Richard, 38, hairy cell leukaemia
Are you working?
I’m a “Solutions Architect”, but that tells you nothing about what I do. Essentially I’m a techy nerd working in TV broadcasting designing large systems that make it all work faster, smarter, or cheaper.
How did you find out you had cancer?
I’d lost weight and had been for some time but was to busy to notice. I came to the conclusion that I was to old to put it down to a good metabolism so went to the doctors. They assumed it was a thyroid problem but that it would most likely be treatable. They took some blood and said they would call me in a week or so.
As it happens they called me two days later to tell me I had Leukaemia. I was at work. After taking in the news I then had to call my wife who was also at work and pregnant.
When were you diagnosed and what with?
In 2010 I was diagnosed with Hairy Cell Leukaemia
What did you think/feel when you were diagnosed?
Utter fear and despair.
How did the people around you react?
There were tears, lots of them, but everyone gave us amazing support. The more we learned and understood my specific disease and its treatment, and the more I found others in my position online, the easier the whole thing became to deal with.
What type of treatment did you have?
Chemotherapy for one week. As a jab. it only took 20 minutes a day and that included having a sit down and a cup of tea. Compared to the others in my treatment ward I felt I was getting off extremely lightly.
How did you feel through treatment?
I waited three months for treatment and had to stay away from crowded places. Treatment was pretty short but once I went neutropenic things plummeted pretty quickly. I was in an isolation ward on and off for the best part of 6 weeks. Suffering immense fevers, eating terrible food and having to wash at a basin every day because the logistics of me having a shower on an adjacent shared ward were to much for the hospital to manage each day. The toughest bit was not being at home with my wife in the late stages of pregnancy. I should have been looking after her and instead she was trekking through snow to come and see me each day.
What happened after treatment finished?
Three days after my last exit from the isolation room I became a father.
How did you get involved with Shine?
I saw a tweet about an event that was being run near me and it sounded intriguing. It turned out to be a really great day. Talking to people my age, with similar past experiences and the same concerns for the future. Just going for a drink with a few people from Shine is a really uplifting experience. it lightens the load.
How do you feel now about your experiences?
I wrote a blog and made videos during my treatment. I find it hard to look back at them but when I do it's odd to think I went through all that.
If you could give one piece of advice to yourself before your diagnosis & treatment what would it be? If I could go back and tell myself to do something before diagnosis it would be to sign up for private healthcare. I’d still have had cancer and the treatment would have been the same but at least I’d have had a shower.