Living Without HepC

Yesterday was injection #34 – 14 injections to go to 48 weeks.

A fortnight ago I was experiencing grumpy, then irritation and raging. Last week I found deep wells of sadness surging up and emerging.

It began with cathartic laughing and weeping during an aromatherapy massage with Carol. In my counselling session I also experienced great sadness about loss. Loss of my previous ‘busy’ life, my ‘wits’ (due to brain-fog) and in a number of other areas. Although I don’t like experiencing the emotion of sadness it felt a relief and release to let it go. As my therapist pointed out it is better expressed than repressed or depressed.

On Sunday Carol and I went to the opening ceremony for the creation of a sand mandala by the Tibetan Lamas of Drepung Loseling Monastery, who have been touring in Europe, the US and Canada. (Traditionally most sand mandalas are destroyed shortly after their completion. This is done as a metaphor of the impermanence of life. The sands are swept up and placed in an urn; to fulfil the function of healing, half is distributed to the audience at the closing ceremony, while the remainder is carried to a nearby body of water, where it is deposited. The waters then carry the healing blessing to the ocean, and from there it spreads throughout the world for planetary healing.)

Click here to see more pictures from that day.

I was moved to great sadness again as I listened to the chanting and meditations. In public, I experienced difficulty coping – really wanting to release the sadness through tears, which I did later in the ‘privacy’ of our car. Again relief and release.

I want to stay with this experience and go through it. It makes me realise how very quickly I begin to worry any sadness will lead to me becoming depressed and having to take anti-depressants. Not sure why I ‘worry’ about this but I can see it becomes enough to ‘turn off’ the feelings, which then leads me back to repressing and depressing the feelings. Which does lead to depression. Paradoxical. I am determined to stay with all this process and see whether there is more to emerge …

I don’t feel overwhelmed by all this feeling – it’s just a different experience and one I think is, again, the effect of the medications (not stimulating the seratonins, etc). As Mynurse pointed out, this treatment does lead men to explore the more feminine side of themselves. Which I recall is what Paul has also been saying in his blog.

In my appointment at the Clinic with Mynurse I discussed the pros and cons of extending my treatment to 60 or 72 weeks. We agreed by Week 44 I will decide whether I want to continue on, and Mynurse will confer with Graham Foster about it. I should point out this is my initiative – not because it has been advised on medical grounds. I know there are statistics which show an increased effectiveness with the prolonging of treatment. (I have to locate these again as I can’t remember which website I saw them on now.) I am aware that the first treatment is the best shot at eradicating the virus – and I am aware that my age is a factor not in my favour for SVR. So I want to consider all the options carefully – as part of my commitment to eradicating this virus and achieving wellness.

In the afternoon I ventured up Brick Lane to a gallery to see a photographic exhibition showing some of Michele Martinoli’s work. I had been invited to the Preview Evening last week but I had to work. Interesting photos – different than the sombre ‘Out of the Shadows’ photos, exploring men’s changing role in society. Years since I had been to this area and found it all very vibrant with it’s combination of Bengali and arts communities intermingling.

Having experienced this emotional process of sadness and released the feelings this past week, I do feel much more positive again.

With the amount of spam, mass hits on my site and the current viruses going round I guess I have become a bit suspicious about emails.

Last week I received 2 emails asking me infomation about explicit sexual practices and the risks from them - and I didn’t answer them as I questioned their veracity.

Thinking it over, however, they might have been people genuinely worried about this area. I also did not know the answers to the questions I was asked.

So if you are one of those people - still left wondering, I can only suggest you address your questions to The Hepatitis C Trust by email or use the telephone helpline.

Or, if you are worried you might be at risk, contact your GP or GUM clinic for a blood test. See information at the NHS HepC Awareness site

What a wonderful day it’s been – sunshine and heat all day. What an energiser! Of course it’s too warm to move quickly and everyone is feeling lazy – suits me as I’m like this most of the time anyhow at the moment. So I’ve been soaking up the sun in the garden and enjoying it all. Carol has joined in and we’ve spent a great day. Sudoku’s, coffee and Danish pastries, a bit of computing, drinking loads of water (managed over 2 litres so far I reckon) and a bit of eating.

Yesterday Ben helped me transfer my blog software over to WordPress and I’ve been trying to tidy up the loose ends and rearrange the side-bar. Haven’t got the Blog Highlights section up and running yet – or corrected some typos which came across in the migration – so there are some funny characters in the earlier entries.

Ben also added a new ‘gadget’ near the bottom of the side-bar. Under the heading ‘Latest From The HepCForum’ is a list of the most recent entries members have made on the Forum. Clicking on them takes you to that comment in the Forum. Very smooth.

Good thing he was helping me out with all this. I have just come across a recent entry on his blog – My Dad’s Pissed Off. He reproduced the list of things I wrote about in a blog last weekend. All of these items were minor life situations but I found them very irritating and said so. Here I am, ill with a chronic disease, on a heavy treatment with serious side-effects - and he thinks it’s funny that I’m irritable. Interestingly, he sees it as a case of age – “I’ll probably be just like it when I’m his age too” and goes on to refer to an incident I remember from my father in his dotage (he was at least 25 years older than I am now).

Looking back at both that blog entry, as well as the events themselves, it is funny. And several other people have said so too. Perhaps the combo treatment is helping me to explore and express my ‘old man’ self – whereas, of course, I see myself as, well maybe, middle-aged.

I also discovered he has written an interesting item on RSS and provides a useful link to a BBC article on RSS which he helped to craft. RSS allows you to identify the content you like and have it delivered directly to you, showing you the very latest information that you are interested in.

The ‘gadget’ on the side bar (I referred to above) is an RSS feed which Ben was writing about. So you can see what it does. (And there’s a heading ‘Syndicate This Blog’ on the sidebar too, giving you two methods to link my blog as a RSS feed.) This is the sort of feed which enables lots of sites to carry the ‘latest news’ from the BBC on their web page - and now everyone can do the same with other websites of their choice.

I’m off to find some more water and checkout the garden as the sun begins to set. I hope others in the UK have also enjoyed what has been our first taste of summer days.

I am relieved to say that I have found my centre or equilibrium again after the recent few days of riba-raging. In my therapy this week I kept checking myself out - yes I do feel ok, yes I do feel positive again about me and the treatment. It has passed. And I have coped. In the ways that I can find at the moment. I did use a -primal scream - strategy several times - opening my mouth and letting it all out at considerable volume. Did make me hoarse but it helped release the frustrations. And Reiki, meditations and counselling helped me get back to my equilibrium.

I know I can let rip at people - did that several times last weekend. It didn’t really help though or bring relief - because it is the drugs that cause my raging not the people. Sure they provide a convenient “hook” to hang my rage on (like saying the wrong thing to me, etc) but people always have (and always will). And I was raging in a different way than I usually do when presented with these ‘hooks’ - Over The Top. It’s the drugs I am frustrated with - how do I let rip at the drugs? That’s how I got to the “primal scream”, visualising my anger at those drugs and just letting it go. And it seems much fairer to other people, who really don’t deserve a large helping of OTT over small incidents.

So for the moment I am back to a reasonably good space and learning from my recent experience. I really am not the person I used to be a few years ago - I would never have gone through what I have just written about or used the coping mechanisms I described. And I feel better than the person I used to be a few years ago. Hepatitis C has changed my life - and not for the worst.

A few days ago I was writing about the spamming - and reassuring people it isn’t me sending out those emails with viruses!!

In a recent news release on the BBC News Online, the UK National Infrastructure Security Co-ordination Centre’s (NISCC) warns this current bombardment of viruses is a serious and organised threat to UK businesses and government. It describes the use of emails - very much like the ones I put in my blog, as part of a well organised, structured and sophisticated industrial attack on organisations and businesses.

Well they’re not that organised and sophisticated. I guess having a .com domain (common to businesses), my site falls within the target parameters but “My Hepatitis C Weblog” clearly is not part of a critical infrastructure, such as telecommunications, energy, power station networks or government.

So while the onslaught continues (I received another 50 infected emails yesterday) at least no one is seriously going to think it was little me behind it. (Do you think the treatment tends to make one a bit on the paranoid side?)

After a turbulent-feeling weekend I was glad to find myself on a more even keel yesterday - although I didn’t really want to do a lot. Lazy day, I guess.

In the evening I did my injection as usual - #32. Well, almost as usual. Having taken a few minutes to try and clearly remember where I had done last week’s injection (brainfog bigtime) it came to me that this week I was due to inject in my abdomen again. Just as the last of the interferon was being plunged into me I saw some air bubbles in the syringe going into the needle too. Panic. I hadn’t remembered to push out all the air at the top of the syringe first - as I had been taught to do 32 weeks ago. (brainfog bigtime)

I could only remember that injecting air into the body is lethal - oh, yes, that’s intravenously. What about subcutaneous injections? Don’t know what that will mean.

Quick call to Mynurse’s pager and soon Mynurse (trying to get on with her shopping in a supermarket) was on the phone. Reassuring as ever. Not serious to have air in adipose tissue, not lethal like in veins. Probably will be absorbed in time with no trouble. She ended with a wise warning note, however - any problems contact NHS Direct or go to A&E.

Relieved massively. No problems throughout the evening or night with it.

Mynurse called again this morning to see how I am - having consulted with others on the medical team and with the manufacturers about how much air is in the pre-packed syringe. Excellent and reassuring support.

No problems with that today - so I guess I will survive injecting air into my body this time.

The rest of the day has been quiet so far - pottering about on the computer and housekeeping sites, etc. Getting fed up with spammers and viruses.