So, we finally move into April and it is beginning to feel a bit more like spring. March was typical weather for March and April has started off showery, as it should. So much for global warming!
I'm doing ok I guess, just bumbling along with nothing new to report. The hole on my forehead seems to be responding to the fungal cream... I've been using it on my itches as well and it seems to have helped those so have had to order another tube today! I'm sleeping more and more every week - still going to bed around 8pm but now I'm struggling to get out of bed before 9am, so by the time I've got washed and dressed and had my brekkie its nearly lunch time. It will be interesting to see if there are any changes in my bloods this time, which might be contributing to the tiredness. I am back at the clinic next week for a review.
A big Happy Birthday to Lee today - have a great day! My granddaughter, Dizzy, doesn't often get a mention on here but she broke her arm this week and had to have an operation to fix it - right in the middle of her mock gcse's! She has broken/fractured or twisted one or other of her arms pretty much on a regular basis since she was born, so we were not surprised by this latest incident. Mum has lost count but thinks it could be Incident No. 8. Anyway, love and kisses to you DZ xx Whilst talking about grandchildren... my grandson went to Wembley last weekend to support Grimsby Town, along with his father and his father and uncles and cousins. Think he had a whale of a time even though his team didn't win.
I had some reflexology this morning and am sure that has helped - for a Wednesday I feel quite perky. Our organic veg box arrived this morning and there is a huge bunch of purple sprouting broccoli - my favourite.
A friend of mine from the forum has been in hospital last week. We share the same birthday and we started treatment the same week, so its nice to keep in touch and compare notes. She was in a lot of pain and her tummy swelled up, along with other awful symptoms. After lots of tests she has "sludge" in her gall bladder caused by the toxins left behind by the tx. This has only just developed so may well disappear after tx is over so she opted not to have an operation. One of her kidney's is also affected and she has to eat a very light diet and very small portions for the duration of her tx and stay on pain killers. I feel very lucky in comparison, but she swears she would rather have her problems than my fungal itches!!
We had to wait for an interminable length of time at the clinic this morning. My appointment was 10.25 and we didn't get seen until nearly 11.15. I could feel myself getting more and more short tempered as the minutes passed, sighing, and deep breaths, arms crossed, that sort of thing. Everybody seemed to come in the clinic after me yet get called through before me. Was that a touch of riba rage?? As it turned out I think Dr Sree had some problems with one of his patients because I eventually got to see a Dr Gosseal who is the guy in charge of infectious diseases.... Dr Sree is Gastroenterology, so I wonder why I haven't seen this other doctor before now? Anyway, he was very nice and we did a short synopsis of my tx, etc. I gave him a list of current side's which he read politely. He was more interested in my weight which over the 36 weeks has gone up and down like a yoyo. This week I had put on 3kgs but I think that was mainly down to having extra layers of clothes on to keep the cold out this morning - 1 pr socks, 1 pr thick tights, nix, 1 pr boots, 1 bra, 1 thermal vest, 1 thick woolley polo neck jumper, 1 heavy cord skirt, 1 bodywarmer and a scarf.
My bloods were down a bit this time and he said to be very careful of any bacterial infections and if I get a cough or a temperature to go straight to the doctors. Whilst its very hard to do, I think I do right by shutting myself away from the public at large as much as possible and try to keep myself safe. And eat loads of fruit. So we just continue on as we are until my next visit on the 13th May. He did say that at the end of my tx, i.e., on the 48th week I will have another pcr test and six months after that I will have an svr test. If that one proves "clear" then I can have a yearly check up and eventually they will discharge me altogether. Something to work towards. Something to make this tx worthwhile.
We bumped into Dr Sree on the way out and he asked if I had been referred to the dermatologist by my doctor yet. I said I hadn't but would go back tomorrow as the cream wasn't working as fast as I thought it should and he agreed. He did say that he thought it was unconnected to my tx and they would want to take a swab.
Apart from that I continue to itch and continue to have extreme tiredness, I am forgetful and hate to say it, but a bit grumpy sometimes as well.
12 weeks left! For the first time I feel a little stir of excitement that the end is in sight and I would dearly love to get that sustained viral response after 6 months - as much for my family and friends that have supported me as for myself. I've got things to do - two 10k's to run next summer, flabby bits to tighten up before then, a luxurious holiday to look forward to at christmas and miles and miles to walk to get fit. Somewhere I also have to fit in some fishing and try and get my golf game back into some sort of shape. My handicap will have lapsed.... I wonder if that means I have to start again off 45 handicap, that will be fun! I don't think they'll let me get away with that one!
It's time now for shot 36 so let me get it over with..... 12 left, yipppeeeeeeeeeeee!
I do wonder if I am in the grip of a riba rage. I woke up this morning very cross with our local doctor for not referring me to the specialist before now. So I have written a nice/strong letter to them insisting they refer me asap. Why should I sit in the surgery for an hour waiting and waiting over something that should have been dealt with before now. We will hand deliver it in a little while and see what happens. Could be an interesting day today!
11 weeks left. Getting there. I have a new ringtone for my mobile - The Final Countdown :-)
A couple of times this week I have found myself starting to plan ahead for when the tx is finished. Something I haven't felt able to do before. The thought of taking on commitments, work or otherwise, is something I just couldn't have contemplated a few weeks ago. It feels good. Apart from the ongoing and debilitating tiredness and the sore and itchy bits I'm doing ok, I think. I read somewhere that the ribavirin can also help to fix other bits of the body that might have been poorly..... excellent, I might come out the other end of this tx all shiny and new.
I drove to the supermarket last Friday for the weekly shop, that felt good to. As long as I go in the mornings before the tiredness hits and not on the 2-3 days following shot day, I will be fine.
I spent Saturday pottering in the garden getting my veg patch ready. We also put together a little cold frame to protect the seeds from the elements. Sis rang me on Sunday and she is keen to go to the garden centre this coming w/e, so that will be good.
So, shot 37 later today. I'm sure I've said before that some people use their thigh and some people inject into the tummy area - like a clock around the belly button. An awful lot of people have had trouble with extremely dry and sore areas and it turns out it is the alcohol swab they give you to sterilize the area with before you inject! So now they recommend that hospital soap stuff to wash the area instead, or some natural antiseptic wipes. Just something else these people can't get right!
260 days completed with 76 days left to go. Or 38 shots down, 10 left to go.... 5 per leg! (After this afternoon's shot, that is) Either way, its the final countdown and I for one couldn't be more pleased.
Estee thinks that at the end of of tx things will click back into place and I will become my old self and we will carry on as before, or perhaps that's wishful thinking on his part. I defy anyone to go through something like this and it not change them somehow. Hopefully it will make me a stronger person and a better person. But I've still got to get through the next 76 days first.
I have found myself becoming increasingly grumpy and getting cross very easily over the simplest of things. It seemed to start that day at the clinic and the slightest thing seems to trigger another "rage" Oh dear. It's not like anything I have ever felt before, everyone gets cross from time to time don't they... but this really is like a rage. Its kinda like knowing all your defenses are down and you can't do anything about it, the only defence left is your voice and its like using that to protect yourself from anything or anyone who might jeopardise your safety. I thought I had escaped the "riba-rage" but it would appear not! At least I know its normal to feel like this, ha ha. Otherwise I am feeling much the same with the tiredness, itching, headaches, dry skin, etc., etc.
Kate & I went to the garden centre at the weekend and bought a few herbaceous plants each and I also bought some rhubarb and seed compost. Today is the first warm day since when I might get around to planting them. In fact its far too nice to stay in and work in the office this afternoon so I shall give myself the afternoon off A shot of vitamin d is what I need! I worked very hard yesterday and managed to do the end of year wages online (thus saving us £75 taxation!) and then paid our April salaries, so I think its well deserved.
One or two people have commented this week that my hair looks thin and I look pale – hardly surprising really, I feel like I’ve been to hell and back!I didn’t see any hair on my pillow in the morning, didn’t see it disappear down the plug hole when I washed it nor did I see it nestling on my shoulders during the day, I can only assume those high winds we had a few days ago took it with them.Looking pale is because I am anaemic and all my blood counts are about as low as they dare to go, probably lower in some cases.A bit of make up and a hat and no-one will know the difference!!I am still getting headaches and am not sure if it is eye strain or the brighter days that are causing it.Again, it’s nothing that dark glasses won’t cure!They are all much easier to cope with than the fungal and bacterial infections I seem to suffer from.We are in the last few days of looking after our winter canine companion, so when he has gone I can hide in the garage and use my treadmill for exercise and no-one will see me.He had a bath the other day and he looks all fluffy and cuddly but is malting like mad.Dee will trim him up using the horse clippers no doubt– she doesn’t “do” malting in her home!They have a lovely vegan café not too far from them that do wonderful vegan meals and also do cheesecakes and carrot cake and other yummy foods…… I have put my order in so I think we shall eat well at the weekend.It will be lovely to have both daughters here at one time, it doesn’t happen very often – hope the weather is as good as it was last weekend!
I haven’t experienced any more riba-rages, thank goodness, but I have polished and oiled my treadmill just in case!This tx really is a strange one, such an odd mix of emotional highs and lows, ups and downs, and practically impossible to predict how you are going to feel.I feel as if I have had a bad week this week.Estee went fishing on Sunday and when I heard him come back I just burst into tears.I hadn’t felt too well all day with a bad stomach and a bad head, cold and shivery and I think I was just pleased to see him.I guess it’s good to go along with these emotions, its no good ignoring them and hoping they will go away because they don’t.Monday was also a bad day which is very unusual.Today I feel a little bit better but the stomach still churns and I have still got the aches and chills I had before.I have a tiny inkling it might be a bit my own fault ….. with the weather being so nice I bought us lots of salad foods to eat and of course they are on my list of banned foods, whoops.Nothing else raw for me – my immune system is so depleted it can’t cope with it. Ah well, back to the chips and roly poly tummy then.
I had my monthly blood test this morning but I don’t suppose I will get any results until I see Dr Sree at the clinic on the 13th May, they just don’t seem to get through to my local doctors like they should do, and I’m getting tired of fighting for them.
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A shot of vitamin d is what I need! I worked very hard yesterday and managed to do the end of year wages online (thus saving us £75 taxation!) and then paid our April salaries, so I think its well deserved.
January 2008