In 2001 I was diagnosed with HIV (human immunodeficiency virus). Although things have changed a lot since then, it appeared in my case I was classified as a ‘slow progressor’. As a result, I was simply monitored routinely to check that my T-cells didn’t drop too low and didn’t start treatment.
Nowadays antiretroviral therapy (ART; drugs that keep HIV under control) would be started straight away, but I didn’t actually start them until 2013.
Although the HIV diagnosis was a shock, I managed to get on with my life, and in my mind I sort of ‘parked it’. In fact, over many years I was fairly healthy, with no opportunistic infections and one brief spell in hospital, and I felt I had been enormously lucky. I continued with a normal life, even living and working abroad for a while.
In 2018, when I was 58, I suddenly had a sharp pain under my arm and found a lump. I went to my GP, which led to many tests and in August 2018 I was diagnosed with primary effusion lymphoma stage 4. This is a very rare and aggressive form of non-Hodgkin lymphoma.
What I hadn’t realised, or perhaps had been told and hadn’t absorbed, was that people with HIV long-term are more likely to develop cancer. When I received the initial news about the rarity and aggressive nature of my form of non-Hodgkin lymphoma, I was really shocked.
With my cancer diagnosis, I was advised against searching the internet about my condition. I simply couldn’t avoid doing so, but what I found was bleak and doom-laden and often out of date. At times I found this overwhelming, and initially at least, it hindered my hopes for getting better with treatment, despite constant reassurance from my doctors.
If I had read that some people were, in fact, doing well several years later, it would have filled me with far more optimism. I would have realised that one day things could be better again.
As I have HIV, my treatment was shared between my HIV treating team and my oncologist. For me, this shared care approach worked really well, and I felt it helped me achieve the optimum results from the treatment.
Between August and December 2018, I received six courses of EPOCH chemotherapy (etoposide, vincristine, doxorubicin, cyclophosphamide and prednisone) which was very debilitating. Going through intensive chemotherapy is not great for your immune system, and with HIV it meant I was even more vulnerable to infections, and had to be extremely careful.
I faced many of the common side effects such as constipation, huge fatigue and uncomfortable peripheral neuropathy. My Hickman® line got infected and I clearly recall one awful night when things seemed very dark indeed, and I was briefly on standby to go into intensive care. As I came through that, I gradually felt I had turned a corner and began to think of life after cancer, away from the constantly beeping chemotherapy drips.
Two PET scans showed that after chemotherapy there was a tiny area of concern, but my treating team were eventually satisfied that I was in clinical remission. I felt a huge sense of relief.
Ironically, just as I finished treatment, I was told my mother was very ill with cancer and had only weeks to live. She lived in Ireland and although going on a plane with a compromised immune system was not ideal, I needed to see her.
I am just so glad I was able to be with her and share the news of my recovery with her before she passed away. We were very close and I think it gave her great comfort. For me, it was worth the risk.
I have regular examinations. My clinical team are satisfied that my immune system is strong for someone living long term with HIV, and blood tests and examinations show no sign that the lymphoma has returned, which is great news. In truth, I don’t feel like I have recovered my full strength, and get a lot of fatigue, but I am very grateful to be as well as I am today.
I worry about people in a similar situation to me, facing two complicated conditions. Although my doctors were reassuring, I would have found it helpful to read about others who have gone through a similar experience. Hopefully my story will help them realise there is room for hope and optimism and that the internet, while often a help in modern life, can lead you into bleak and dark places that don’t always reflect the whole story. That is why it's essential to turn to quality and factual websites like Lymphoma Action.
My husband and I made a decision not to go back to our old lives after my lymphoma treatment. Perhaps not a ‘career break’, but more a ‘cancer break’. We both wanted to adjust our lives to make them less complicated. We were used to living in busy cities with demanding jobs and now yearned for the countryside and a simpler approach – perhaps abroad in France. Who knows?
Wherever I end up, it would be no small satisfaction if I knew that somewhere, somebody reading this and starting the same journey could draw some comfort and reassurance from my experience.
If that is you, I do wish you all the best, for in my case I remain eternally grateful to the health professionals whose help, support and determination to work for the best outcome made such a difference.
Photo: Image by Brin Weins from Pixabay