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It all started with a small scratch on the top of my foot from swimming in an open water lake. The scratch quickly turned into cellulitis, as unbeknown to me my immune system was compromised and only the antibiotics from daily visits to hospital were actually doing anything. I had also been feeling fatigued, but put it down to age and work.
The cellulitis took a week to come under control, but almost as soon as I had stopped taking the antibiotics, the cellulitis returned and this time it needed an operation to drain the fluid from my foot and an abscess that had developed in the original wound.
All the time I was in hospital, the blood tests they did were all still showing low white, red and platelet counts, so I was discharged and told to have follow up blood tests. I was then booked for a CT scan, which showed an enlarged spleen, and then had a procedure to extract and analyse some of my bone marrow. This bone marrow test was the final piece of the jigsaw which showed I had some abnormal white cells, and after several weeks, I was finally diagnosed with hairy cell leukaemia (HCL).
I had to wait until my foot wound had healed enough before the chemotherapy could start as the doctors didn’t want this to flare up again, which was a real possibility with a compromised immune system.
The treatment was a one-off five-day course of chemotherapy administered via two daily injections into the stomach. The injections were quite quick and painless; first day was the worst not knowing what to expect and it was a long wait for the medication to be available. I was also given a “party bag” of preventative medications to try and stop me getting any infections.
There are lots of possible side effects of the chemo and I was lucky enough not to experience any of them, although I had an allergic reaction to one of the antibiotics. This left me with a red rash from top to toe and an elevated temperature. Due to the high temperature, after taking chemo drugs the advice is to go straight to A&E in case of potential infection, so I had a long day back in hospital. I was eventually allowed to go home, and had a change to one of the preventative antibiotics.
As of today, I am two weeks post-chemo treatment. I have weekly blood tests to check if my blood counts are going to improve and another bone marrow procedure in six months’ time.
My advice to others is don’t panic. Take some time to read the advice and support literature on www.leukaemiacare.org.uk. Join a support group – you will soon realise you are not alone and there are many other people out there in the same situation that can offer help and advice, and people that have been through treatment and survived.