I have had a much better week this week and don’t think I had a “bad” day but neither did I have any “good” days, definitely better than last week though.I continue to get the head ache/eye ache and still haven’t made an optician’s appointment when I know I should do.I’m on countdown though, and I keep thinking it will get better in 8 weeks time which is very naughty of me when one of the complications of treatment can be detached retina’s.It’s such a battle with hospitals, doctors and everyone and I’m running out of energy for the fight.After my last clinic appointment Dr Gosshiel got the number of injections wrong, so I am one short to last me through until my next clinic appointment.I had to wait for the blood test results to come in before they would issue another prescription and then they had none in stock so I have had to wait – and wonder – when this injection will finally become available.Would it get here in time for my usual Tuesday evening injection?Well, I have just ring them and apparently it is their waiting for collection.No matter that this is a three hour round trip and it’s a working day AND I will be there again next Tuesday for my latest appointment and will probably have to go through the same rigmarole all over again.No wonder I’m tired of it all.It must be so frustrating to work in a hospital…. I couldn’t do it. (Lee collected my prescription for me and Estee collected it from her..... there was four injections and another box of ribarvirin, incredible!!
Apart from all that I have the usual array of side effects, but my itching doesn’t seem to be quite as bad and I’ve no idea why this should be.
I had the most wonderful weekend with both daughters visiting and their families.And my rose arch (chrissi present made by son-in-law and the weather finally allowed us to put it in place)is finally up and planted with some lovely pale pink roses ready to grow up it and smell delicious. It was great to catch up with Dee, wintering in Dubai seems to suit her!It’s the simple things like walking the dog together that is so nice.And the weather was wonderful, love this sunshine even if I do have to cover up with hats and sunglasses!The swallows have arrived from their winter quarters (bit like Dee coming back from Dubai!!) and the cuckoo is about.
I have learnt to fall asleep listening to the bird song around 8pm every night.Seems a bit odd to be in bed in the daylight but I need my twelve hours.
I have been and had a thorough check up with the Optician this morning and am pleased to report that my eyes are healthy. It was £20 for the eye test and an extra £10 to be tested for diabetes, glaucoma, hypertension and macular degeneration. I had a photo taken of each eye and he showed me which was the back of the eye and the healthy looking veins, etc. that come out from there. Best of all my eyes have hardly changed since my last eye test, so I feel very reassured by all this. The puffiness and the headaches could be down to some allergy/pollen and I got some dry eye drops to help keep my eyes moisturised. I'm really glad I went - it is a big worry off my mind to know that one bit of me at least is fairly normal! Thanks to Lee for taking me xx
The day after my last blog entry I woke up with my right eye all puffed up, red and swollen and later that day the left one started to do the same, hence my concern that something was wrong. The uv rays from the sun can also have a detrimental effect on people doing treatment with skin blistering not unheard of and some people even have to stop having tx. I was hoping to fish this weekend but now the weather has got too hot , how could I keep cool when I have to cover everything up? I need one of those outfits the asian ladies wear, that would be perfect wouldn't it..... might look a bit odd down at our local fishing lake though.
It was my penultimate clinic appointment with Dr Sree this morning. A tuesday daytime is when I can hope to be feeling at my best - its when I forget all the niggly little sx's that go with the treatment, so probably not the best day to see him if he wants a true picture of my health! I noticed my memory was particularly bad today - twice I forgot what I was saying to him! He has prescribed my final meds - unfotunately the Pharmacy didn't have them in stock so I shall have to go back sometime to collect them - so when they are gone that is that and I'm hoping my sharps box has enough room left in it to put these last few pens in. I have a blood test on the 27th May and 23rd June followed by my final clinic appointment on the 24th June. I have another blood test immediately treatment finishes to see if I am still undetectable and another one six months later which is the important one and is called an SVR (sustained viral response) If that is undetectable then I have just a 1% chance of the virus coming back. If all that happens then my next priority will be to keep myself as safe as possible from a risk of re-infection. No way am I going through this lot ever again!! I will also get an appointment through for an ultrsound scan on my liver at some point before this last clinic appointment. Thereafter I shall have to them every six months to check on the cirrhosis.
Week 41, 7 more to go. I had an email this morning from a fellow hepper in Yorkshire and she likened these last few weeks to being like the last few steps of a marathon. She says she's not sure if these last few weeks feel harder because the finishing line is in sight... you become more acutely aware of each and every step of the way. I think that is very true. My last shot is Tuesday, 1st July and my last pills will be swallowed around 5.30pm on Monday 7th July. You might find that last statement repeated more than once on this blog from now on.
It would be unforgiveable of me not to mention that Estee won his fishing match this Sunday just gone, well done you! I spent the morning gardening... most of my vegetables are through now and need potting on. I'm taking particular care of my purple sprouting brocolli because every year something awful seems to happen to it. If its not the pheasants or slugs eating it then its big feet crushing it to death. I think I've cracked it this year though .... I have cut some 2lt water bottles in half and shall keep the plants safe under them until they are big enough to look after themselves. I shall also surround them with bamboo poles and shiny cd discs to keep any birds away.
42 shots done and six more shots to go.... I'm sure Estee is more excited that this treatment is coming to an end than I am, which just goes to show how tough it has been on us both. He is counting it in fishing matches and I am counting in shots left.
It has been an uneventful week in most respects. I continue to have the niggly sx's and my headaches seem to be under control as long as I stay out of the sun and keep covered up with hats and sunglasses. I seem to get very tired very easily. On Saturday I just pottered about in the garden, trimming my box shapes and doing a bit of watering and then on Sunday I had to go to bed for the afternoon. All this lovely May weather and I'm too tired to enjoy it. Usually I would feel tired for one or two days but now it seems to last 4-5 days. I have done very little in respect of office work these last few weeks, it all seems like very hard work and I can't quite manage to get my brain in gear to deal with things that crop up. It's the tiredness and the brain fog - how can you talk to a client when you forget half way through a sentence what you were meant to be saying?
Did anyone realise it was World Hepatitis Awareness Day yesterday? Did you see it in the newspapers, hear it on the radio, get given paperwork at your local surgery, or see it on the television? Probably not. But an awful lot of people were very busy promoting the illness all over the world. I would like to have done more than just promote it here on my blog, but alas I haven't got the energy. I hope to do some kind of fundraising when I'm "better and fitter". If anyone has learnt about hep c from my blog and would like a hep c aware badge then you will find the email address on the home page or I can order a few... they are £1 each. Spread the word, the more aware everyone is so much the better.
Roll on next week when we will be down to shot 43 with 5 left to go.
I'm a bit late filling in my blog this week because I have been feeling too tired to do much at all. The day after my shot I have no energy at all - it feels a bit like what I imagine being poisoned must feel like; lethargic, no energy, constant thirst, headache, nauseous, no appetite with a need to lay down and sleep in a darkened room..... just "ill" in every sense of the word. Actually, its just the same as I've felt for the last 43 weeks, but it seems to be getting worse, much worse! I'm down to counting the days now - 39 left to go, sounds like music to my ears! It is almost June and there is a lot going on in June so it should pass quickly.
Tomorrow I have an ultrasound scan on my liver - expect to get results of that on the 24th June at my next clinic appoiontment.
So there is very little to write about this week and very little work getting done on my side of the office..............
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January 2008