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Tink's journey with Hepatitis C

Wednesday, March 23, 2005

Fly Me High

Dear Friends & Bloggers,
I am writing to say a huge thank you to you all. I am off tomorrow to catch some sunshine in the Canary Islands and I’m in the midst of deciding what or more importantly, what not to take with me. So I have been trying stuff on and parading in front of the mirror (checking on whether the bum sticks out too much) and I have to say I look the epitome of good heath. I am simply oozing and spilling over with good thoughts and radiance. Now a lot of this has to do with the fact that I had a spray tan this morning. I am very fair so I usually look whiter than paper and here I am, simply glowing (and the bum looks just right too!) You would never guess that there is anything in the world wrong with me. And, you know what, I feel like that on the inside too! When I started this Blog just a short time ago, I was newly diagnosed and in a state of despair. I felt so cut off from the world, so different from everybody else in the street and tainted – as if I was a leper. I was also very angry. I simply could not comprehend why something like this should have happened to me. Why a straight forward operation, some 23 years ago, should land me in this mess. I really did struggle to come to terms with it. At first, absolutely refusing point blank to even hear about the toxic treatment that was on offer. I could not even bring myself to read the articles on the internet that were being pointed out to me by Andrew – I would start to read them and then feel terrified at what I was seeing. Andrew phoned the HepC Support group, not me. I went about my normal life in total denial – I even continued to drink wine with dinner. Slowly, the truth began to dawn and I took control of my virus which included changing my diet and giving up alcohol. I spent hours on the internet and it helped me so much. I knew the questions to ask my local Consultant – basic stuff really, like “what type do I have” and “what is my viral load”. I was totally disheartened by the local NHS team – I don’t suppose I can fully blame them as they are not so exposed to this kind of thing and it’s all only just starting to happen here. Anyway, they could not answer my questions and were quite happy to send me off across the Irish Sea to Liverpool for both treatment and support which I thought was abysmal. I'm now being looked after by a wonderful Liver specialist in London who treats me like a human being. It was during this turmoil that I started my Blog and this is why I have to thank you all. From that moment on, I was no longer alone. All my silly little questions were answered, my niggly concerns quashed and best of all, it generated a feeling of genuine warmth and caring. I start my treatment in 11 days time and I know I have the best team in the world looking out for me. I would not be standing here oozing radiance inside and out today if it were not for you. Thank you all so very much!

Dad has been appointed chief cook and cat dish washer. Friends are moving in to keep a watchful eye over ‘things’ so I can happily wave goodbye to you all and spend the next week soaking up the sunshine without a care in the world (well, hardly……)

Monday, March 21, 2005

Monday, Monday..it's good to see...

I have woken up to the sound of the fog horn in the bay. Before even opening the bedroom curtains I know we will be enveloped in a cloak of sea mist. They call it Manannan’s Cloak – a mystical mist that surrounds the island from time to time and prevents the English crown from taking it back. It is especially annoying when I hear the Beeb telling me how sunny it is in England…..

Two weeks today I will be preparing myself mentally for the flight to London and my first jab but today I am more concerned with the job at hand and that’s digging through cupboards to find my summer gear….not something I’ve needed to do here so far this year. We are going to the Canary Islands on Thursday morning for a week of R & R courtesy of our dear friends Angela and David. The timing couldn’t be more perfect as it will hopefully divert my attention….

It’s a busy 3 day week of doing girly girl stuff...nails, hair, wax and tan spray (I’m the only person I know who comes back from a sunny holiday looking paler than when they went..) and I’m going to enjoy every minute of it.

Saturday, March 19, 2005

Friday night blues

I cried last night – big tears of frustration and a few wimpy self pity tears too without doubt.
I spent a busy Friday catching up with individual friends in town bringing them up to speed and arranging cover for dad when we’re away at Easter. I had eaten my normal healthy breakfast and late morning a toasted tea cake had crept in so that when lunch came around I wasn’t hungry. Big mistake! By late afternoon I was feeling quite uncomfortable and spent the next few hours with bad stomach pains. Anyway, I got that sorted and then the ache started. I’ve noticed it quite a lot this week actually. It’s in the right quadrant of my body and comes in waves. It moves around too. One wave might be in the shoulder blade and the next will be in my breast. The waves kept coming….
Andrew was at a business function and I tried to occupy my mind by playing bridge on the internet. It got to be very late and no sign of Andrew and before I knew it I was sobbing into my laptop. What a stupid twit – I should have just taken a paracetemol and that would have been that but I got myself into a state. Afterwards, when Andrew had come home and I had taken the fix-it pill, I could see how stupid I had been. I have been reading Paul and Jonathan’s blogs and now I know I need to make a plan of how I am going to fix things when they start to go wrong. It looks so easy as I sit and write this but last night I thought I was doomed….

Wednesday, March 16, 2005

The fog returns

It’s been a whole week since I posted anything. I feel as if I’ve spent the week in a vacuum. Andrew’s been away since last Friday and although my dad lives with us, it has felt as though I’ve been on my own. It gave me the chance to do exactly what I wanted to do and, unfortunately, that was nothing….nothing at all. I have felt a bit like the guy Tommy who Ron wrote about on Week 18 Monday – remote. I did look after myself; showered, shopped and cooked but just as soon as I could I fled back to my bedroom where I stayed for many many hours. It felt safe. I had several evening excursions arranged with friends but ended up cancelling them with the excuse of bad weather – just so that I could stay in safety of my own cacoon.

I have questioned myself, why? I thrive on company and normally jump at the chance to meet up with friends. I am a bit bored hearing myself talking about me and my HepC – perhaps I am worrying that it is taking over my life. I have noticed that I don’t think about much else! Perhaps when I have started treatment and got myself sorted I will start a new project – learn Spanish or something – anything really to give the brain an alternative topic on which to thrive.

I felt especially hungry yesterday – even after my huge bowl of Mung Bean Stew. Professor Foster had warned me about weight loss during treatment and said that now was the time to – can’t remember his exact words but something like ‘beef’ up. I am eating very very healthily – no ‘bad’ stuff at all – and my weight remains the same. Strange that, because in previous years I would have called this a diet and weight would have dropped off almost daily. Whilst I am not losing weight, I am changing shape. I’ve noticed that I can hardly pinch an inch which is a bit of a worry because I need something to grab hold of to stick the needle into. Anyway, after all that, I made myself a slice of toast and peanut butter……that put the smile back on my face!

Wednesday, March 09, 2005

The fog lifts

I went along to see my GP on Monday morning. I needed to get him 'on side' because he'll be the person looking after me and my side effects. I explained to him about my feelings of being let down by the local Consultant (after 6 months under his care I had still not known what type or viral load I had). I did not have to worry as Prof Foster had already written him a letter - my GP laughed and said he knew more about HepC from the 2 page letter than he ever knew before. He readily agreed to work hand in hand with the Professor who will be prescribing whatever I need and my GP will do the facilitating. Just as I was about to leave he remarked that there were several other people in the practice that had been diagnnosed with HepC. I told him that I was planning to write an article about it and have it published in the local paper (I'll most likely do this after I've started tx)and that perhaps this would enable us to start a local support group. He commented on the stigma element and said, "You are very brave". I don't think that I'm brave at all - I'm just doing what I have to do.

Tuesday Morning
I woke up early and felt bored. I played a few games on my computer (I'm into Internet Mahjong at the moment)but got bored with that too. I spent some time faffing around making myself presentable but then decided to attack the study. It had looked a right mess since Xmas and it was nigh on impossible trying to put your hand on anything required. By the time I had finished you could see the desktop. I had entered all those updated bits of info into my Palm and backed it up on the laptop, made phone calls to organise electricians and carpet layers and had organised flights for later in the year. I was my very organised old self. And, I wasn't tired. My burst of energy carried through - no afternoon nap for me - what a sheer delight to feel normal. I made dinner for the three of us and read and watched some TV and I finally went to bed at about 11pm. The fog and the lethargy had lifted - I had forgotten how it felt to feel this good!

Wednesday Morning
I woke up wandering about yesterday - could it have been down to the Mung Bean Soup? Well, I have modified it a bit and now it's Mung Bean Stew - I found the recipe on the net and will post it if anyone is interested. I have been eating quite alot of it!
Perhaps not, because this morning I have woken up feeling tired. Oh well, it was great whilst it lasted. Too bad it couldn't have stuck around a bit longer - I play Bridge today.

Sunday, March 06, 2005


On Saturday, Andrew and his work colleagues had planned one of these ‘team building’ events at the Go Kart track and I went along to watch. It was a nice sunny day and everyone had a lot of fun. Andrew was really chuffed as his team won and he, personally, had managed the best lap time. He’s always fancied himself as a little ‘Schumi’. We went for lunch and I managed to get a very nice tuna salad followed by strawberries so not too much strain put on the old liver. When we got home I was feeling so tired that I went straight to bed and fell asleep. It was pure chance that I got woken – prematurely, it felt – at 7:30pm. I could have slept straight through until morning, I’m sure.

Am I feeling so tired because my body is fighting the virus on other fronts? If this is the case, then I’m sure the body, if the not brain, will be delighted to see reinforcements in the form of tx in 4 weeks time. Without doubt, I would prefer to have reinforcements in the shape of a laser guided missile but guess I’m stuck with the bows and arrows!

Today is Mother’s Day and we are meeting friends for lunch. I received a very nice card from our god daughter and another one from the cats – thank you OJ and Jordan!

Friday, March 04, 2005


My trek to the outer reaches of this outpost proved successful! I returned to base armed with both mung and aduki beans and left them to soak.

Next day….
I have just finished eating my bowl of delicious soup and now can hardly move. It does look a bit yukky but it belied the taste. I added a few extra ingredients like green chilli pepper and hing (helps to prevent bloating etc!!) but forgot to take out the bay leaf before blitzing so it does feel like I’ve got a bit of the privet hedge stuck down my throat at the moment. Never mind, I’ll get it right next time….

I also completed two other bits of prep in that I have organised a counsellor to act as a sounding board, as and when I need it and she suggested a masseuse to bully out the lazy toxins and also a meditation class to fulfil my spiritual needs. I also booked an appointment with my GP for Monday as he needs to know about my tx and hopefully he’ll agree to ‘co-operate’ with my Liver Specialist who’s in London. It feels as though I’m going on Safari.

I also treated myself to a new gadget – a new pair of bathroom scales that tell you not only your weight but also your fat and water ratio. All the readings confirmed I’m in good shape. It will be interesting to see how much the water ratio changes as I consume more – I’m kind of building up at the moment. I spend so much time in the bathroom these days that heaven knows how I’m going to cope with taking on more liquid. I took Jonathan’s advice too and started on the Vitamin C. So, I look and feel pretty healthy – you would never know what lies beneath the covers!

I did wake up this morning feeling ‘very low’ and after eating my muesli, actually went back to bed. I wouldn’t exactly call it depression but it was going that way. Fortunately, a friend called and dragged me out for coffee (decaf) and I was right as rain after that. It’s Friday afternoon, the sun in shining and I’m back in very good spirits.

Thursday, March 03, 2005

Letting off Steam

It’s very early in the morning and here I am pouring my heart out into my laptop. I received a reply to an email I had sent to a family member yesterday. I had disclosed all that is going on in my life and got a very non-empathetic reply. Normally, I would have written back and given a piece of my mind. But yesterday, I had spent some time reading the histories of the staff at the HepC Trust (as suggested by Ron Week 16 – Monday- The Trust) and what wonderful reading it made. I was quite moved by the last paragraph in Jane’s biog …”Having hepatitis C has been an enormous learning curve for Jane, which has turned it into a hugely positive thing. In fact, she feels that having hepatitis C actually enhanced her life as it led her in directions she may have never otherwise have gone and which ultimately led her to discover what is really important… 'It was a door to discovering how to live!" it must have had some impact on me because I did not write back to the cruel email. I will save my Rage for something more worthwhile!

I am learning to check myself. All these newly discovered symptoms that are turning me into a monster have to be controlled somehow. I don’t understand why I have them when I’m not yet even on treatment and yet I know they are real – I’ve been having them for months – way before I discovered that I’m a hepper. The irritability, the paranoia, the rage….. they are all there and I do have to watch myself carefully. I nearly went beserk yesterday at Bridge when someone said I had marked up the ‘leader’ incorrectly. I had to pull on the reins sharply…..deep breath…..smile…..

Today’s project is to find the Mung and Aduki beans – as recommended in Jonathan's & Wendy’s Blogs. I can’t say I have ever seen them around in the local supermarkets but there is a very good health food shop at the other end of the island which sells all sorts of weird and wonderful things so I shall try there. Failing that I have found a UK Website that will mail them http://www.herbsbypost.net/. I thought about modifying your recipe Jonathan by adding some hot red/green peppers – I have a similar recipe for Red Lentil Soup and I could eat it until the cows come home. Now please don’t write and tell me that I can’t have hot peppers! One by one, I’m finding all the delights in my life being taken away. PLEASE PLEASE don’t tell me I have to eat bland food.

Tuesday, March 01, 2005

I'm not alone

I'm sitting here looking out to sea and all I can see are gulls, waves and the odd ferry. You can feel quite cut-off when you live on an island and I suppose that's how I felt when I was diagnosed with HepC. I felt quite alone even in the room full of people. It wasn't made any easier by the local Consultant who broke the 'bad' news - he mentioned the stigma attached to the virus (hate to call it a disease...)and said that I would probably be better off not telling anyone.It made me feel unreal. I felt utterly cut-off from real life, from my family and friends, from everyone else in life. It makes me wonder how other Heppers are coping here......

All I can say is thank goodness there are wonderful Bloggers out there who have helped me in one way or another realise that I am a real person again, living in the real world. I would never have considered having treatment without reading about their journeys and their various hurdles and how they overcame them. Thank You!

It really goes against every grain in my body to keep this a big secret. I can't pussy foot around trying to pretend that I'm the same 'all singing, all dancing' full of vim and vigour person who now goes around with a paper bag on her head and doesn't drink anymore. I have told one or two close friends and I expect I shall 'come clean' before I start my treatment - perhaps even do a newspaper article on it. Maybe that way, it will help establish some sort of local support group.Don't know though....sounds a bit scary!