Excerpts from my Treatment Diary

End of week one:

‘Where it feels like the battle has begun. I went to see my friendly Clinical Nurse Specialist, who was pleased to see me smiling during the first week of treatment.

Though, behind that smile is a survivor, it does not mean I’m happy. This is a mask, as if I let people see my real vulnerability I may just crumble into small pieces. My concern was

if I fall apart, how will people handle it? I’ve always been strong so have to be again – don’t I? I realise this is my family moto. So that smile is brightness in what feels like a grey heavy cloud that I am carrying.. All I want is for someone to say to me: “How can we help you to continue to feel positive throughout treatment?”’

End of week two:

“I find myself daily looking in the mirror to make sure there are no signs of the hep C. From the ribavarin I’ve now got a rash on my feet, hands, arms, back, legs, which is also at the corner of my hairline. Now taking some antihistamines and using lotions to take the swelling and itching away. Adding more and more pills one to counteract the other side effects. So much for: ‘A spoon full of sugar helps the medicine go down’. My sex drive is at an all-time low.”

End of week three:

“The ribavarin also has messed about with my haemoglobin levels. This means my energy levels have radically declined, I get short of breath easily and a sort of vertigo feeling. Where it feels like the floor beneath my feet has been pulled away. I now have to inject myself twice a week with epo to raise my red blood cells, improving and avoiding anaemia. My feelings about injecting myself both with the interferon and epo; does not leave me feeling pleasant. In my mind medication that you inject commonly is to make you feel better. This is putting a nasty toxic drug into your body to get well again.”

End of week four:

“Despite the harsh side effects, the virus is now undetectable and I go into 2015 with
the knowledge that I’m undetectable. I still need to complete treatment that even at this early stage I know will be a turbulent journey. Though, I need to hold my faith and be open to the support around me to pull through. I’m just thankful and as my mother said chicken soup helped.”

My belief:

We are each are our own specialist for our body and health. Doctors, counsellors and advocacy advisers are here to facilitate you in a process of keeping yourself healthy. I do not want to attempt to be a specialist of your HIV or hepatitis C. As everyone’s body deals with the viruses in their own individual way. Some people are lucky to have no side effects during treatment. I feel I can only change by taking responsibility and taking charge again of my well-being. For me this has been a big wake- up call and I am grateful as it may have saved my life.