Just discovered this blog thing...

Well this is all very new to me, and I'm wondering why no-one has told me about it before! I have found reading other people's blogs very interesting and indeed comforting, and wanted to be able to contribute something myself.

I am currently in week 27 of a 48 week course Interferon/Ribavirin treatment for Hep C. This is no picnic and sometimes the thought of sitting it out in a dark cupboard is quite appealing - until I realise how bored and lonely I would be! The past few months have been hard, I don't feel fit enough to work, I get worn out very easily, and have to take each day as it comes. It is generally pretty difficult to predict and my friends and family continue to be remarkably patient with me not committing to anything until the last minute!

I am working my way through the long list of side effects as the treatment progresses - in some ways it's easier to have the odd new thing crop up, rather than having one constant problem! Over the past few months I have experienced the usual suspects - fatigue, nausea, headaches, dizziness, chills, evening temperatures, difficulty concentrating, hair loss, dry skin, rashes etc. I also have had a problem with haemolytic anaemia (Hb 10.2) since around week 18 - and unfortunately have had to reduce my ribavirin from 4 to 3 tablets a day. I am also iron deficient so have been having to take iron tablets (my stomach is not happy!). I was small to start off with and was worried about weight loss, but with much commitment have managed to keep all but around 1/2 stone of my normal weight.

My Hb has stabilised but I cant increase my dose again without the use of 'Epoetin Alfa' - a hormone routinely used in UK for kidney patients, and in USA to prevent the need for dose reduction and improve quality of life. The NHS trust refuses to pay for this (£140 a week for at least 4 weeks), and neither will they let me pay for it myself unless I become a fully private patient and pay for my whole treatment! Shockingly unethical, indefendable and short sighted. I am currently in communication with the medical director of the trust and will be writing to my mp as soon as I know who it's going to be after this election! I would be really interested to hear if anyone else has experience of this or anything similar - and if anyone has any advice or ideas. Are people even being told about this drug???!!

Anyway, other than that things are OK at the moment! I do lots of things that do help - I am trying to eat iron-rich food - not including animal or fish products - and generally enjoy cakes! I also take multivitamins, high strength vitamins E and C, an iron tonic and a herbal elixir currently being used with radiotherapy patients. I have a homoeopathic remedy that really helps with the dizziness and headaches, and have regular massages - a real joy of my week although sometimes a little hard to come round from. I am very fortunate to not have to worry about work - my employer has been excellent and continues to provide me with half-pay. My family and friends are amazingly supportive, not to mention tolerant of my irritability! After a long dark winter, the weather is improving and I am so enjoying watching my seedlings emerge, the garden grow and the birds come and go. Amazing how much I now appreciate such things...