Archive for November, 2004

Pre-Treatment Assessment

Monday, November 1st, 2004

Today Carol and I went to the hospital for my pre treatment assessment. It was the first step in starting my pegylated interferon and ribavirin treatment. I don’t think I felt particularly apprehensive, guessing I would need to have blood tests and give my medical history to the clinic nurse. She spent about two hours with us going over my medical history and background, giving us information about the potential side-effects and how to deal with them, as well as ordering about eight blood tests and a ECG.

During the discussion we identified a number of risk factors which could have been the source of my catching Hepatitis C, but of course we will never know specifically where I have got this virus from.

When she concluded that I was fit enough to undertake the treatment, she asked if I wanted to start after Christmas – I suddenly felt disappointment hit the pit of my stomach. No, I want to start this week! I knew I want to get on with this now, having spent weeks thinking and preparing and making the changes in my life that I need to.
We agreed I would start the following Monday, 8 November.

Afterwards, as we searched through the hospital corridors for the various blood and ECG departments I felt very firmly I am now ‘inside’ the hospital system and remembered what it is like to be a patient. I really don’t like being a patient, particularly the whole culture of dependency that hospital systems seem to create and need in order to treat patients. Having said that, my clinic nurse did take the time we needed and didn’t make me feel she had to rush me through because my allocated time was up.

I travelled home feeling I have now taken the first small step on a journey of healing.

Pre-Treatment

Monday, November 1st, 2004

I have just returned from an extended holiday in Spain, enjoying weeks of sun, sand and sea. Although the trip had already been planned, I realised it would be a good chance to rest and get ready for the long year of treatment which lies ahead of me.

In the weeks running up to my holiday I was working hard to finish off various work projects and to make arrangements and plans for the coming year. When the day of my departure arrived, and I had completed as many of these as possible, I was exhausted and feeling very depleted. Too tired to face another set of decisions about what to pack for Spain, I just took ‘everything’ – and ended up being charged for excess baggage!

It is a real confrontation to realise that the number of tasks and jobs that I struggled to get done in any one day now would have been nothing for me to accomplish a few years ago. It isn’t just age! My liver is not functioning as well as it used to and this leaves me tired, achy and sometimes irritable (liverish as they say!).

It is hard to explain this experience. Because of the fatigue that HepC brings, I try to allow myself as much sleep as my body wants – and this is usually 9 hours a night; part of the way through the day I often feel I would like to have another short sleep. However, when I am working this is not possible and I then feel very tired by the end of the day, even overtired and unable to fall asleep. I know that work colleagues and friends see me at my best and I appear to be functioning normally. When I plan appointments and agree times to ‘avoid rush hours’ I am actually leaving myself time to make a slow start to the day, limit the time I am away from home – and not just avoiding the stress of traffic. I think if I told people I would be too tired if I arrived for a 9 am appointment they would think I am some sort of malingerer.

The aches are probably easier to understand – at least this is my understanding of how they occur. When the liver cannot metabolise the toxins we put into our bodies in food and drink, it passes them on through the bloodstream to other parts of the body – and the toxins are then lodged in muscles, joints or even the skin. In most healthy people this is probably not particularly noticeable. With HepC the liver is so disadvantaged it has to pass on alot of these toxins, and the muscles and joints end up feeling achy and the skin can often show ‘irritations’ or rashes, etc.

My time in Spain was just what I had needed. I could sleep as much as I felt I needed to, avoid unnecessary stresses and ensure the food and drink I had were as ‘liver-friendly’ as possible. (I suspect I will return to the topic of ‘liver-friendly food’ in more detail another time.) It wasn’t long before those very heavy dark circles around my eyes faded and I felt rested again.

I spent a lot of time thinking about the treatment I am about to undertake and how I can re-frame my life over the next year to give top priority to my healing process.

A friend gave me the use of her holiday home on the Costa de la Luz and for two weeks I was on my own – relaxing and focusing just on me. Ordinarily, my life is full of responsibilities (like everyone) for others as well as myself – family, work, friends and so forth. Juggling these is always a challenge and sometimes it can feel like ‘myself’ can slip down the list. I suspect this can be true for many of us. So, it was really useful to have the experience of only having to put myself first. How selfish, I thought, to do just what I want! But as someone said to me recently – is it selfish to attend to your own needs first? Isn’t the person who has seen to their own needs first in a better position to then genuinely attend to the needs of others – rather than ‘depriving’ themselves while they focus on others.

The experience has helped me realise what it is like to put what I need first and this is ok during this treatment so I can give myself every chance for the medication to eradicate the virus from my body and to support my liver getting well again. Not only is it ok but it is also necessary. The balance of my needs and others could shift again next year, but for this year I need to be self-centred.

So I have arrived home feeling very calm, relaxed and re-focused. And with a positive feeling of being ready to take on the pegylated interferon and ribavirin treatment!