Post Treatment Week 17: Looking At Things With A Different Perspective
On Wednesday this week, at work, I was startled by the sound of whistling. It didn’t last long once I realised with astonishment it was me. I never whistle – can’t remember the last time. What was happening? Then on Thursday morning, uncannily, the same thing happened again. I was just as startled and astonished. Stopping to reflect, I realised I’m feeling happy. (And that my head and my heart don’t always seem to be in synchronous communication.) Markedly happier than I’ve felt for some time. And it’s still the same today, Saturday. Happy.
And I’m noticing the sunshine and blue skies with billowy clouds and enjoying these in a way I haven’t for some time. Several others have commented on perceiving things around them differently now after their journey through treatment. There must be something to it – I’ve just realised my recent fascination in taking photos is, of course, an interest in looking at things with a different perspective, even everyday objects and places.
Have I turned some kind of corner on the post-treatment road to recovery? I think so. It is four (calendar) months today since I finished treatment.
Looking back on it, it’s been almost as tough as treatment – in a different sort of way. In those first few weeks I felt totally drained, tired, exhausted living with the haemolytic anaemia and a “skinfull” of pegylated interferon and ribavirin still swirling about inside me. The emotional effects were difficult. I felt very low – probably what we refer to in everyday terms as depressed. I make the distinction between this and ‘clinical depression’ as I think it is not depression within formal diagnostic terms. And cross – I felt worse off now than I did before I started treatment.
I wasn’t even excited about the ‘end of treatment’ PCR negative test showing I had cleared the virus. Too low to celebrate. And I was missing the regime of treatment – restricted it was but I knew where I was, didn’t I. This felt like a ‘no man’s land’, finished treatment and virus-free but not able to pick up and get on with life. Brain-fog lifting so I could think more clearly about what I should and wanted to do, but no energy or drive to put anything into action. Looking back, I had a nagging thought at the back of my mind that this would be it – the meds had left me like this permanently.
All this had such an impact on me in the first few weeks I felt I couldn’t write about it openly on my blog. Madness. I didn’t want to admit being a failure, completing treatment and ending up a mess. Feeling worse now than before. Experiencing the ‘ghosts’ of treatment side-effects still haunting me. Although I had achieved 48 weeks of treatment, I didn’t want others on treatment to know what this achievement had brought me.
It was such a relief for me to discover through the Post Treatment Forum that others were encoutnering many of the same feelings and experiences. That really restored my confidence and made being in ‘no man’s land’ a bit easier to bear.
Thanks to the continuing input and comments on that Forum it looks like the following are common experiences in the post treatment phase:
• Clearing of the brain-fog and regaining the ability to think and remember again
• Aggravated skin irritation or rashes – even where this hadn’t been a problem on treatment, and worse where previous skin irritations appeared during treatment
• Moods – ‘post treatment blues’, sense of loss or mourning at the end of treatment. And continuing outbursts of anger, but not as ridiculous and pronounced as during treatment. Some people begin to wonder if the treatment was worth the cost – they feel worse now than they did before they started; it takes concentration to remember the value of clearing the virus people have lived with, often unwittingly, for years.
• Insomnia continues – but begins to get better
• Anaemic continues – the medications causing it are of course still in the body which hasn’t yet been able to recover and re-build. People still feel weak and breathless, but less so as the weeks go by.
• Hair continues to fall out or thin, albeit more slowly
• Hypothyroidism – continues where thyroid function was disturbed by meds during treatment.
This list looks a reasonable – and possibly complete, inventory of post-treatment experiences. I suspect it’s the first record of information about this area. I don’t think there’s much awareness or knowledge amongst medical teams, for example, about the after-effects of treatment. So it feels important to make a record of it and to share it with those on treatment. Being armed with information about other people’s experiences can be reassuring and not necessarily alarming. And raising awareness about Hepatitits C is not just important amongst the general population but also for those going through the treatment journey and health professionals who work with HepC.