘stick a needle into it and find out’. My naivety proved a bonus, as I’d no idea this meant ‘take a biopsy’. Had that term actually been used, I would have been very stressed but as it was, I wasn’t worried at all.  

I had attended on the Thursday and was told to telephone for results the following Monday. I phoned three times and I was given lame excuses why I couldn’t speak to my consultant. I started to feel that I was being avoided. But I was phoned at 7.30am the next day and told that I needed to come in immediately.

Within minutes of arriving at the hospital my head was already reeling from information overload, and none of it was easy listening. 

My ‘pea’ was a tumour – a cancer called non-Hodgkin’s lymphoma. It was malignant and I needed chemotherapy.

I was told that mine was the first case of non-Hodgkin’s lymphoma to be diagnosed in Northern Ireland in someone already diagnosed with HIV, so the clinic wasn’t sure on how best to proceed. They had to turn to experts in London for advice and even resorted to the internet.

They wanted to admit me immediately for a week of tests, followed by chemotherapy starting the following week. I managed to persuade them to allow me time to make some practical arrangements first – the care of my dog, my house – and assured them I’d arrive back later that day. I gave the impression of being in total control. I certainly wasn’t.

I just couldn’t get my act together. Unable to drive, I sat in the car for an hour then walked in the hospital grounds with tears running down my face for another twenty minutes. My life had been turned completely on its head, and there was absolutely nothing I could do about it. I nevertheless had a real sense that time was of the essence.

I made myself drive home, packed a small case, contacted my family (they didn’t then and still don’t know I have HIV), and after a brief chat with my neighbour (I didn’t give too many details) I’d arranged for a dog-minder.

I knew my cancer would be a complete shocker for them all. Now it was time for me to show some strength and give the appearance of someone much more together than the fearful person I actually was.

By lunchtime I was wearing pyjamas in a hospital bed waiting for my first MRI scan to ascertain the extent of my cancer, and which form of chemotherapy would be the most effective. The next three days involved tests, tests and more tests. Of course it crossed my mind I might actually be on my way out, and if this was the prognosis, then I needed to know. But there was just no way I was going to let this damn thing beat me.

I was to receive my chemotherapy in a variety of different ways. One day it was tablets, the next by injections, then 24 hours receiving chemotherapy intravenously via a drip. Then I had to have a lumbar puncture. This involved inserting a long needle into the base of my spine so samples of spinal fluid could be taken and also so chemotherapy drugs could be injected. I ended up having to have a shunt inserted into my head – and I was awake for the operation to insert this. The shunt is still in my head to this day.

Within a few weeks of my chemotherapy treatment starting, my hair completely fell out. This was a shocking experience, but I knew that it would grow back.

My chemotherapy lasted for five months. I had a break of a day between treatment cycles. This was intensive, but it didn’t occur to me to take longer breaks because I knew the treatment was so important.

I also started HIV treatment to boost my immune system and give the chemotherapy a better chance of fighting the cancer. It was a lot to cope with, and even though I didn’t have any obvious side-effects, there was a psychological impact. It really made me realise that I had HIV – and I had cancer. What a double whammy.

This all may sound like some sort of horror story and it would be wrong to deny how gruelling the treatment was at times.

That said, the chemotherapy ended; I got stronger, the fatigue issues subsided and a year after treatment ended, my cancer was in remission. However, as with all cancers they can never say I have been cured, only that they can no longer find trace of it.

After I reached the remission stage, I was reviewed regularly, and this will continue for ten years. Initially these reviews were every three months, then six-monthly and more recently they’ve become annual. Thankfully, over eight years since my treatment for non-Hodgkin’s lymphoma, all my tests have been clear. But the night before my check-up is always one of worry and apprehension.

Yes, this was a traumatic period of time, and yes, the chemotherapy was unpleasant at times.  But there have been positive outcomes.

Once my treatment ended, and I knew I was getting home, I had this awesome feeling of relief and survival. It was the realisation that I could have “bowed out” but hadn’t. I had a real sense of the brevity and preciousness of life

Surviving cancer was a time for new beginnings. I knew the man who had gone into hospital all those months before no longer existed, and was ready to change a lot of unsatisfactory things in his life.

Strangely, I feel my life has benefited from this new outlook. I now feel in control of life more, a much stronger person, independent and know my own mind. I was not like this before the cancer. It’s like I have grown-up all over again. 

I am fitter and leaner than I have ever been: I went into hospital 13 stone and with a 34” waist, and six months later, I left weighing 11 stone and with a 30” waist. This has remained the constant.

My cancer treatment caused some changes to my body – for example I’ve more body hair than I used to have. My hair was brown and curly before my chemotherapy – when it grew back it was grey and straight.

It is now 2009. Almost nine years have passed since my cancer diagnosis and treatment. I’m very grateful for the treatment and care I received.

Since this part of my life unfolded, I’ve been able to help other people with cancer, both as a listener and by discussing my own experiences.

My zest for life is back with a vengeance.

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Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.