While playing golf, I got the phone call from my friend (who is also my GP and someone who I once worked with) to say that I had leukaemia.
After being used to seeing this sort of thing before, and being told not to worry too much about it, I feel there has been no real emotional impact on myself. I had worked within the medical business all my life, starting out as one of the first Cardiac Paramedics in Brighton and also worked alongside insurance companies within private healthcare. Because of this, I had already heard of leukaemia and had even been involved in the treatment of blood cancer patients myself.
I attended the Royal Sussex County Hospital in Brighton straight away, where they found I had a white blood cell count of 97, and started chemo treatment within the year. I had chemotherapy for 4 months as well as lumbar punctures and then remained clear for 4 years, but with next to no immune system. I now go to the hospital monthly to top up my immune system, using Privigen. I also see the consultant every 4 months, which was originally every 3.
In terms of medication, I started on a trial for tablets which have now been accepted and are an ongoing treatment for myself. I take 140mg of Ibrutinib, 3 times a day. One of the most significant side effects has been gout, something for which I am also medicated for but it can flare up at any time.
I have received unfailing support from the Haematology Dept., at the Royal Sussex County Hospital, the Macmillan’s Nurses & Leukaemia Care, which has helped me to feel better/more positive. More specifically, I attend, when able, Leukaemia Care’s Support Group in Brighton, and enjoys it, except that I do not like to hear people complaining about the state of the NHS and the support they receive, when I can only give them praise when they are working against all odds.
I also started an art course a few years ago with the University of the Third Age, which I find very useful and recommend to anyone in a similar situation. In addition to this, I have continued to do American Square dancing (when foot problem allows), together with a “Sit Down” exercise class once a week. I find that the more things you get involved in (mentally and physically, within your capabilities, of course), the more positive it makes you.
As I was retired at the time of diagnosis, there was no impact on my working life. However, there has been some financial impact on myself (of a purely selfish nature), which is that of trying to obtain a reasonable travel insurance. I own an old motorhome and also have friends who live in Spain, but the financial restrictions mean that I am not able to go abroad now as every price I was offered was over a £1000 for a 2-week period or they declined to cover me. I think that as soon as they hear the word “Cancer”, or anything to do with blood, they are not interested.
To close, I wanted to take the time to specifically thank the consultants and all the staff at the Haematology Dept., at the Royal Sussex County Hospital, for all their kindness and support, together with the staff at his Doctor’s surgery at The Benfield Hub at Portslade. Lastly, the ones most forgotten are the partners and wives, who are there all the time dishing out the tablets etc., and putting up with our moans and groans.
Do you know what the six most common signs and symptoms of leukaemia are? They are:
- Shortness of breath
- Fever or night sweats
- Bruising or bleeding
- Bone/joint pain
- Repeated infections
Are you currently experiencing any of these signs and symptoms? If so, contact your GP and ask for a blood test.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org.uk