Living Without HepC

Email from Ben who is speaking at a social media event SXSW Interactive currently being held in Austin Texas

On 14 Mar 2009, at 18:23, Ben Metcalfe wrote:

This link is being referenced a lot here at SxSW, and I thought a lot of the observations were similar to your experiences with the HepC forum.

http://www.kuro5hin.org/story/2009/3/12/33338/3000

Great to see you twittering, by the way!

Lots of love,
B

Hiya Ben

This article don’t say much – and takes a wordy length of time to do it – in a pseudo academic sort of way. He’s right about Shirky. Complete ass and self promoted expert. His inept grasp of Bion’s unconscious behaviours in groups made me laugh. And the man is paid to pontificate about it all.

I can see my approach is completely on the wrong track.

Reminder to self:
use more words to say it
quote as many other sites on the net as possible
inform everyone what an expert I really am

Thanks for the heads-up on the article. Will probably blog on it when I digest all the long words and big sentences. You’re right – it does remind me alot about my experiences with The Hepatitis C Forum.

I keep twittering and avoiding asking myself “why?” but inevitably it will occur to me to do so.

Lots of love
d
xx

Follow my Twitter at http://twitter.com/ronmetcalfe

Wow – and today I have learned even more about this film and why I don’t really like it very much.

I have just watched the whole film made by Jonathan Gems on HepC – whose preview I referred to in yesterday’s comments. Although the film makes many apt and accurate points about the state of our government’s response to HepC, overall I found it a negative and alarmist piece of work.

It is true the UK government’s response to Hepatitis C has been slow, short on direction and woefully inadequate on planning. It is likely that that the Department of Health doesn’t want to face the possibility that Hepatitis C is a costly and wide-spread epidemic. I wouldn’t disagree with Mr Gem’s analysis on that front. Hepatitis C is a horrible disease that needs to be taken seriously not swept under the carpet.

I would disagree with his judgement on using the cinematic technique of bombarding the DoH with letters. As none of the replies to his letters could be filmed for legal reasons the whole thing bordered on just haranguing. And I ended up thinking that was his style on the whole issue of Hepatitis C really.

It is apparent that Mr Gems has had a series of very unpleasant experiences with Hepatitis C. I am guessing all of us who have had it would say the same. And, yes, there is a value in sharing one’s experience – however, Mr Gems forgets to tell his viewers that it is only his experience not the general rule.

He spoke of having a liver biopsy, for example. My experience of having a liver biopsy was not pleasant but very different than his – and at the same hospital I might add. I’m uncomfortable he has left viewers with the impression it is so brutal it causes “out of body” shock, so painful it requires more than paracetamol and evokes indifference from staff who left him to suffer for 6 hours. Actually patients are told in advance they will be kept for 6 hours under observation for complications. The needle I had was not particularly painful and I wasn’t left to suffer. I was checked regularly by nursing staff who gave me plenty of sympathy and paracetamol for my pains. As I’ve said, not a pleasant experience but I think Mr Gem’s tale will clearly frighten someone off what can be a necessary and useful procedure in assessing the state of one’s health.

He is also contradictory in telling his own story. At one point he says he told a doctor he didn’t know how he got HepC, then later rather factually wrote he got it through gum surgery in 1980’s.

Time and again Mr Gem’s own experiences are generalised to represent the situation for everyone with Hepatitis C.

I feel very strongly that if any of us decides to publicly help educate others about this virus – particularly others who also have it, that we have a responsibility to present a fair representation of the situation. Not just our gripes about the way we see things. “No research being carried out on HepC”. “No palliative care for HepC”. “HepC causes brain haemorrhages” (that robbed us of Anita Roddick). By the time it is diagnosed HepC has caused “organ damage – including brain damage”. I don’t believe these statements are factually true but I will acknowledge that is only my view or belief. Mr Gems presents all these as facts. For the general public and newly diagnosed to absorb and worry over. As if Hepc isn’t frightening enough without giving it a further negative spin.

It is an interesting perspective to state that those most likely to get infected by Hepatitis C are surgeons, dentists, paramedics, nurses and doctors (and later in the film, firefighters and manicurists are added to the list). However to say that any health professionals who test positive are automatically fired, so therefore they keep quiet and hence the disease spreads is a somewhat distorted logic. And it is not factually true that medical staff are fired from their jobs. Through my experience of this blog I have been in contact with dozens of medical and clinical staff who retain their careers despite their HepC status. Yes, they no longer work in vulnerable roles but they still work.

Yesterday I said I learned a few new things about Hepatitis C. Yes, that’s true. I didn’t know it was so different from Hepatitis A & B. I didn’t know it is a nanovirus. I also didn’t know that 38 million people in China carry the disease. So this film can add something to people’s knowledge about the disease.

However, I am struck how much personal anger drives the energy and perspective on display here. And drives the very demanding absolute solution that there should be mandatory testing of the whole nation now before it’s too late.

There are other issues I could comment on here but no doubt you are becoming as weary of hearing about this film as I am writing about it. One question I was left with though – why does Dr Oliver Thatcher not have a shirt on as he outlines the news about the various hepatitis’ ?

Wow – I have learned several things I didn’t know about Hepatitis C just watching this 5 minute preview of a film by Jonathan Gems.

Watch Me Hep C and the NHS by Jonathan Gems in Pink Onion Films  |  View More Free Videos Online at Veoh.com

There’s a full length version of this film at the Pink Onion Films channel on Veoh.com. You will need to download their Veoh Web Player to see the full length versions.

When I have finished the download and viewed this and another film by Paul Desmond I will comment further.

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

Been surfing some HepC and patient sites today – checking what’s happening on the web. What kind of sites are in the running for giving people with HepC the opportunities to learn and share?

I was emailed this week by Matt Jameson Evans from nhsUnlocked to say they had linked to this blog so I wanted to check out their site. nhsUnlocked is the brain-child of two NHS hospital doctors – Chris McCullough and Matt Jameson Evans, the founders of the not-for-profit doctors pressure group, www.remedyuk.org.

They say

We want to expose the postcode lottery and by getting patients who are really motivated, we hope to do this. This is the only way we can bring pressure to bear on the government and the people who run the health service. We need good hard facts and by getting people to record all the data online we can present it to the people in control in a clear fashion.

The site is organized around illness Groups, for example Progressive Supranuclear Palsy, Chronic Back Pain, Maternity. Amongst these Groups, the site features the Hepatitis C Trust Group. Why Hepatitis C is not a generic group like other health areas, but a Hepatitis C Trust Group, is not immediately apparent. Maybe the Trust presents as a pre-formed group already pressuring the government? Or a ready source of hard facts and people to record data on HepC. Whereas the other “illness areas” may not already be so organised.

But, hey guys, thanks for the link to this blog. I’ll be interested to see where it goes and how it develops.

Checking their other links led me to having a view of the Forums. Not done that for a long, long time.

It was about a year and a half ago I fell out of the forum I established in 2005 while I was on treatment. I see the Boltons are still running it. Single-handedly it looks like, as Carol seems to be the only moderator. They changed the name, when I handed it over to them, to The UK Hepatitis C Forum.

Their site says they have 1071 registered users and 113344 articles – so that is over the four years it’s been open. Traffic seems to have peaked in Oct 2008 with 15,000 visits per month dwindling down to 446 visits in the month of January 2009 (according to stats generated by Webalizer Version2.01). Not sure what’s about. When I visited there were no members online and I was the only Guest.

HepCFriends is a forum set up about one and half years ago by several people who moved away from the UK Hepatitis C Forum. Their front page says they have 216 Registered Members and Total Posts of 11,605. Not bad for the length of time online. And a friendly forum it appears to be.

HepC Nomads is the most recently set up board. Their front page says they have 683 members and Total posts of 71,874. However, no more information from their front page. You have to join to see anything else.

My experience of running a forum is that many people with HepC “lurk” for a long time, reading the forums and posts before deciding whether they will “commit” to identifying themselves with a forum. Lots of people just read and never do join. So it’s a shame they can’t see what’s on offer here. And a puzzle to me that it’s a closed club.

I also checked some of the US Forums and still think their layouts are hard to follow – so the UK based forums have the upper hand here.

But I find myself wondering if Forums are still meeting the need. Certainly there is a lot of in-fighting amongst members that interferes and takes away from the experience for a number of people. And splits communities too.

I sense that new developments in social media, the new types of online communities such as Facebook and MySpace, are beginning to impact on the way we think about social connections via the internet. Developments like Skype, vlogging on sites like YouTube and Twitter are influencing us to connect with each other in new ways. They will also influence what we look for and how we make contact with others from our patient communities. Online communities will still be about sharing and support but in different formats.

There are new types of online patient communities already growing, carrying an emphasis different than the forums, a different type of support.

nhsUnlocked is one of these. And so too is Patients Like Me whose aim is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, they have created a platform for collecting and sharing real world, outcome-based patient data and then establish data-sharing partnerships with doctors, pharmaceutical and medical device companies, research and non-profit organizations.

Below is a video report (sorry about the ad) from CBS News about Patients Like Me

The focus remains on treatment and outcomes. But community and mutual sharing and support are still strong components.

Hepatitis C blogs like this one are dwindling. Checking the sites on my blogroll I see many are now cobwebsites. People who have completed or abandoned treatment have ended their blogs or sometimes just left them hanging.

Some bloggers, however are expanding and developing. There is a French blog for MS that has video interviews, videos from friends and other members, sells T-shirts in support of the MS societe, features news and views. A lively community feel.

As well needing to update my blogroll it makes me think what is next for here, what is next for me to do? Last year I needed to move on and make some transitions away from Hepatitis C. I also reached the point where I needed to return to professional work. I needed an income and I needed to stop being a patient.

What I have learned during that transition is that, while I do not live with the HepC virus any more, I do live “without HepC”. HepC hasn’t totally gone out of my life. I still think about it. My liver still hurts, I am careful about the small amounts of alcohol I take, I still wonder if I should have blood tests, an annual HepC test and whether I should track my Liver Functions. I still regularly get emails from people asking for advice and help dealing with HepC.

Well this ramble today about online developments in patient support is leading me to thinking. And to consider starting to look for a new HepC project to get involved with.

Any ideas or suggestions gratefully received.

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