 | | I was diagnosed with non A non B hepatitis, around the time it was identified as Hepatitis C in 1991, when I was 24. I had no idea what it meant and I am pretty sure my doctor at the time didn’t either. I feel as if I have grown up with Hepatitis C. I have known for most of my adult life,and in a way it made me a little too comfortable with it for too long. |
Saskia Whitfield - P/T Administrator
I kept regular appointments over the years at the hospital and gradually as more became known, the expressions on the doctors’ faces became more serious. There was talk of treatment and I started to worry. I used to pride myself on making few concessions to having Hep C and I thought the more I ignored it the more it would leave me alone. Actually I made no concessions at all, except one, no spirits. Hardly the model patient. I had few symptoms except a nagging headache-like pain in my right side that was diagnosed as a muscle strain.
In 2003 I gave birth to my daughter and my outlook on it changed. No one can go through watching their 3 month old child screaming their way through a blood test that you feel totally responsible for without thinking it may be time for action. I was extremely lucky in my daughter being clear of the virus but from that moment on the thing I had ignored for so long was no longer my problem alone.
I decided to start treatment two years ago. I had been offered it before and I am still grateful and amazed that in this country such an expensive treatment is so readily available. The support and availability of help at the hospital may sometimes be limited, but gosh it’s free, and they really did the best they can.
Up until then I hadn’t known my genotype. Because I knew nothing about it, I wrongly assumed having had few symptoms and having remained relatively unscathed for so long that I would have the ‘easy’ gentoype 2 or 3. I was very upset to find out I had genotype 4 and would be doing treatment with interferon and ribavirin for eleven months, and that the outcome would be more uncertain.
I was so intent on treatment having no impact on me and my daughter’s life that I steamed ahead with everything as normal until at 6 months I ran out of energy and developed anaemia, hyper-thyroidism and neutropenia. Given my time again I would definitely pace myself better and accept that while treatment is hard work and it is better to continue normal life, some allowances must be made.
I finished treatment last year (2007) and it did not work for me. I am still accepting that and it was devastating news. It was a long, hard year and as a parent there were times when I felt it was not just hard on me, but hard on my daughter who was very young at the time.
Given all that, I can also say that doing treatment was the most serious thing that I had ever had to do and I gained a lot of pride and self respect in facing up to it and taking it on. It was a huge personal achievement. I was lucky too, that I had friends and family who were fantastically supportive.
I also found out about the Trust during my treatment, I spent hours on the Trust’s website, and watched Gemma’s documentary of her treatment. All of this was unbelievably helpful to me. I did not know a single woman that had it too. I needed a lot of information and other people’s experiences to keep me going. When my treatment had finished I offered to help out and now I am extremely proud to do whatever I can here.
Of course I am still a patient too, looking forward to the new treatments becoming available and the Trust is a wonderful source of support and information. I never called the helpline during my treatment, I was too proud. How I regret that now! If I only I had known!
