I had my first full day on antibiotics yesterday and already I feel much better. Apparently the secret is to go for antibiotics sooner rather than later - and more than one course may be necessary due to the depressed immune system. I hope my shot later on today doesn't have any adverse effect with the antibiotics....
The antibiotics seem to have done their job - I finished them on Sunday evening and the cold seems to have disappeared, so that's good.
I had my appointment with Dr Sree this morning and he had been discussing my case with Dr Ryder at Nottingham. I understand Dr Ryder deals with the not-so-straightforward cases.... i.e., me because of the cirrhosis issue. Because I cleared the virus so quickly and had an undetectable result at week 4 they have decided to keep my meds at the same level for the foreseeable future - like a "maintenance dose" . I am really pleased I don't have to have the neupogen injections or the blood transfusion, and think I can continue my treatment at the level it is at now quite happily.
I have to have my 24 week pcr next week. Hopefully it will show the virus as undetectable again, if it doesn't then I may still have to have to neupogen injections so we can up the meds dosage and zap the virus. Fingers croxxed that won't happen.
I am SO looking forward to getting to the halfway point and beginning that countdown, I can't tell you how good that is gonna feel.
I feel quite well in myself... I have had a bit of a headache for a couple of days which may or may not be due to just finishing the antibioitics. I have been so busy watching to see if the hair on my head is disappearing that I didn't notice that the hair has all but disappeared from my arms.... bald arms I can cope with! I also seem to have a bit of a tummy bug most days, but again that is bearable and I am still sleeping 12 hours every night, which is also very bearable, especially this time of year!
Week 24 - the magical halfway point in my treatment. I can hardly believe it, what a roller coaster its been, and no doubt more to come, but it does give me hope that I shall get through this disgusting, horrible, revolting treatment with most of my body still intact, albeit rather battered, bald and bruised.
Today will be my 24th injection and when it comes to week 48 and my final injection I will still have to take the ribavirins all that final week to finish my tx. I never thought I would get so used to taking them that I forget to stop halfway through my meal to take them, but its happened several times now - even though they are on the table under my nose!
I have had a rather nasty tummy bug this week but things are settling down again now I'm pleased to say. I have also been extremely tired all week and I don't really know why, I'm not really doing any extra work or anything (maybe its the tummy bug?). Last night I went to bed at 7.30pm and slept though until 8.30am this morning. I just feel tired and worn out all the time.
I have my 24 week pcr test on Monday so fingers crossed that it will come back undetectable, but it does take about a month for the result to come back, and my next clinic appointment is the 26th February, so I may not get to know the result until then. Genotype 1 is notorious for disappearing whilst having tx only to appear again when tx ends, but we'll worry about that when/if it happens.
I understand there is an article in this weeks Bella magazine about hep c and two of our forum members, Chrissy and JB, who are committed to raising the profile of hep c. Indeed I have just heard that they are to get married on world heppers day, 19th May, excellent news and congratulations to both of them.
I had high hopes of feeling euphoric when I reached the half way stage of tx, but it didn't happen like that. It was an emotional time, but instead of feeling happy I admit to feeling a bit down for a few days. I thought "right, half way, lets try and get back a semblance of normality. Lets try and get back to the gym once a week for a start ....lets try to be a normal person again... I forgot to allow for the fact that interferon and ribavirin are still being pumped into my body every day. The stark truth is that there is no half way, its a fallacy - like a mirage in the middle of the desert, it doesn't exist, there are 48 weeks and that's all. No wonder I felt disillusioned. The next 24 weeks are going to be just the same as the last 24 weeks and I shall continue to be "ill" for that length of time. Sleeping, reading, working a little, and not going anywhere in case I bump into germy people. Dammit.
The good news is that my tummy is 90% fine now (touch wood) and I am hoping to get back to walking the dog on a regular basis again, weather permitting.
I guess I am still feeling a bit "down in the dumps" but from what I've read, etc. its all perfectly normal and to be expected. Cancer patients often feel like this when they are on treatment and they call it "chemo-brain". Alot of people on tx think that hair loss is the worst side effect...... all I can say is they don't feel as bad as I do, lol! To me the mind numbing, boring-ness, this "can't be bothered" feeling is by far the worse side effect. I must try and remember that there is a purpose to all this and that is to eradicate the hep c virus. a year from now I will be waiting for the results of my svr (sustained viral response) and if I am undetectable at that point there is a good chance it has gone for good.
Today I am going to read the papers, feed and walk the dog. I might do a bit of work whilst its quiet in the office, otherwise I shall light the fire and snuggle up with a book. ST has gone fishing this morning, his mate matty fish fish collected him and brought me a bunch of flowers, that was a lovely surprise at 7.30am this morning and a nice start to the day.
A friend, on tx, has asked if I felt more tired nearer to the next injection time. I tend to feel tired all the time, and its definately getting worse, but I'm not sure it gets worse the nearer to Tuesday we get, so will have to moniter that. (The thought behind the question being that the body is starting to crave interferon - now that's a scary thought!) She is a few weeks further into tx than me so I've probably got that to look forward to at some point.
Shot 26 was fine and I slept my usual 12 hours. I still take two paracetamol two hours after the shot, to lessen any reaction that might kick in, but I have been lucky so far (touch wood). It's a beautiful crisp, cold sunny morning here today and I actually managed to take the dog for a walk - a bonus on a wednesday! I have also done a couple of hours work in the office and now I'm going to read the daily papers, have some lunch, do a bit of jigsaw and maybe watch a dvd this afternoon. If I don't keep out the office today I know I won't feel like doing anything tomorrow, so it is enforced rest today.
As regards side effects, my tummy is fine now, thank goodness (thought it was gonna go on forever!) My liver twinges sometimes. I've got so used to how I feel I can't tell what are sx's and what's normal anymore, lol! But I do keep a close check on them against how fellow heppies at the Forum are feeling, and its all pretty much normal, yuk!
I have recovered from being in the doldrums and am feeling much better in myself. I learnt how fragile the mind is, it would have been so easy to keep spiralling downwards, thank goodness I have my lovely family and friends all around me and a big thank you to them all for just being there. Estee is an absolute brick and he always manages to turn things around and make me laugh. Laughter is good medicine. There are snowdrops, violets and aconites out in the village and the daffodils are waiting to burst into flower, its a promise of the spring and summer to come.
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January 2008