Living Without HepC

Yesterday I went to the hospital for my four-weekly appointment with Mynurse. I think, as symptoms and side-effects go, my list was not too impressive (or perhaps that should be ‘concerning’).

I reported that I had felt a bit blue one morning last week for the first time since I have been on treatment. Mynurse listened carefully how this had shifted (I went to work and got on with an ordinary day and the ‘everyday activity’ dispelled the gloom!).

And I reported that my fatigue continues – and red blotches on one side of my stomach where I have done previous injections still ‘hang about’. We will keep an eye on them. I have begun to get reflux after eating some foods so I will now keep away from those foods! (It started when I ’sampled’ some M&S breaded chicken flavoured with pepper and lemon – processed food!! I haven’t eaten processed food for about two years.)

We also talked about my hair loss. It will likely grow back – in the meantime massage my scalp more.

My weight remains steady – the same as it was when I started treatment. And my pulse and blood pressure remain ‘good’.

And I filled in the standard form with questions gauging depression & anxiety. This is a standard psychological test used universally (I recently came across it as part of some research questionnaire for social workers about stress.) It is the nFer Nelson HADS test (Hospital Anxiety and Depression Scale). Although I am better at talking out loud about anxiety and depression directly, I can see it is a useful gauge for Mynurse and I am reassured that I am being monitored!

I collected my meds and had blood tests done. (I have to confess I did keep my eye open for the male phlebotomist that Wendy referred to, but no evidence of him there yesterday!)

Mynurse called in the afternoon with the results of the blood work. My ALT is 30 and AST 31 (both these were raised last time). I will add these to my table of blood results. I have posted all blood results now and these can be seen by clicking here.

I have been invited to take part in a live webchat on The Hepatitis C Trust website on Monday 4 April between 2 and 4 pm – to talk about my experience living with hepC and undergoing the combination treatment.

Visit their website at http://www.hepcuk.info for further information and instructions on how to ‘log in’ for the webchat.

I am really looking forward to this occasion and I hope some of you who regularly read this blog and leave comments will take part – it would be good to chat!

It would also be good to talk with those of you who read this blog and haven’t yet left comments. It’s great to know that alot of people visit this blog (according to my Statistics file there were almost 2000 direct accesses to the site last week) and it would be great to have contact with more of you!

Look forward to talking with you next Monday!!

Anyone visiting this blog for the first time, as many have been recently, might well wonder where is the information about what it’s like to be on the combination treatment! I have recently been writing about the Out of the Shadows Exhibition, reiki, new members of the blogging community and issues to do with Hepatitis C. But where is the description of life on treatment?

I could point out that life on treatment is not all about the side-effects or the physical experience of the treatment – but for some people it is. I am fortunate not to have had some of the more difficult side-effects that can arise with this treatment. But this doesn’t mean I don’t have any!

By Week 20 I am realising that there are different phases to this treatment. In the first phase, probably up to Week 12 (when the hospital does blood tests for the presence or level of virus remaining in the system) I was very pre-occupied with the physical and emotional sensations I was experiencing as a result of these powerful drugs coursing through my veins. And earlier entries in this blog (from November & December) will show this.

I think I have now moved to another phase where I have got used to, more or less, the side-effects and limitations of being on treatment. These are chiefly fatigue, breathlessness, some brain fog, irritability, loss of appetite. Actually that sounds like enough to be going on with! And I wouldn’t say that I live my life as normally as I did before treatment. I do feel ‘reduced’ at times by this treatment and limited in what I can do in any one day – a trip into central London and back for an appointment is often all I can manage in a day. And an eight-hour working day is more than enough for me – after that I am ‘collapsed’ and resting for the rest of my waking hours! AND I sleep a lot – usually nine hours per night and, sometimes, another nap during the day.

Steve recently sent me a comment:

HI RON, ONE OF MY CUSTOMERS IS INTO REIKI, HE SAYS HE IS GOOD AT IT, HE OFFERED TO DO IT FOR ME. TO BE HONEST I HAVE ALWAYS BEEN A BIT TOUNGE IN CHEEK ABOUT IT. DOES IT REALLY WORK?
ALL THE BEST
STEVE

I decided to write about this in more detail rather than a few quick words as it is an intriguing subject.

I have mentioned having Reiki a few times in my blog but not really dwelled on it. I suppose this is because I haven’t been sure what people would make of this. A few years ago I wouldn’t have been sure what I made of it! Having been brought up with a Western perspective and educated with an assumption that everything can be understood scientifically or factually, Reiki presents a challenge – as I can’t understand or explain it scientifically or factually. But from experience, it has worked for me!

In mid-December I contracted Bell’s Palsy. Just what I needed on top of the treatment! I wrote about it on this blog (see December 20th – The Bells Palsy). On January 4th I wrote:

It was just over 2 weeks ago I was diagnosed and I had expected this Palsy to last 3 to 6 months. It must say something about my natural healing abilities that I have recovered this quickly – even allowing for the possibility that I had only a ‘moderate’ case of it.

Although I referred to it in the blog, what I didn’t emphasise was my experience of Reiki helping to overcome it! It was the Reiki which helped, encouraged and supported my natural healing abilities. Whereas Bell’s Palsy is usually expected to last three to six months, I was 95% free of the ‘palsy’ in just over 2 weeks. (My eyelid still sagged and drooped when I got tired in the evening.) My wife Carol had given me 8 Reiki treatments over that time. And the fast recovery is quite a result!!

Two years ago, Carol undertook attunements and study as a Reiki practitioner (and she is shortly receiving her attunements as Reiki Master). She sees clients for Reiki (including me) and has written an information sheet about it. She writes:

Reiki is a form of spiritual/natural healing where the therapist channels healing energy through the sequential placement of their hands on or above the client’s body.

It is a simple powerful process that allows the energy to flow wherever it is needed. The therapist cannot ‘inflict’ Reiki onto another person. The recipient has to choose to be ‘open’ to the energy. Reiki healing is not based on any religious beliefs; it is a holistic treatment that empowers the individual.

Reiki means ‘Universal Life Force’. ‘Rei’ signify its boundless aspects and ‘Ki’ is the vital life energy that flows through all living beings.

Reiki works on different levels. It promotes physical well-being and has a positive effect on emotional and spiritual equilibrium. After treatment most recipients feel calm, relaxed, refreshed and more at peace with themselves. Reiki can act as a catalyst bringing beneficial changes to lifestyle and ways of viewing the world.

Reiki Treatments are suitable for healthy and sick people of all ages. Unlike most other complementary therapies, there are no contra indications for Reiki treatments.

Reiki treatments can be given in any setting. However a quiet therapy room where there are few distractions is the most suitable. It is important that the recipient feels warm and at ease. This is often helped by wearing loose, comfortable clothes.

So Steve, this tells you about the basics as well as the practical of having a Reiki treatment. I would say the key to a successful reiki session is the phrase – the recipient has to choose to be ‘open’ to the energy. This may involve suspending intellect and judgement and making a leap of faith that Reiki can help awaken our inner healing resources.

I didn’t find that so difficult. After all our bodies do heal all the time – as well as grow, replenish and change. While our bodies may need medical help to clear diseases like Hepatitis C, the body can help and support the combination treatment through its healing abilities.

When it comes to having Reiki from one of your customers, I would think it useful to check out how you feel about this person, as trust and faith become part of the equation. (And check he has Reiki Level 2 status – which is what practitioners are supposed to have before they practice on others.) I would also think it would be useful to think what you want Reiki for. This could be something specific (ie Bell’s Palsy) or something more general (ie feeling down).

Almost as an afterthought, I will add that last September (in anticipation of the combination therapy) I received attunements for Reiki 1 and have started on the path of developing my Reiki practice too.

As I say to one of my sons who is sceptical – if nothing else, I have had an hour in a relaxing environment quietly thinking about myself, my health, my body and changing my perspective on the world. But I believe it is a much more powerful experience that does so much more and one that does leave me with a sense of calmness and well-being generally.

Reiki is one of the complementary therapies which are becoming more mainstream these days and increasingly recognised by the medical profession as a helpful support and supplement to medical treatments.

I am so heartened to see the number of us setting up blogs and sharing the experience of living with hepatitis C and doing the treatment. I have added links this week to blogs started by Steve, Ijaz Ahmed, Nick, Sue and Peter F. It is so useful for each of us individually, for us as peers supporting each other and for those readers who have concerns or issues about Hepatitis C and treatment.

Although I did a quick blog entry yesterday I somehow managed to avoid writing how I was feeling. Well, I wasn’t sure exactly how I was feeling. With hindsight (I am always better at knowing how I feel with hindsight – but getting better at spotting it in the ‘here and now’) I think I was feeling a little blue. Nothing specific I could name. It made me rather nervous. (Is there a precipice beyond which is a big pool of depression and I might find myself slipping in?) Previously on this treatment, I have felt ‘low in energy’ at times without feeling down emotionally at all. But this was ‘down’. It is the first time I have spotted this type of emotion since I have been on treatment. Going to work and getting on with ‘ordinary’ life helped and it soon passed.

Today I am feeling much more on an even keel. Carol has given me a Reiki treatment this morning and I can feel all the chakras and energies back in balance again!

Time to go off to work again soon. While I have spent 5 minutes writing on my blog today I think I have spent the last hour and a half visiting and writing on other blogs! And there are still emails I haven’t answered. Living with Hepatitis C is certainly a full time occupation!