Archive for November, 2004

Week 0 – Wednesday

Wednesday, November 10th, 2004

Today was the first day I went to work after starting the treatment, working my usual 3:30 to 10 pm shift. During the morning I was sure I could identify a slight feeling of sadness, a sense of being ‘low’. An after-effect of the ‘high’, the relief that I hadn’t come down with a ‘dose of the flu’ as I had anticipated?

However, after a few hours at work I again felt very low – I suddenly thought “I can’t keep my mind together to organise what I am doing here. I want to go home to bed – the side effects are showing themselves and I am so exhausted I cannot work. I won’t be able to do this job, I’ll have to give it up.” I felt myself spiralling down and down. I pulled myself together enough to decide to take my meal break, just to take some time to think what to do. As I ate I realised I was actually very hungry – but hadn’t felt any sense of hunger beforehand at all. This same ‘absence of appetite’ had led me to have a very light lunch earlier in the day. Twenty to thirty minutes after I had eaten I felt fine.

This absence of any hunger was a new experience for me – I have always felt hungry with a good appetite for my food. It made me realise I need to keep track of how much I am eating to ensure I have sufficient food in me. Otherwise I plunge into some sort of emotional abyss. It also made me aware that what I had thought was emotional or psychological was actually physiological.

I heard today that the documentary film about HepC, which I have been asked to take part in, has received funding and will go ahead. I am looking forward to meeting the film-maker Gemma in the near future. I continue to think it is important to let people know what it’s like having HepC and going through the treatment – to talk about it aloud and publicly. Too many people who are infected feel it is a stigma and they can’t disclose it. I feel very strongly about this and without doubt will write about topic in more detail later in this blog!

Week 0 – Tuesday

Tuesday, November 9th, 2004

I awoke the next morning, Tuesday – and felt fine. I spent the day, which had been set aside (as advised by the hospital) to cope with the flu-like symptoms, lounging about and talking on the phone to well-wishers who had called.

To my surprise, Mynurse telephoned asking how I was feeling after the injection. I was touched that she had followed up on me when she has a busy work schedule already. It may be ’standard procedure’ as far as she is concerned but it made me feel I am not just a number at the hospital – and began to challenge some of my previous feelings about being a hospital patient.

I was feeling enormously relieved that the injection hadn’t seemed to produce any ill effects. I also felt somewhat fraudulent as I had talked to everyone beforehand about what these ill effects could be and now had to ‘admit’ I felt fine. However I sensibly decided I should celebrate this not apologise!

Week 0 – Monday, The Big Day

Monday, November 8th, 2004

My nurse had explained that the hospital refer to the day of the first injection as ‘Week 0′ because, of course, Week 1 is not complete until the seventh day after the interferon has been inside my system.

As the Big Day arrived, I felt very even in my mood but aware and apprehensive that I was about to have injected into my system some very powerful pharmaceuticals with a veritable catalogue of potential side-effects. At the same time I was looking forward to the medicine which will begin to protect my liver from the continual viral attack and give that organ an opportunity to begin to heal itself.

My appointment was 3 pm. Beforehand, Carol and I met up with my son Ben and his partner Sofia for lunch. I felt they were all being very considerate and ‘making a fuss’ over me – and I was letting them! None of us knew what dreadful state I could be in within a few hours. We had all read and heard the warnings about the ‘flu-like’ symptoms which can come with the interferon. I think we all had reflected and remembered that when we have had the flu we can feel very miserable and ill.

All four of us went to the hospital together – I think Mynurse* was surprised to see a posse of us show up for my appointment. (*I have decided to call her Mynurse as she seemed ambivalent about being mentioned by name when I told her I was doing this weblog.)

I knew that I have to attend hospital for the first few weeks until I can learn to do the injections myself. Mynurse told me the interferon would be injected in a different site each week – left abdominal area, then right side, before going on to left thigh area then right thigh. So when she asked if I was ready for the injection I lifted my t-shirt for her. I was completely shocked when she said – “you’re doing the injection today, not me”.

Carol told me later my face went visibly white at this point. I have always hated needles. It isn’t a phobia but an intense dislike, which I have had for as long as I can remember. I cope with blood tests or inoculations by looking the other way and pretending it isn’t really happening by chatting on about something else, anything else.

It may have been a shorter time, but I was sure I spent the next ten minutes trying to wheedle my way out of doing the injection. Mynurse was resolute and met each prevarication about ‘not being ready to do this’ patiently and logically. She showed me the procedure of checking the meds are correct and labelled with my name, ensuring the expiry date hasn’t passed, washing my hands thoroughly, assembling the syringe, checking there are no air bubbles, setting the plunger at the right level and making sure a ’sharps’ bin is nearby for disposal afterward.

After we had been through all of this I remember sitting and looking at the syringe and thinking to myself -”you have to do this. It’s what you came for and you know you can’t go through treatment without doing this, Ron. You have to face this sometime and now is as good a time as later.”

I heard myself commenting it was warm in this room here and Mynurse agreed and suggested we find another, cooler room. A few minutes reprieve, I thought to myself while Mynurse was probably thinking this patient might faint or something.

In the new room, it could be put off no longer and I removed the protective plastic cap covering the business end of the syringe. I was surprised to see a fine needle about 1 centimetre long. That was encouraging. I pinched a bit of flesh on my right stomach area, as I had been shown, and held the syringe like a dart and pushed it into my skin at a 90 degree angle. It didn’t hurt! Remembering the physical sensation, and discomfort, of novocaine being under the skin surface by the dentist, I decided to push the plunger very slowly. That didn’t hurt either. After doing a slow count to 5 as instructed, I removed the needle.

“Well, that was okay – it didn’t hurt like having blood taken” I heard myself say out loud. Mynurse laughed and said of course not – those needles are bigger in diameter and are inserted in your veins. As if I would know!

As we left the hospital and began the journey home everyone was keeping an eye on me – including me! I think I went into a state of heightened awareness as I checked any potential pain or discomfort to see if this was the beginning of the side-effects. I remembered Mynurse had said it could begin 3 – 4 hours after the injection.

My son Phil was the first to make contact to see how I was feeling. OK so far.

When 3 hours had passed we were at home, sitting comfortably and I felt fine. 4 hours came and went and I felt fine. Then time for my first dose of the Ribavirin tablets, complete with their own set of potential side-effects. However, as time passed no side-effects emerged and I felt fine. I went to bed at 10 pm feeling completely exhausted but hopeful for a good night’s sleep before the side-effects appeared.

First day back to work

Wednesday, November 3rd, 2004

I should explain that, although I have been self-employed for a long time, I have taken a part-time job as I know it will be less stressful than free-lancing where one never knows about the next project or how stressful it will prove to be. And the salary, albeit a part-time one, will provide a regular predictable income for us to live on. This is part of my strategy to de-stress my life in support of my ailing liver.

I was very fortunate to find a job as a Case Manager in an agency which arranges short term counselling for clients. I discussed my pending treatment when I was interviewed for the post, the extended holiday break I had already booked, and the potential that I might not feel well and need to take time off. I was delighted that my employers were still happy to offer me a contract of employment and I started in September.

I felt really welcomed back when I arrived for work – a number of colleagues giving me hugs and asking how I am. I have told just about everyone that I am HepC+ and having treatment shortly. A number of people wanted to know how I am and whether I have started yet. This feels very positive and supportive. Several people added they had missed having me around – which is a great compliment as I had only worked there three weeks before going off on my extended holiday.

At first I was certain I wouldn’t remember any of the procedures or administration but my supervisor said – ‘oh have a play and see what comes back to you’. And I did remember as I went along. By the end of 6 ½ hours however I was feeling fatigued and ready to go home.

Back to life in the UK

Tuesday, November 2nd, 2004

Today I am feeling my transition back to life in the UK is not going well. I want to hold on living life at my own leisurely pace and doing things in the order I feel like doing them – as I have been doing while I was a way in Spain. So I am finding all daily routines a demand. This is a really unrealistic point of view and one that I will have to adapt. For example, I am due for a dental appointment this week – whether I ‘feel like’ going at this specific time or not.

I am smoking a lot – 20+ a day. I have picked this up in Spain too, where everyone happily smokes everywhere at any time. I suppose being out of doors for much of the time and with windows always open the smoke is not particularly noticeable. However in our house it is; it makes the room smell and the ashtrays are foul. I only recently started smoking a few cigarettes in August, around the time I was advised that I should undergo the treatment. Stress. I was trying to take on board the implications of the treatment and face such issues as I might not be able to work much in the coming year if I am ill with side-effects from the drugs. As I am self-employed, it was apparent that we may not have much income if I can’t work much. So I am resolving to cut down the number of cigarettes and work towards stopping. Been wondering what the NHS Smoking Helpline might have to offer – as I am now becoming an active NHS patient/consumer!

On top of all this the weather is gloomy, cold and damp – it looks like it will stay this way all day.