I am aware that having got so far into tx I am in danger of repeating myself and getting boring... every day is the same from where I am... which doesn't make for a very lively blog. I've always said the boredom is the hardest thing, just like if I wrote the same thing in my blog everyday... that's what its like and how it feels.
I have had my hair cut short now, very short like an urchin cut and its great - wash n go. I can't tell if its falling out or not now, great!
I have spent a fortune whilst on tx, buying books to read. So now I am joining our local mobile library. It comes once a fortnight and is due next Tuesday, so that is something to look forward to.
My weight is stable, my diet atrocious - I ate healthier before tx! Our organic fruit and veggie box is due today so maybe that will inspire me to make something healthy - I know what will happen though .... "can't be bothered"
Any sx's are bearable and really I shouldn't complain. If nothing else this tx is giving my liver a rest.
It takes about six months to detox all the chemicals out of your body when tx is finished. The interferon goes pretty quickly but the rotten riba's hang about forever! I am wondering that if I manage to get rid of the virus whether the cirrhosis will prevent me from playing golf again, or power walking. Will I ever have that much energy again? But that is too far away to contemplate at the moment.
So 27 shots down now with 21 more to go (big sigh, no comment)
It is my youngest daughter's birthday tomorrow so a great big happy birthday Dee with loads of hugs n kisses from me and estee and fudge (carrot cake!) Hope you have a super day and be careful in them high boots!!
I am writing this early morning (yep, 8.30am is early these days!!) and I'm going to make a healthy smoothie with cranberries, blueberries, pineapple, cherry juice and goji berries. Later I will have some toast and marmalade and the riba's.
It is notoriously difficult to get copies of blood tests, etc. out of the hospital. So right at the beginning of my diagnosis I wrote a letter requesting copies of all correspondence, notes and test results for a nominal fee - anyone can do this and get copies of their notes. I had forgotten all about this until yesterday when a big envelope came through the post for me from the hospital.
One item is a long letter written by Dr Sree to Dr O last May, and is basically bringing Dr O up to date with what is happening at that point in time. Here is a short paragraph from that letter:
"There is no family history of liver disease. She is a vegan and also takes a wheat-free diet. she is a mother of 3 children who lives with her husband and runs an intimate business from home"
OMG can you believe that?? My reputation around the hospital is in tatters!! Estee now seriously wonders what I do on my day off! For those who don't know what we do for a living perhaps I should enlighten you, but why spoil the fun!
So far I have also learnt that I have a small hiatus hernia in the oesophagus - nobody told me about that!
I continue to make progress with my hepc healing journey, 189 days into it, amazing, and ONLY 147 more days to go before I can start to detox these cruel chemicals out my system. 28 shots down and 20 more to go ...it's like I can just see a faint glimmer that is the light at the end of the tunnel. Next week we are in the "teens" and then we will be down to single figures, YES we are getting there, yahoo! My diet gets worse though and my weight is soaring upwards at a rate of knots. I'm not by myself though, I have read of other people having similar experiences with their appetite.
I have had a few headaches this week and think I shall have my eyesight checked as I know this can change during tx, it will eliminate it if nothing else. (It's probably an overdose of sugar and my brain isn't used to it!)
I have bought so many books whilst on tx I have finally, today, got around to joining our local mobile library. They come around once a fortnight and I can have up to 30 books! When I got there the step was upturned and they were both digging into sticky buns and cups of coffee..... obviously they do not have many customers in our village. They also have talking books but I haven't got on too well with those, usually falling asleep and missing half the story.
I must put the record straight now regarding what estee and I do for a living. I have been inundated with requests for catalogues and all sorts of other things. If anyone has done shorthand they will know that the outline for intimate and internet are very similar..... we sell trees, shrubs, hedging, leylandii, etc. and have also been asked how to trim hiatus hernia's in the oesophagus, so its a very interesting occupation. And I hope that sets the record straight with the staff at my hospital, although I might wear dark glasses and a big hat just in case next time I'm there.
I managed to do quite a bit of gardening on Saturday, wrapped up against the cold, and on Sunday spent most of the day in the armchair recovering. I ached in all kinds of peculiar places.
Today we had a meeting with our IT guy and have been discussing ways of becoming a paperless office, amongst other stuff. If Emirates airline can be 95% paper free I'm sure we can give it a go!
I was doing so well and then out of the blue on Wednesday I felt overcome with tiredness and I had to go and lay down. I felt shivery and achey and slept from 10am-2.30pm. Thursday and Friday I didn't feel quite so tired but I was quite irritable and best left alone. And Friday I was quite tearful for no specific reason. Today I am feeling more like how I usually feel on tx. It will make me appreciate a good day - when I have one! If it wasn't for the forum I think I would wonder if I was going mad a lot of the time and I would certainly worry about my side effects more, so it is very reassuring to know that how I feel is "normal" for a heppie on tx. Some people don't get many sides at all and some people suffer an awful lot more... I seem to be somewhere in the middle.
Estee has gone fishing - unbelievable, its only 6oC and white over with frost out there! So I might make a veggie stew for tea and a nice warming steamed pud. How I wish I could just hop in the car and pop into town and do a bit of shopping and pick up the groceries on the way home and have enough energy left to light the fire and cook the veggie stew and steamed pud. Saturday's used to be about golf and now they are about finding enough energy to just get through the day!
Later the same day.........
My wish was granted and an angel appeared on my doorstep and took me shopping. I went to the chemist, the cleaners, the post office, the bank and the supermarket and got all our supplies for the week. How kind and lovely was that! A great big THANK YOU to you xxxxx
I remember when I first started on tx and was busy logging every side effect, headache, palpitation or whatever and looking at the forum and seeing people writing in at week 29 and wondering how on earth they managed to last as long as that on treatment with all that they were suffering. They were veterans, people to look up and listen to and I was in awe of them. These people will have completed 48 weeks or be carrying on to do a 72 week stint (ouch) now but they are still members of the forum and still write in, cheering up the newcomers, offering advice to anyone with problems and just generally sharing their experiences. It is a very close knit community and I have made some good friends that, in the normal run of life, I would never have known. It's not just heppies - people who suffer from cystic fibrosis, for instance, also have their own forums as do cancer patients. A great big network of people helping each other
Well, I don't feel very brave after completing 29 weeks all I want to do is get to week 48 and get it over with.... I have started to have vivid dreams, not every night but once or twice a week and they arn't very nice. I've also got terrible "itches" ... on my legs, tummy, sides, arms and I could scratch them raw they are that bad. Piriton is supposed to help, as are creams, but they only give temporary relief. It just seems to be the next stage I've reached.
I didn't feel too tired this morning considering it's Wednesday, so estee and I popped off to the supermarket and got stocked up for the next month. I found a lovely rye bread with raisins but no yeast, its delicious with a spot of soya margarine on it. And some lovely spelt biscuits with ginger and walnuts.
I rang the hospital yesterday to try and get to know if my pcr results were through but Dr Sree's secretary is away on annual leave until next week and I don't want to speak to Dr Sree really, so will have to be patient until next week when I got to see him.
I had a letter from Dr Sree this morning giving me the result of my 24 week pcr - yep, it was undetectable, which will stand me in good stead for the rest of my tx. But it is still the one year post tx test that really counts. My good news arrived the day after a friend of mine received bad news. She is detectable at 36 weeks. She has never had an und and her alt's and ast's were rising so she has called it a day. I don't blame her, I would have done the same in her position. She will now have to wait for a new treatment to come along (I think its the VX950 everyone is waiting for, but my memory is bad today) I cannot imagine how she must feel to have completed 39 weeks tx undergoing all the sx, etc that go with tx and having to visit the hospital on a weekly basis must have been so draining on already limited energy levels. But she's a tough scots lassie, very brave, and I hope she will get the chance of another round of tx. A virtual hug to you IJMcC. Keep in touch.
My itches continue to itch and drive me nuts, the antihistamines do help a bit, but I didn't sleep very well last night because of all the itchiness. I am tired tonight after all the itching kept me awake last night, so might have to have an early night tonight (ha ha!).
I had a very quiet weekend spent reading and doing my jigsaw and not much else. I feel better today for having rested up.
I had my bloods taken yesterday and today was my appointment with Dr Sree at the clinic. I told him about my terrible itches and he told me to use an emollient cream to help with that. He is going to refer me to a dermatologist with the sore place on my forehead. I had gained 3kgs at the weigh in, which didn't surprise me the way my appetite has been these last couple of weeks. He said not to worry about it, so I won't. My bloods are more or less the same as they have been since week 12 so Dr Sree has put me on monthly blood tests and my next clinic appointment is 8th April, another six weeks away. We waited half an hour for my prescription only to be told they had no peginterferon. As I have no spares I definately need one for tonight. She managed to catch the late delivery which means I have to go back after 4pm to collect them. Lee lives half way to the hospital so she kindly offered to collect them for me and then Estee will collect them from Lee's house after that.......nearly one and a half days day taken up with the hospital and its only Tuesday afternoon!
Did anyone else get shaken out of bed at 1am last night? We were woken by all the wardrobe doors rattling like something demented. At first we thought it might be a big plane in trouble, but the rumble was too big and too deep, it could only have been an earthquake. The 10 seconds it lasted seemed to last for ages. Definately a scary moment and my grandson slept right through it, unbelievable!
I never got to have my 30th shot last night after all. When I opened the bag of tricks the box was a different colour (red instead of green) and a different strength. Of course everyone had gone home for the evening so I had to wait until this morning to sort it out. In the meantime I had done a mathmatical calculation and thought I would need to take all the contents of the pen and not .3 like I usually do. Turns out I was right, so I'm not completely fogged up just yet. So I have taken it about an hour ago and my leg all puffed so, so whether I have inadvertently caught a vein I don't know. Hope not cos it loses its alot of its healing power if not done right.
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(carrot cake!) Hope you have a super day and be careful in them high boots!!
January 2008