Robin, Non-hodgkin Burkitt's lymphoma.
December 2014 with Non-hodgkin Burkitt’s lymphoma
What did you think/feel when you were diagnosed?
I had a biopsy after being admitted to A&E (I’d had a few scans and tests by this point and there was nothing conclusive). I had been sent home after a week in hospital, and a couple of days later was called back into hospital by a consultant who told me that I would be starting treatment as soon as I’d read and signed the forms.
How did the people around you react?
I was careful with how I explained the diagnosis to people. I tried to be positive and upbeat about the prognosis and although most people were worried, they generally tried to put on a ‘brave face.’
What treatment did you have?
High-dose chemotherapy. “R-CODOX-M/IVAC-R” is the technical name for the treatment which started on 22nd December 2014, and my final dose of chemo was on 5th May 2015.
How did you feel through treatment?
Generally pretty rubbish – the best way to describe how I felt was like a massive hangover without the fun. Some days were better than others, as after each phase of treatment, I had a few days to recover (e.g. 6 days on, 6 days off). But due to the dose, I had bleeding and blisters throughout my gut, bleeding gums, headache, dizziness, disorientation, dry itchy skin, pins and needles, numbness, weakness and breathlessness along with a number of other side effects. I also had to spend the first part of treatment eating liquid foods so I lost a lot of weight (and I had the worst Christmas dinner of my life – in an isolation ward). Generally, I took each day at a time, and the symptoms didn’t come all at once. Looking back, it was a lot easier to get through than it sounds and the hospital staff were pretty well able to manage my symptoms with painkillers and an array of symptom busting drugs.
I spent a couple of months recovering and started to ease back into ‘normal life’. In fact, ease is probably an under-statement as in July/August, I went on 3 stag weekends, 2 weddings and Glastonbury. In hindsight, I did push myself a little, and my immune system took a little longer than it should have to recover (in fact my first ‘normal’ blood result was on 5th Jan 2016). I’m now having 3-monthly check ups which will continue for 5 years.
How did you get involved with Shine?
During treatment, I started looking at charities to see if I could help out/meet similar people. At a Macmillan conference, I met a Shine member who recommended I get in touch. I was invited by Ceinwen after e-mailing for more information.
What difference has Shine made to you?
Due to the intensity of treatment, and the protective bubble I created for myself I felt a little isolated in terms of dealing with what I went through. Meeting like-minded people has helped me to realise that I’m not alone and that there are people out there that I can talk to. I have also realised that it’s important to talk – something that I’m historically not that good at doing when it comes to dealing with my personal feelings.
How do you feel now about your experiences?
I spent a lot of time during treatment trying to get back to normal and did too much too soon to try and get over it. I’m now starting to realize that I’ve come out the other side in a new normality. Life is about change, but this kind of hurdle really does change one’s perspectives. I’m re-prioritising my work-life balance along with my personal goals. I think this is a continual process that I’m still working on.
If you could give one piece of advice to yourself before your diagnosis what would it be?Be honest with people and yourself and just concentrate on recovering. The people that matter can already see through the protective shell.