Dear Ron
I recently received this email from someone, whom I will call Jane although this is not her real name.
Dear Ron,
My husband is 3 wks into treatment and it has made him so ill. He has genotype 1a and we were both really naive about the side effects of this treatment. I followed your blog before and after treatment and found you an inspiration and genuine in what you wrote. I thought because you went to work that my husband would be fine. Since the 1st injection he has been unable to work, usual fever and aches 48 hours after injection but just really bad nausea, diarrhea, stomach pains, sweats and just weak as a kitten. I’m hoping that this is just the body getting used to treatment and I know first month is the worst. I will do everything to get him through this but I stupidly surfed the internet and came across an American on you tube ranting about interferon and the effects that never leave the body after treatment, which the doctors don’t want us to know. I am absolutely terrified now and think what have we started. Do you feel the benefits of being free
from the disease yet, the more I search on the internet the more weirdoes I come across. Due to stigma of this disease we only have each other to talk to and thankfully my husband is computer illiterate so doesn’t see all the crap that’s on the web. I don’t know if you will get this mail but if you do I would appreciate a reply to the question of post treatment.kind regards
Jane
Dear Jane
Thank you for your comments about my blog. I’m glad it has been of some information and help. When I wrote it I had hoped this would be the case.
I think that all of us when we start this treatment are naïve. We don’t really know what the experience is going to be like. And the treatment is so different for all of us. It depends on so many things – age, gender, the state of your liver, your previous health and current fitness – and even your state of mind I believe.
Jane, I did work on the treatment, but only part time. I know of people who have worked full time throughout and others who couldn’t work at all while they were on these meds.
I also know of people who have had very few side-effects from the treatment meds and many who suffered a great list of symptoms continually.
The long and short of it is – it is so different for all of us. It really cannot be predicted how any of us will experience this treatment.
Jane I’m sorry to hear about his symptoms. It can’t be easy to watch. However, none of what you describe is unusual. You don’t say where your husband is doing the treatment but I am guessing it is in the UK. So he will be attending a clinic with regular checkups on his progress. No doubt the clinicians will keep particular contact near the beginning to see how he is doing. You can discuss his experiences with them and hopefully you will find that contact and their response to his symptoms reassuring.
However I know it can be difficult for you both and make you wonder what you have started. It is important that both of you remember that decision to confront and challenge this virus. Keep strong. It does take bravery to go through this and determination. As I said earlier, I believe your state of mind is important during this treatment. Yours and his too. I believe it is important to stay positive and keep believing that the outcome will be a good one.
Somewhere near the beginning of my blog I wrote about making a commitment to getting rid of the HepC virus – and doing whatever it took to achieve this. Devoting my life to it. Determined to give it my total focus. Dealing with whatever came up as part of the journey. I had Bell’s Palsy at one stage and had to sleep with my eyes taped shut which I found particularly terrifying for some reason. I just knew coping with this was part of what I had to do to get there.
Jane you can go on the internet and find all kinds of things. You can always find someone who will take totally opposite views on things – and have arguments that prove that point of view. There are some scary and horrible sites out there. I remember there was one which was meant to be a tribute to a dear departed partner – complete with funereal music and eulogies. Great – just what I needed when I was starting to research HepC. However that person meant well but totally unaware of what it said to others like me.
Best advice I can give – find sites you can trust and stay with them. There some listed on the right side of this blog page. Organisations specializing in liver disease (Liver Trust, Hepatitis C Trust – and some of the ones I list in my last blog post like nhsUnlocked) should prove helpful.
And check out whether there are any local support groups for you. Your husband’s clinic or clinic nurse should have information for you about any groups near you.
Post treatment? Well four years since the successful completion of the 48 weeks treatment for 1a, I certainly don’t feel like a patient anymore or someone whose life is taken up with Hepatitis C. I occasionally get liver pain – which doctors say you can’t have ☺ and I haven’t bothered this past year even to have an annual post treatment check up as I don’t believe the Hepatitis C has returned.
Lastly, I hope you will be able to recognize that, as a partner, you too are going through this treatment. I know I greatly relied on my partner Carol and perhaps did not acknowledge frequently enough in my blog how important she was to me getting through that journey. It is hard for carers and you need support too. So those queries about support groups apply to you too. And any other social networks you can find where you can support about your experiences.
Keep strong and believe in the outcome you are looking for.
Wishing you, and of course your husband, well
Ron