Q Can you give any hints on how to get through treatment?
RM There are so many things! I will try to list them:
having a support network
* eating a liver-friendly diet
* being open to change and being prepared to make things different
* using complementary therapies reiki, aromatherapy
* having counselling therapy
* taking exercise like yoga (tai chi and chi qong are also useful)
* trying to identify sources of stress and avoid them
* not giving myself a hard time if I dont do things well, etc
* recognising the positive or good news in each situation
These things helped me before I went on treatment too so I would recommend them regardless of where you are on the treatment issue!
On bad days? I stomp around or sulk a lot. And take 2 paracetomol as it usually hurts on bad days. I also sit around and vegetate for hours!!
Q. How has blogging your treatment helped you during the 48 weeks? Would you recommend others keeping a web log or diary?
Are there things you should leave off of a web log or public-facing site?
RM Thanks for the interesting question!! I think it has helped give me a bit of a focus and routine keeping the blog - as well as a useful place to express or explore my experiences! I would recommend it as a useful thing to do. From experience I won't mention or talk about information about '3rd parties' on my blog without some reference or permission to them first! For anyone else who's reading this and is interested in creating a blog for their treatment, here are a couple of tips:
* Blogging can be anonymous - you don't need to use your real name if you don't want to.
* There are a number of free services that will run your blog for you such, as Blogger (which is run by Google). Typepad is also very good, but it costs a few dollars a month. The urls are http://www.blogger.com and http://www.typepad.com
* Blogging can help you establish a support network of other bloggers receiving treatment.
Q I've been following your web log for a couple of months now. Thank you so much for providing so much insight into your experience with treatment for Hepatitis C. In your last few posts you seem to be dealing with what you call "riba-rage". What is this exactly?
RM Glad to hear you read the blog - and glad you find it useful!! Don't know where the term riba-rage comes from (probably the US?!!) It refers to the irritable feelings which are a known side-effect of the combination drugs. It's a chemically induced irritation which isn't easy to control - some people have more problems with it than others! I sometimes just think it is an excuse for grumpy behavior!!
Q Just curious to hear about your expectations for after your treatment ends.
RM I am optimistic I will clear the virus but not necessarily be free of it!! I have changed a lot since I was diagnosed - being HepC+ has changed my life and so I will never be the same again! I have learned a lot and dont wish to turn the clock back now. I also know I will need to continue to have checks at regular intervals.
Q If I can ask you to wear your professional hat for a minute (Gamekeeper turning poacher?), what are your views on counselling as part of HCV treatment? Is it useful? Should it be part of standard NHS treatment?
RM I found being in counselling myself was a key part of preparation for treatment and for coming to terms with my diagnosis. I needed to be able to share just how frightened I was of this virus and how frightened I was I would die from it. Exploring these issues in depth, amongst others, helped me to let those feelings go (or at least not become overwhelmed by them!) and I have more room in my mind to get on with the everyday business of treatment.
As a counselling therapist myself, I am becoming convinced it is a necessary service to make available for people with hep C. Think about the amount of anger that people with hep C experience! It cannot be good for us to have to cope with all this on top of drugs whose side-effects are irritability without some support and counselling!!
I do believe it should be an integral part of every hepatology Hep C centre in every hospital in the UK!!
Anyone who's met me or read my blog knows my views on this one. Totally agree with you Ron. I think the lack of professional psychological support verges on criminal neglect in some areas. I have sat with my consultant and been told about instances of suicide while on treatment - I also found a site detailing some instances. Very morbid, but highlights the appalling state of mental health support for many - not just hep C sufferers - in this country
Q. Have been on treatment for just a week but have had a rough time this weekend, no sleep and feeling depressed and pretty hopeless. The thing is I live alone so no-one to get 'grumpy' with but this hasn't stopped me working myself into an agitated state over trivial things- not quite rage but pretty close. Thanks for the blog Ron its been very informative
RM You have made a start!! Some say that's the tough part.
Have you thought of keeping a journal - or even a blog as a way to work through the agitation or 'grumps' about things? This could be useful as you are on your own. I think it is really important also if you live on your own to identify and build your support networks to help you through the rough patches in treatment
Q I have considered keeping a journal and I may start today, had my second injection last night and not feeling too bad, today just a bit 'achey'. I recognise that its important to have support during treatment but Im a very private person and have never disclosed my condition to anyone other than health workers, so I find sites like this invaluable.
RM Have you thought of keeping an anonymous web blog as Ben has suggested I know several bloggers who do this!
Hope you recover from the achy feelings today - I can identify with that. I assume your hospital have suggested paracetomol for those aches.
Ok decision made.. web log starts tonight..
I feel pretty good today, some mild aches but moving around seems to ease these. My nurse told me to use paracetomol to help this but one thing is different from last week, since Friday Ive been drinking a litre of water a day, I had been told that this could help with sides so hopefully it is having an effect.
Q. I have had hep c 23 years. I have been offered treatment, I have geno type 1a. Has anyone ever cleared the virus with this genotype?RM There are many people with your genotype who are successfully treated on the combination therapy. I too have 1A so the treatment is 48 weeks - the long haul.
If it helps, I believe that type 1b has a lesser success rate from treatment than 1a. According to a specialist I saw recently, success from 1a is about 50%, while from 1b it is closer to 35%.
I have genotype 1 - but no idea whether a or b. My doctors didn't know either.
RM Thanks for the information and statistics - that is helpful. Hope you are feeling well!
Q. Are there any new treatments out there for Hepatitis C? Where are the best places to go for information about new treatments?Where do you personally go to look for new information on Hep C? Do you have a favorite site that you could recommend? RM The internet has got to be a useful source of new information but I have to confess I dont rely on any one site I check a number!! Its very hard to say, depending on the information I am looking for. A search engine search on Hepatitis C, hep C, HCV all bring interesting responses!! I also rely on my hospital team too as well as other people living with hep C (we all become very knowledgeable about our disease and I continually learn from my peers). And I utilise helplines such as the one run by The Hepatitis C Trust; their telephone number is 0870 200 1200.
Q One last question and I'll leave you in peace! Are there any new treatments out there for Hepatitis C? Where are the best places to go for information about new treatments?RM Happy to answer all your questions!! I dont think there are any new medical treatments in the pipeline at the moment I know because I waited to start treatment in the hope there would be!! I understand nothing new is on the horizon for another 5 years or so. However, the existing drugs such as interferon and ribavirin are being improved by the manufacturers and I am sure they will continue to tweak these. In case you are wondering I do not personally believe that complementary therapies ALONE can clear this virus but I know they can be really useful supplements to the combination therapy and enhance the experience of treatment.
Q. I am to be offered treatment for 6 months, after that they should be able to see if it is going to work. Are the side affects really as bad as people say? Really puts me off!
The treatment is probably 48 weeks but the hospital will test your blood after 12 weeks to see what effect the meds are having they probably mean that if the therapy is effective they will continue on the treatment to conclusion.
The treatment affects everyone differently you can see from my blog how I am managing to live with it! I would say people do find it do-able - once you are able to get past that list of side-effects the hospitals are obliged to tell you about!!
Q. Both of us are involved with the national awareness campaign, and are quite open about our condition. I am aware though that others use online forums such as this to protect anonymity. How do you feel it has helped to be open about your Hep C? Do you feel that the Face It campaign is achieving the things which you would like it to? How would you like to see the campaign move forward in order to minimize or stop altogether some of the many medical and personal issues which are reported by sufferers?
RM Being open or out as I call it is an interesting issue!
Not everyone is in a position to be open some people worry for their children or their place in a freelance work market and I can respect that. However, I have found that people respond very supportively to the news I am hep C+ and I have gained great comfort from that. I think most people would agree the Awareness campaign could be more high profile but I feel optimistic that it will grow and be useful for people who have not yet been diagnosed. I think there are other issues for people who have been diagnosed in getting better services and these need to be taken on too!
I am told that The Hepatitis C Trust and hepCaction are actively involved in lobbying on behalf of this latter group
Totally agree, Ron - though I do sometimes feel like 'The only HCV+ in the village'. My experiences have been similar in terms of the positive response. The most important thing to me has been sharing experiences - I thought I was distinctly strange until I started reading the blogs and talking openly with others. It's been very reassuring - I think it must be difficult to cope in 'splendid isolation', not least because information from health professionals seems to be limited - would you agree that better education of professionals would be a massive help and significantly improve the lot of many HCV+ people?
Q. Do you know offhand how many patient groups there are active in the UK for Hepatitis C patients?
RM There are Patient Associations through Mainliners (The UK Assembly on Hepatitis C) and the Hepatitis C Trust (info on this can find elsewhere on this website). These are the main ones I can think of just now. If you mean support groups ... that's a different issue!
Offhand, no idea - apart from the ones I have tracked down on line - very few and far between. I asked at my hospital, but they knew of nothing in my local area (Derby). When I saw a specialist at Nottingham, he said there was one there but had no contact details. Personally, I'd love to get one started - once treatment is properly underway (my blog has the full history of my lack of treatment!). It is something which I believe is very limited and fails to get the necessary support from health professionals
