Living Without HepC

Greetings from Spain

We arrived late Wednesday evening - exhausted and over exhausted. So Thursday was about trying to catch up from being so tired. Couldn´t really muster up much enthusiasm - except for the walk to my favorite cafe for a ´cortado´and a Coracola ( “the snail” - my spanish Danish pastry, despite the off-putting name)

The sun came out yesterday afternoon so I spent a few hours in it - heaven soaking up the healing effects - feeling the sertatonin uptake improving, the vitamins coming my way.

Still feel very slow and reduced - but as I predicted, walking slowly along the road and having frequent rests makes me look like a tourist in Spain. Beginning to relax into it. Time to go back home now to sit by the pool some more. Well, that means I am tired again. But feeling happier and optimistic still.

It’s been 10 days since I have written on this blog. Hard to believe it’s that long because it seems like yesterday I last wrote and particularly because time is passing very slowly at the moment for me. Having gone from ‘slow’ to ‘slower’ – and from ‘reduced’ to ‘further reduced’, I feel like I have almost reached ‘standstill’ now.

On Monday last, all I had to do that day was go to the hospital for blood tests. And that’s all I did. Exhausted when I came home, I crawled onto the bed for a rest – put the TV on but felt too tired to watch, so only listened !!??!! I was feeling nauseous, weak, achy, exhausted - but not sleepy. Then I began having fantasies about eating a McDonald’s hamburger and chips. I thought ‘that’s it, now I’m losing my mind along with everything else’. I haven’t eaten red meat for about three years – and a McDonald’s for about 10 years or more. To add to this bizarreness, when I told Carol, she said she had just heard from Phil that he wasn’t coming home for dinner as planned – and she had a steak going spare. So I had steak and chips, sitting up in bed! Very odd for me, but I suspect the body needed it and was calling out for it.

Tuesday and Wednesday, I managed to meet my counselling and work commitments by doing little else all day. Resting on the bed every couple of hours or so before going out working. By Wednesday evening, however, I was running on ‘adrenalin only’ by the time I came home at 10:30 pm.

So on Thursday I faced up to it and gave in – acknowledging how slowed up I feel and that I need to take time off work. So I called in sick for Thursday and Friday. This means I have had 4 sick days in total over the past year. Not a bad annual sickness record for any employee, albeit I only work 3 days per week. But a really good record for anyone on the 48 week combo therapy throughout this period of time – and with a bout of Bell’s Palsy on top of that. So, while I ‘gave in’ to calling in sick, I also consider it an achievement to have managed to work so consistently.

Over the past few days I have done very little, sometimes just sitting in a ‘zombie-like’ state watching it go on around me, when I’m not retreating to my bed to rest feeling light-headed. We have had our cousin’s 17 year old daughter with us for a few days stopover between New Zealand and returning home to Spain. The energy generated by her and Phil together is great but exhausting to keep up with.

Mynurse telephoned on Tuesday to say my Neutrophils had improved, returning to 1.1 (the level they were previously). People have consistently observed that I look very pale recently, but politely not commented that I also am looking haggard and worn, which is how I know I look.

Today I am feeling I can begin to face the list of preparations to go away. Not only is there the packing and household to sort out – so everything is ready for the friends coming to stay while we are away, but there are the other jobs too (the car needs new brake pads, letters need to be written and phone calls to make, etc).

I have a real sense of ‘hanging on’ over this last few weeks of treatment – which is what everyone says about this phase. I haven’t really the energy to look forward to going away but I am hoping that our plans to be in the sunshine and on holiday in the last two and half weeks of treatment is going to prove to be a good one.

I saw my consultant yesterday and talked through my current haemoglobin levels and extending my treatment.

During the discussion I discovered I had heard the wrong numbers last week when I rang MyNurse about my blood test results. Brain-fog again. My haemoglobin did drop from 11.9 but only to 11.1 (not 10.1 as I had thought). I was worried that a 1.8 drop (as I thought I had) over a five week period was a serious drop – and the beginning of a rapidly downward trend toward concerning levels.

I am reassured my haemoglobin levels are within what is expected at this last stage of the 48 week long haul – and there isn’t any concern at the moment about me flying. So I can achieve the objective of getting to Spain soon. And a few moments ago Mynurse rang to let me know my haemoglobins from yesterday’s tests are back to 11.8. What a relief.

She did add that my Neutrophils have dipped slightly and asked me to have another blood test next Monday; she is speculating that I am usually tested on a Monday (before the weekly injection) and this week I was tested on a Wednesday, two days post-injection, so that may have impacted on the results. So back next week for another Monday sample!

My consultant was very helpful and supportive around the issue of extending treatment and we discussed the pros and cons of a longer period on treatment.

Having reflected on that information, and weighed up what my body and heart are saying at this stage, I have made a considered decision to end this treatment at Week 48 as planned. I wanted to be sure I have done everything I can to support this treatment regime working because I am committed to clearing this virus - whatever it takes. However I think the cost to my body, to my life and to those around me of living on this treatment for a longer period of time would be greater than the small improved percentage chance of clearing this virus. I am still optimistic and feeling positive about the outcome I will achieve at the end of 48 weeks.

So I am now back to feeling tired but content. And optimistic and hopeful. From their demeanour, attitude and comments I can see that both my consultant and Mynurse view my current level of functioning as typical of the last few weeks of the long haul. I can expect to find everything, including work, tiring. And I need to focus on taking care of myself, getting to the end and recognising I am not 100% at the moment - and not expect myself to be.

That’s just made me laugh out loud - I haven’t been 100% for so long now I can’t quite remember what 100% means! However, I have adjusted and reduced my expectations on my everyday functioning so many times over the past weeks and months I have no doubt I can re-adjust again. So I guess I am saying I am not 100% of the very reduced level of functioning I was at last week.

Four injections left until Week 48. Looking forward to my hospital appointments tomorrow but I can feel my emphasis shifting from a discussion about extending treatment to a concern about my current haemoglobin levels. We are due to fly to Spain in two weeks and I want to be well enough to go!!

On Saturday we had Ben & Sofia visit for the afternoon and evening. I knew that Carol was struggling with a headache as well as cooking and entertaining. By late evening it had become a migraine. In addition to looking after me, Carol is also supporting her mother through the transition of moving into an old people’s home and, as a professional Complementary Therapist in her own right, continues to provide treatments for her clients (several of whom are also living with blood born diseases). On Sunday it felt like we were both in a bit of a ‘collapsed heap’ and I felt so aware of how much Carol supports me and what a cost it is to her too, me being on this treatment. Those of us who are fortunate enough to have carers supporting us through this treatment are very fortunate indeed. I want to acknowledge just how much carers in many ways are also ‘going through treatment’. I know this is the case for Carol. And, in my state, how difficult it was to offer her meaningful support during her ‘bad day’ – it felt awful not to be able to do more to alleviate her pain, as she has done for me on so many occasions over the past months.

While Ben was here on Saturday, we talked about the Forum. Ben upgraded the software to a newer version and we discussed some housekeeping changes to the format to prevent a future problem of readers having difficulty navigating through hundreds or thousands of topics all in an undifferentiated list over many pages. Because I had made a mess earlier in the week manipulating the software and moving posts, I decided to get the changes done while I had the technical expertise in the room with me. Focused on my anxiety about not making technical mistakes, I didn’t consider notifying Forum members of the changes in advance. And some members have reacted angrily, rampaging about the Forum (it seems to me) with accusations of censorship and sarcastic comments. I am upset about this, not least because of my state of mind at this stage of treatment, and because I have invested so much time and worry in hosting the Forum to provide a positive place for people.

So I decided to focus my time and attention elsewhere at the moment. I haven’t been to Forum since Sunday and will leave it till the weekend before I visit again.

In the meantime, Carol is feeling better, and we are both back to a better level of functioning. I have at last managed to sort out my car insurance, due for renewal as well as get the MOT carried out on the car.

While those of us on treatment do feel sensitive and easily-offended by change, life isn’t just about treatment – there are also the realities of everyday life to get on with and devote time to as well.

A few days ago, ‘tired but content’. As the week has gone on I have found it difficult being more and more tired. I also noticed an increasing frequency of indigestion after meals, occasionally a slight feeling of nausea. I haven’t experienced either of these previously during treatment. And bouts of feeling ‘swimmy’ in the head and occasional dizziness or vertigo.

I spoke to MyNurse – haven’t called for support for ages now, wanting to just check this out and ask about my last blood results for my 22 Aug visit. Reassuringly she pointed out that the last few weeks of treatment often do bring side-effects again, and that I will get tired. My Haemoglobin level has dropped to 10.1 but my ALT remains within normal range at 37. I notice from previous results in mid-July my Haemoglobin has dropped from 11.9. So I guess that is why I am noticing the difference in my energy levels at the moment.

MyNurse recommended taking lots of iron in foods, mentioning spinach and chocolate. So I have promptly taken to eating Green & Black’s organic bittersweet 70% chocolate – for medicinal purposes of course. I also felt obliged to stock up well when I discovered a 3 for the price of 2 offer on at my local supermarket. And allowing myself to be ‘slowed down’. Well, sometimes I have no choice - but I have taken to warning everyone at work this is how it is at the moment (instead of feeling I have to push myself to be 100%). I also feel fortunate that counselling is a relatively ’slow-paced’ activity so I can keep up, especially since it is familiar territory for me whereas it’s usually new for clients.

I am meeting with MyNurse and my consultant, Graham Foster next week so no doubt we will touch on my current health issues again. I have asked to see Graham because some weeks ago I raised the possibility of extending my treatment for 12 or 24 more weeks. My body and my heart are telling me I am coming to the end of what I think I can cope with in terms of living on treatment – but I do want to consider my consultant’s medical advice about the benefits and costs of going on. I am still mindful of the information that the first shot at treatment is the best shot and that my age is a factor not in my favour. So I want to listen to my head on this issue, as well as my heart and body, before finally deciding when I want to end this treatment.

In my therapy session this week, I found my anxieties about ending this 48 weeks coming to the surface. Since my Week 12 blood tests results I have enjoyed some sense of being ‘clear’ of this virus, of living without it during this treatment period. As Week 48 looms up I realise that this sense of security, tenuous as it is, will stop when I finish taking the meds. Will I remain ‘clear’ of the virus without the interferon and ribavirin floating around inside me? That is the anxiety, of course, and one I will have to live with over the next few months.

I also realised how hard it feels to even acknowledge the possibility that this treatment will not be successful. Whenever I read about people doing a second or third course of treatment, or hear about people like Richskeen living with rapid, acute HepC cirrhosis, I am aware I find it hard to entertain the possibility that this could be me in future. As someone said recently, no one goes into battle thinking they are going to lose, and then wins. I find it hard to entertain the possibility of an unsuccessful outcome – because it isn’t the “positive thinking” I feel I must have to see me through this treatment. I find it hard to consider even the possibility of losing the battle at this point in time. Yet it is a possibility that I should consider - there are no certainties. It’s tough one. It does highlight for me how hard and determinedly I have been battling this virus – doggedly, without considering any possibility of ‘defeat’.

So the ending of treatment brings more change – and transitions to a different stage of living with HepC, and hopefully without HepC. I notice that some people on 24 weeks seem to have a simpler view – “got through the treatment and that’s it, done, now just wait for the results”. I am thinking that the 48 week ‘long haul’ brings a different perspective and perhaps different issues.