Tink's journey with Hepatitis C

Feeling Great!

2006-07-06T00:46:00.000+01:00

The end of a journey

2006-07-05T23:59:00.000+01:00

It has taken me about an hour to logon this evening - yes, I still have the remnants of fog-brain and could not remember my id or password. I persevered though as I wanted to write an 'ending' to my Blog. I have completed one hell of an interesting journey and how could I close the book on this part of my life without sharing my good news. I cried my socks off when both my GP and the Prof phoned to say that I am clear of HepC. I was told at the beginning that I only had about 55% chance of getting rid of it and this just made me more determined to be so so focused on just working through it. I was a total bore to myself and everyone around me for 48 long weeks but I stuck to the regimen - I took the poison on time - never missed a dose -I tried to eat properly - I drank water. Mainly I slept.

Here I am, 5 months since finishing the treatment and I feel great! I had my post tx tests at 3 months and 4 months (I don't think I could believe it the first time so had it done again just in case.....)and I will have it done again in September to get the final clearance.

It wasn't easy on me and it was no holiday for my husband, my father or even my friends. We all took a beating. The great thing is that they stuck by me (big hug and kisses to you all) and here I am thinking how bloody lucky I am to be alive.

The massive dose of chemicals has left me with Candida so sugar and yeast in any form have gone out of the window for the time being - small price to pay! All the other chemo-related symptoms have gone. I have energy, I don't feel sick, I can walk and breathe, I have a sense of humour and miracle upon miracle, no rage!!! ..... I feel 'normal' and it feels wonderful to be 'me' again.

Thank you everyone for all your support - I hope there's a rainbow at the end of your journey too.
love
Tink

Meeting with the Professor

2005-12-15T08:36:00.000Z

I flew to London last Sunday and spent 3 days shopping and catching up with old friends. The real purpose for the visit was to see Professor Foster. My red blood cell count is way down at 8.9 (the lowest it's ever been). He said that if it went lower than 8 I would have to stop tx! We did discuss this option but I am so determined to battle on - it seems such a crime to stop now when I am so close to the finishing post. The conclusion was to lower my Ribs dosage to 800 mg and hope that my red blood count comes back up in time for me to fly off to some sunshine in January. He also mentioned lots of other medication to help me through the worst of the side effects but I declined. I am not being a martyr, I just hate the thought of yet more drugs swilling around my system. My digestive system is beginning to show signs of strain and so, no, I can't take any more than I absolutely have to.

At the end of 3 days in London I was in a very sorry state - I guess I am just not used to all that socialising or shopping! I got off the plane at this end and could not even drive the car. What a sorry state of affairs.....

My next appointment with Professor Foster is not until next May when I will have completed tx for 3 months and will have the PCR test to confirm whether or not I am still clear. I am so close to to the finish post now I can taste it!

Only 12 more to go...

2005-12-05T13:07:00.000Z

I've now had 3 lots of 3 hour massages and I am definitely feeling the benefit. I should have organised them a while ago but never got around to it - silly me.

So my main complaint is the depression. My 'feeling low' has gradually become far less manageable and there's no hiding the fact that it is actually real depression that I'm feeling.

I used to wake up feeling so joyful and full of life and now I'm even screaming at the cat if it as much as purrs in my ear. I usually have my blackest thoughts in the middle of the night when I have to get up to go to the loo. I go back to sleep but have depressing dreams and always wake up feeling the weight of the world on me. Professor Foster encouraged me right from the beginning to take anti-depressants if they were required. I have not taken them because I hate the thought of putting yet more chemicals inside me and also, on a normal day I am quite a compulsive/addictive person and the last thing I want is to get addicted to anti-depressants.

To be honest, it's only been this past month that I felt the full impact of the depression and some of that could have been something to do with the pain and nausea I've been experiencing. This time of year hardly helps too.....

On a more positive note, I have managed to play bridge at least twice a week and in fact, I am off to play now. I can't think of a better way of spending a wet and windy afternoon and you never know, I might even get a decent score and that would certainly cheer me up!
Must run... bye

35 down.....

2005-11-29T16:06:00.000Z

...and yes, I am counting! I think I'll get really excited when I can start the countdown at 10 weeks to go - I might even be 'demob' happy at Xmas time.

I had another 2 1/2 hrs of massage last Thurs and I think it's helping as I've just had 2 days without painkillers. The good thing about the pain is that it's hard to remember it when you are feeling ok. The bad days come and go and so I just have to make the most of good ones. It's strange that the unwell feeling comes about so quickly and without warning. I was up and about on Saturday morning and suddenly, I felt so sick that I had to go to bed and I stayed there for the remainder of the day - even sleeping for most of it.

But today I am in good form and even my friends commented on how 'bouncy' I seemed this morning. I had lunch out and here I am still feeling ok. The temptation now, of course, is to go into overdrive and try and catch up with some of the stuff that I've pushed aside but hey ho, I shall just relax and enjoy this delicious bit of respite.

For me anyway, it's been important to put aside any sort of 'issue'. I have a couple of them lurking in the background somewhere but I have totally refused to let them get a hold. If I even get a whiff of a problem, my trap door comes down and rescues me. This is totally opposite to my normal way of dealing with anything - I have always been face-on. Strange change of character but comforting and most welcome!

The sun is setting and there's not a single cloud over the island which means we are in for a cold night. Time and (miraculously) energy to bring in a few logs and light that fire.....
bye

Another bad week

2005-11-21T15:10:00.000Z

It is 3 o'clock in the afternoon and I am lying in bed with my hot water bottle feeling very sorry for myself. The sun is shining and I am lying here looking out at a very calm sea. I feel quite 'down' and I don't know why.

I met friends for coffee this morning and had a good long chat - I even made a new friend (funny how you just suddenly meet someone and instantly get along.....?) I should be feeling quite positive as I've only 13 more jabs to go after today. Thirteen sounds so close to being finished with this stuff - it can't go fast enough. I think I am feeling so down because I am so fed up with not feeling right. I am having to take pain killers daily and now my stomach feels quite nauseaus and my head feels groggy - how on earth I managed to get through the first 7 seven months without any of this is amazing.

I did find myself a sports masseuse who came along to my house last Tuesday. He spent 3 hours massaging - he said I had the Himalayas on my back! A 3 hr massage - it sounds idyllic but I can tell you it was 3 hours of pure hell and agony. The good news was that I felt like a rag doll afterwards and didn't have to take pain killers for 2 days. He's coming again on Thursday and I can hardly wait - masochistic or what?

I read some of the comments on my Blog today and I want to thank you all for taking the time to write - your encouragement does help. I stay in touch with the little band of other heppers here on the Island - it's just great having people around who understand exactly what you are going through, although there are times when I tire of hearing myself rabbiting on and on about my plight. I don't feel sorry for myself, I am just fed up with feeling unwell.

My Riba rage continues... I am the most intolerant person I know. I take on strangers, department stores, government, whatever... I know I am doing it but can't stop myself. I can hear my dad apologising quietly so I know I've overstepped the mark. And then I 'stalk' off - well, more of a quiet hobble really - my 86 year old father walks faster than me and carries the groceries!

The sun is just beginning to set over the sea so I will sign off and enjoy the tranquility and the remainder of my hot water bottle.
Bye....

Bad Week

2005-10-25T17:19:00.000+01:00

I guess I've got off pretty lightly over the last 6 months, all things considering. Well, this week has more than made up for it. I have taken more paracetemol during the last 10 days than I have in the last year. I am in constant pain - sort of sciatic nerve pain but all over the body - and it has slowly got me down. I'm also now beginning to hate to take the wretched drugs because I know they are the cause of my pain. The virus has gone, my liver is normal and here I am feeling worse than ever. I can't tell you how tempting it is to jack it all in. But, I won't, I am far too stubborn!

I've slept most of the time during my tx but now I can't sleep. This isn't helping matters, I know. I am loathe to take anything - I couldn't face yet another type of drug in my system. I shall be so bloody glad when this is over.

I need something to cheer myself up - havn't the energy for the retail therapy so perhaps a banana sarni - I've become addicted to carbs which is probably my brain telling my sytem that I need more energy. I've also become addicted to Sudoku but that takes a bit longer and I need an instant fix.

At least my brain is still managing to stay alive - I even got a 'top' at bridge this week - perhaps the drugs are doing some good?

The banana sandwich calls.... bye

Manx Liverty Support Group

2005-10-11T09:07:00.000+01:00

I really feel that I turned a corner during our holiday in Madeira. I can't explain it but I came home feeling so much more like my old self. Since our return, I have hardly slept during the afternoon and although I still have those days where I don't feel I have the mental or physical energy to do anything, on the whole I am much more upbeat.

I was quite busy during the International Awareness Week. It kicked off with a live radio interview on Manx Radio. I did not feel nervous and I think it came over over ok - I just spoke the way I felt so it didn't mean having to be bright or clever (which is a bit difficult for me with my current brain fog). Anyway, you can listen to the interview if you want as I've put it on our Web Site http://spaces.msn.com/members/manxlivertyhepc/. I have been busy with this too. I managed to use a 'quick and easy' front end to get us up and running and then tried to remember some of my HTML code from my IBM days. It's a start in the right direction anyway and it does give our new found group, Manx Liverty, a shop window.

I have now only got 4 months to go on tx. I forgot to mention that my PCR test done at 6 months came back 'negative' so I am still clear - yippee! I have started to think about what I'm going to do when this is all over - it seems to have taken up such a big chunk of my life that I can't remember how it felt to be 'normal' ie lead a normal life. It's amazing how these drugs effect you. The good news is that I am coming through ok, I didn't lose my hair or my appetite and I am still in one piece (as well as the rest of the family which is a complete miracle - I am not the easiest person to live with these days...)

When Prof Foster phoned me with the PCR results, he said that Roche and Schering had come up with new guidelines for Type 1, low viral load folk on tx who had showed 'clear' at 1 month and 3 months. The new guideline is that they can stop tx after 6 months. I am type 1 and had low viral load. Unfortunately, we did not do a PCR test at 1 month so won't know whether or not I was clear that early on. We had a long discussion and eventually decided that the best option would be to continue for the remainder of the year. If I took the chance and it didn't work, I don't think I could face having to start the tx again and go through another year. It's not really a problem as I was already mentally prepared for a year of tx - it was simply very tempting to be off those drugs!

I have to say that I would not have got through this without the support of my friends and family. They have been terrific. There is not a day goes by without one of them phoning to get me off my butt and out of the house - even for a coffee. Today is one of those days - the phone has just rung and I am being 'dragged' out to lunch. Better get myself sorted..... bye

The Final Stretch

2005-09-15T09:14:00.000+01:00

I passed the half-way mark on Monday – finally, I feel as though I’m on the home stretch. Only 24 more weeks of tx to go! I have just returned from a week in Madeira and I feel so much better for the short break. During the holiday I somehow managed to push myself through that fatigue barrier and walked 4 miles nearly every day. I have returned with a ‘new’ spirit and went to play bridge yesterday for the first time in 3 months. My partner was a sympathetic one and forgave me my errors.

Prior to going away, I had been experiencing some strong aches in my left rib area. They were bad enough to cause me some concern. Anyway, my GP and the Professor had me whipped off to hospital for ECG and chest Xrays and a whole slew of blood tests – results all came back ok so still don’t know what they are all about. I had them again on holiday and even had to leave a couple of restaurants after eating. The pain/ache seems to appear after I’ve eaten or if I’ve left it a while without eating. My digestive system seems to be struggling to cope – perhaps my liking of spicy foods has finally caught up with me! I am seeing the Professor next Monday so hopefully he will get to the bottom of it. It might just be another side effect of the tx that I hadn’t experienced before. All my blood tests are showing normal.

It’s coming up to Hep C Awareness week and our support group is manning a table at the hospital – handing out leaflets etc. I have written another article for a local magazine and I’m taking part in a live chat show on local radio. Our new support group, Manx Liverty, will even get a mention in an ongoing radio commercial.

All in all, I feel for the first time, that I’m on the road back to being ‘me’ again. It has seemed very odd being in this other person’s body for so long……

It's my party & I'll cry if I want to

2005-08-01T15:22:00.000+01:00

Today is my 18th injection. Mondays seem to fly around although my weeks are full of nothing – I simply don’t know what on earth I do every day – not a lot!

Professor has gone on holiday and before he went he phoned to ask if all was ok. I told him I had been feeling a bit ‘down’ recently – not exactly depressed but heading that way. He encouraged the anti-depressant route but I am trying very hard to try alternative methods for the time being. I am taking my Wheat/barley grass tablets (which Prof said was ok) and they seem to be helping a bit. Trouble is I need to take 8 every day and sometimes I can’t stomach it – they taste dreadful and I’m not the best person in the world for taking pills. It takes me an age to get them down so truthfully speaking I am probably not taking the full dose on a regular basis. Must try harder!

Trying to analyse the ‘feeling low’, I suppose that on tx small cracks become huge craters so anything at all wrong with your life becomes a major fault. I have so many little fault lines in my world that earthquakes and tsunamis are happening regularly – or at least it seems that way. Tx too, seems to isolate you. I can’t explain it very well but I don’t have the energy or will to do the things in life that I was doing prior to tx. I havn’t exactly locked myself away or anything like that but I am reluctant, for instance, to go to play bridge these days. I do try and have a fairly ‘normal’ life like going out to parties or to dinner but I don’t have a lot to say to people – I am totally bored with talking about myself and my illness but there’s not a lot else going on for me to chat about…..

On a more positive note, it’s my birthday this week. I know at my age I should not be celebrating but what the hell. We have friends coming to stay and I’m having a birthday dinner for a few close friends. A new Italian friend (who happens to be a chef and who also had a liver transplant only last year) has offered to come and cook dinner for us so I get to enjoy it. The sun is shining, the sky is blue – what more could I ask for?

Bambi Effect

2005-07-15T07:14:00.000+01:00

Thank you for all your kind words and encouragement - it was great to hear from you!
Apart from the obvious benefit of tx and being 'negative' at 3 months, it has also transformed my little stubby eyelashes into the most wondrous things. Sam at HepC UK says it's the 'Bambi' effect - well, I just can't wait for the legs to start growing!

My red blood cells are running a bit low at 9 and so it's not surprising that I'm feeling jiggered most of the time. I've had an especially 'fatigued' week, sometimes even struggling to drive the 5 mins into town. A hepper friend here (who successfully completed her tx last year) advised me to have wheatgrass tablets to boost the red blood cells and I think I'll give it a go today. My Prof has said right from the beginning that a normal healthy diet should be more than adequate but I'm right off greens at the moment so I need a bit of help. Anybody else taking these? My friend used them throughout her tx and maintained a red blood count of 12 so I am tempted.

I did manage this week to meet up with a lady who runs DASH (Drugs and Support Helpline). This group have picked up the responsibility of running with the HepC Awareness Week October 1st and she's having meetings with other Isle of Man government representatives to decide what to do. She's invited me along to respresent our new support group (Manx Liverty). She was extremely helpful even providing me with the names of trusts here on the Island who are doling out funds to the needy groups like ourselves. Whether or not DASH is the right place to be directing all Heppers is another question but one that I will deal with in a separate posting. I think I am going to have to tread lightly and diplomatically on this one. I managed to get my hands on the official government brochure directed at newly diagnosed heppers. There isn't a single mention of people being infected other than via drugs or sex and the only support on offer is from Drug Clinics, GUM or AA. These brochures are not widely distributed and are not evident at GP's surgeries where, I think, they were supposed to be (perhaps fortunately).

A friend is coming to pick me up this morning and take me for coffee and 'catch up' so I'd better get a move on. It takes me longer to put on my mascara these days.....

12 Week Test Results

2005-07-07T16:13:00.000+01:00

I went to London last Monday, did my blood tests and saw the Professor. Everything is looking good. He did not have my PCR results but promised to phone me. We went to Fuerteventura the next day and I have to say I spent the first couple of days waiting for the phone to ring.

I was tucking into my bowl of muesli when the Prof called. My PCR results showed 'negative' - I am clear of the virus. I cried into my cereal! I am type 1 and I am well aware that the chances of clearing are only 45%. I know I still have a long way to go - another 8 months of tx and even then there is no guarantee but I am on the right road. I am so so happy.

I don't think I have done anything special. I have a normal appetite and eat a normal healthy diet with no alcohol. I don't take any supplements and I only drink a normal amount of water - perhaps 8 glasses on a good day but most times not even that. My main reaction to the tx is tiredness - no real other side effects. I just feel lethargic most of the time. I felt breathless for the first month but I'm back to normal now. When I feel tired, I rest. I just follow my body.

My nails have disappeared but fortunately, I still have a full head of hair. More amazingly, is that my eyelashes have grown(???)

On the home front, I meet regularly with other heppers and we are about to set up our own little support group. Tx here is very slow with lots of folk being diagnosed with Hep C but still waiting for tx to begin and then they are shipped off to Liverpool to get support from there. So perhaps we can offer a supportive hand here at home.

8th down - 40 to go

2005-05-24T16:52:00.000+01:00

Yes, I did my 8th injection yesterday - the weeks seem to fly by.

I travelled down to London on Monday morning and went straight to the hospital to do my blood tests. I then met up with Beverly who is over from the States and we had lunch together. We went to Carluccio's in Covent Garden - it was super catching up with her, we had a good natter and a darn good lunch at the same time. As we were leaving the great man himself sat in the corner counting his money....

I went back to the hospital and met with the Professor. He's very pleased with the way everything is going - he's quite surprised (and delighted) at how well I am looking. He said that I'm feeling better because the poison is doing its stuff and my liver is now functioning normally. Anyway, the blood results looked good enough for me to go back up to 1000mg of Ribs which I'm delighted about. We plan to meet again in one month and that will be for my 12 week test. He's absolutely convinced that there won't be any sign of the virus. I am feeling wonderfully optimistic.

I stayed overnight in London and pampered myself with a full body massage and facial this morning. I almost floated back onto the plane.

I am meeting a fellow local Hepper tomorrow for coffee. I'm really looking forward to that.

2005-05-17T16:03:00.000+01:00

Breaking down Barriers

2005-05-17T14:03:00.000+01:00

I did my 7th injection yesterday. Slowly slowly kills the monkey....

Andrew called me at about 10am this morning to say that he had just been 'stopped' at the coffee machine. My article has been published! I went and bought a copy of our weekly broadsheet and there on page 10 in 2" black print it reads "Aim to help hepatitis C lose stigma" with a picture of Andrew and I and a further title 'Breaking down Barriers' followed by my article. I had included an email address as well as a PO Box address so I hope any other local sufferers (or indeed anyone else) will contact me.

I also popped into the surgery and picked up my blood results. My haemoglobin still remains well under the reference range but has moved up a tad from 10.1 to 10.3. Professor says I have to stay on the lower dose for the moment. All the other results though are good.

Nothing much else to report - life goes on!

The Article

2005-05-16T16:25:00.000+01:00

Aim to Help Hepatitis C Lose Stigma

Breaking Down Barriers

I am writing this article for all those people here on the Isle of Man who, like me, have been diagnosed with a life threatening disease that they can’t tell anyone about. Why? Because there is supposed to be a stigma associated with Hepatitis C, the virus known as the Silent Killer. Hepatitis C is a blood-borne virus that affects the liver causing inflammation. It kills cells within the liver so that the organ starts to lose its ability to work properly which can eventually lead to cirrhosis and liver failure.

When I was diagnosed recently, I was advised that it was perhaps in my best interests not to tell anyone and perhaps even to consider having my treatment in Liverpool so that |I would not be seen to be having treatment locally. I’m not sure why there is a stigma attached to this disease but I would compare it to the early days of HIV/AIDS which was then seen as a highly stigmatized illness because of its associations with sexual and drug use behavior. Pamela Anderson is currently campaigning for more Hepatitis C awareness as she caught the virus from sharing a tattoo needle with her husband. The UK Government too are currently campaigning for improved awareness.

I can’t tell you how scared and lonely I felt when I was diagnosed – even though there was a room full of people and my husband was by my side. I thought, “This can’t be happening. Why me?” I was told that the treatment was horrendous. It meant having a year of chemotherapy and coping with the potentially severe side effects at the end of which, for my type, there was only a 50% chance of success. There was no way I could feed myself that poison.

At first, I lived in denial. I didn’t believe it was real. After all, I didn’t feel that bad. I had gone to the doctors complaining of fatigue and general irritability and it was originally diagnosed as Glandular Fever. It was only after several more blood tests that the Hepatitis C test came back as positive. It quickly transpired that I had a blood transfusion in Canada in 1983 – prior to blood being tested from donors – and I had inadvertently contracted the virus. It has been with me for all that time. I still don’t know why it has waited so long to show itself. Maybe I was a bit stressed out at work, who knows. This is the worrying fact about Hepatitis C. You can have it and not know about it. To think that it had been in my body for 23 years and completely undetected amazes me.

I remained in shock for a long time. I was also angry and frightened and I still could not believe this was happening. My husband was incredibly supportive. He was with me at every hospital visit and was very reassuring. He did quite a bit of research on the internet and tried to encourage me to do the same but I was too scared to read what it had to say. I could not face reading what was going to happen to me. I remember my first words to the Consultant were “Am I going to die?” I had to take things very slowly. I couldn’t tell anyone so everything just went round and round in my head. Eventually, I was bursting with a million questions and because there was no one I could talk to, I started to look at the relevant sites on the internet. I am fortunate in that I am computer literate and have easy internet access and I have to say that it has turned my life around. There is so much knowledge out there and the information about my disease is the sort that talks to me in a language that I can understand. I am now able to communicate with other sufferers and this means we can compare notes. I don’t have to worry on my own if I get a new symptom because I have an army of people who, like me, are going through exactly the same process.

I started my treatment six weeks ago. I inject myself once a week and keep the drug topped up with oral medication every morning and evening. At the moment, I am coping well and not experiencing too many side effects. Whilst I am not able to work, I do keep myself busy and feel very upbeat and positive. I have regular massage to help remove the toxins from my body and, of course, I have the close support of my family and many dear friends both locally and on the internet. Medical science is still grappling with this complex disease so I do recognise that I must help myself in order to help them. If you have been diagnosed and want to share your experience please contact me on tka5@hotmail.com or write to me at PO Box 23, Douglas, IM99 3HJ.

The Facts
Hepatitis C virus (HCV) is classed as the fastest-growing infectious disease and this upward trend is set to continue. If it does, by the year 2010 we can expect many thousands of people to have developed HCV- related cirrhosis, with many requiring liver transplants. It is an epidemic problem. Infection with the hepatitis C virus is common, and there are around 170 million people worldwide who have contracted this virus.

Up to half a million people in the UK have hepatitis C, but as many as 90 per cent of these may not even know it. Health experts are warning of a hepatitis time bomb that could explode, as most of those infected caught the disease before 1989, but it can take 20 years for symptoms to emerge. The Institute of Liver Studies at King’s College in London says that cases will quadruple over the next 10 years and will peak in 2015. New infections are falling as more people become aware of the illness.

Symptoms include abdominal pain, nausea, fatigue and jaundice but many patients do not develop symptoms until severe liver damage has occurred. Up to 30 years after infection, liver inflammation, cirrhosis and liver cancer can also develop. Most of those infected contracted the virus through contaminated blood transfusion before screening began in 1992, or by intravenous drug use. Other routes for infection are unsafe sex, tattoos or body piercing.

The disease can readily be detected by a simple blood test.

The Department of Health in UK launched an awareness campaign in March 2004.
For more details visit:
http://www.hepc.nhs.uk
http://www.hepcuk.info

(The Facts para was proofed and modified by my Liver Specialist)

6 down- 42 to go!

2005-05-09T17:31:00.000+01:00

We got back from holiday this morning and I have to say the break has done me alot of good. I feel very relaxed and rested and my appetite is back to normal - believe me, I am making up for all those skimpy meals of late!

I nearly didn't get to go..... we flew over to London en route to Fuerteventura and I popped into the hospital for blood tests before we flew on. The Professor called me during the afternoon to say that he wasn't sure he was going to allow me to fly as my haemoglobin levels were at danger point. A few choice words went through my head and after a long discussion he finally relented on the flight but reduced my Ribavirin dosage by 200mg. I was simply not getting enough oxygen which he thought would be exacerbated by flying. In the end, I was fine and I have to say that after a week on this lower dosage, I am feeling totally back to normal (which is probably why I am eating like a horse).

We stayed at the Golf Club in Fuerteventura - an oasis of tranquility. We did not even know the election results until we got back (no English TV, no papers.....). Just relaxing in the sunshine has done me a world of good. I managed to walk several miles a day, eat healthily and of course, stick to water.

We arrived home this morning and I went straight along to my local hospital for more blood tests. The Prof wants to put the dosage back up just as soon as he can. I have just done my 6th injection and I wish the blood tests were as easy. I have very small veins and everyone struggles to find a vein big enough. The lady at the London Hospital hit a nerve last week and it felt as though I had been hit with lightening - it's put me off a bit.

There was a message from the Newspaper....they are coming along tomorrow to take photos of us re the article. So I am sitting here wandering what expression I should use .. happy, sad, ponderous. I’ll think on it…..

4 down

2005-04-26T13:43:00.000+01:00

The fourth injection – just don’t know where the time has gone, it seems to have flown by. Without wishing my life away, I hope the next forty four weeks go by as quickly!

I have written my article for the local newspaper and hope to get it published asap. My objectives have been to make folk more aware of Hepatitis C but really it is aimed at other heppers who live locally and have, perhaps like me, been advised to keep quiet. They might not be as fortunate in having access to the internet and the array of information that provides. They may be feeling lonely, scared and angry just like I was. I decided to put my name to the article too – I want to stand behind my words and stand up for what I believe. I could not have done this without Andrew’s total support. I expect my ‘coming out’ with affect him more than myself as he is quite well known within the financial institutions here. Neither of us see any point in writing the article anonymously. I don’t expect life will be all sweetness and light after publication – I guess I am in for a few surprises but I’m ready for that. At least I shall find out who my true friends are.

We are off to Fuerteventura next week and I’m so looking forward to soaking up some sunshine. As I write this, the rain is pouring down and the fog horn is droning away. So to make things more cheery I have the suitcase ready and waiting and I have even sorted out my holiday clothes– I usually pack the night before! It is surprising how a bit of promised sunshine can be so motivating……

2 week post tx check-up

2005-04-20T08:18:00.000+01:00

I flew into London on Monday for my 2 week post tx meeting with Professor Foster. I took the early morning flight although my meeting was not until 5pm so I had the whole day to do exactly how I pleased. First thing was coffee with a friend at Carluccios and then off to get my nails done. They are in a sorry mess. I had expected them to become brittle but not this soon and not all at once. Anyway, my ugly duckling nails came out as beautiful little swans (albeit a lot shorter) and I felt happy again. I walked and shopped for the remainder of the day, stopping only for a half hour lunch break. I arrived at the hospital loaded down with the efforts of my day’s shopping. Professor Foster took one look at the bags and started laughing “So you are feeling ok, then”. He’s pretty pleased with the way the tx is going but warned me that Pegasys is a slow starter and that I’m likely to feel worse during the next 2 weeks. He also said that if he tested me now, there would likely be no sign of the virus. I can’t tell you how happy this made me feel. I know it doesn’t really mean very much as I still have to carry on for 45 more weeks of tx but it’s just nice to think that I’m beating those little blighters. I had the blood tests and Professor Foster promised to call me the next morning with the results. I lugged my shopping back to Beverly’s flat and collapsed in a contented heap for the night.

I took the early morning flight back and dad met me at the airport. My phone rang and it was Professor Foster with the results. All the numbers are down but are still above the safety line so I can continue with the dose I am on. He wants to get me tested again next week as I am going away the following week and he wants to make sure that I’m still above the safety margin. I feel as though I’m in such a pair of safe hands!

I almost forgot to mention that I did jab 3 on Monday too – it has become such a non-event. There are still no signs of any injections and I don’t get any reaction. I feel worse on Thursdays when I think the Peg bit kicks in but even that isn’t too bad – just fatigue and feeling a bit under the weather. I’m a bit breathless too. I am lucky that my jab days are Mondays as this leaves me feeling quite normal on weekends which is when we do quite a bit of socialising. I have been able to continue going out and about seeing our friends and apart from my not drinking, no one would know the difference. Professor Foster warned me again on the phone to expect things to get a bit worse in the next 2 weeks. At least, I shall be feeling worse in the sunshine……

Weary

2005-04-15T13:42:00.000+01:00

I guess the poison has finally kicked in because I haven't felt too great for the past couple of days. Nothing I can describe other than 'just down right weary'. I managed to summon enough energy to do the grocery shopping and followed that with a massage and that was me for today. I came home and soaked in the bath. I am now dripping in cocoa butter (smells delicious). I weighed myself and I've lost 2lbs since I started - I need something to jolly up my appetite - everything tastes so blah.

I plan to put my feet up for the rest of the afternoon. My body is telling me to rest so I shall.....

Running on Empty

2005-04-14T15:54:00.000+01:00

I’ve decided to have a day off life today. It’s one of those ‘nothing’ days. I have lay on my bed for most of the day and done absolutely nothing – I don’t even mind doing nothing. I don’t feel like doing anything….eating, drinking, reading, writing … I feel no anger or frustration….I am quite at peace. It is perfectly silent. The sea is calm and the clouds are still. Even the cats know not to bug me. It’s like being in a vacuum and whilst it feels quite nice for a change, god I would hate to feel like this all the time.

Candy floss brain

2005-04-13T12:18:00.000+01:00

I might have had lead running through the veins yesterday but it was certainly candy floss packed between the ears. I am in the process of renewing my Canadian passport. The forms had been sitting in a drawer for well over a year and I decided to get my butt off the ground and sort it. My GP signed the guarantor bit and the photo and off it went by registered mail. That was two weeks ago. Yesterday, a little package arrived from the Canadian Embassy. No, it was not my new passport. They sent all the forms back saying that the distance from my forehead to my chin in the photo was not the correct measurement and, the form was now out of date. Start again. The rules for the actual face measurement were so precise that they had sent me a template. I had no choice but to go to a proper studio and pay £25 (rip off or what) for 4 precise photos. I got my lawyer friend to sign the necessary bits as guarantor at yesterday’s meeting and then he noticed another rule. The photo had to have the photographer’s official stamp showing name and address on it. Damm, back to the studio I trudged. By now, there was hardly any room left on the back of the photo for anything but they dug out an old stamp, re-inked it and yes, you guessed it – I ended up with a lot of black smudgy ink. The ink was still wet as I made my way to a cab rank so rather than put the photo in my purse, I got in the first cab and put it on the dashboard to dry. I was home 5 minutes later and dashed off to visit my friend.

All I had to go this morning was collate all the bits of documentation and post it. Except I couldn’t find the signed photo! Bloody hell, I soon realized what I had done and I hadn’t a clue as to what cab company it had been or even what make of car. I had sat in the front and chatted to the driver so I remembered he was short and young and he was driving a people carrier of some description (they all look the same to me). I drove to the cab rank I had used and went up to a people carrier in line. No, the driver didn’t fit the description at all. I must have looked really stupid asking him, “do you know a young short guy who drives something like this”. As luck would have it he said “you’ll be wanting one of the Lonegans…..yeh Daniel” and rolled off his telephone number. Indeed, it was Daniel and yes, he did have my photo so a quick drive around to another cab rank where he happened to be sitting and my world was made whole again.

Gym & tonic?

2005-04-13T09:17:00.000+01:00

I felt a bit old yesterday. Everything was too heavy. I could hardly open the bank’s swing door – I struggled and struggled and finally a nice young man put me out of my misery and came to the rescue (mmm, being feeble does have its advantages, I thought…)

Pre-dinner is a bit of a bore these days. I used to sit and enjoy a glass of wine with dad whilst waiting for Andrew to appear. So to compensate, I’ve taken to bringing my laptop down and in between prepping dinner, I rummage around the net or whatever (play the latest game…). ..and sip my tomato juice. Yesterday, the laptop felt as though it was a lump of iron – I had to use both hands just to get it from my bedroom to the kitchen. And there was no way I was going to manage to carry the glass of water as well.

Earlier in the day, I had to abandon any idea of going to a meeting in my car – I couldn’t close the bonnet! How whimpy is that. Andrew had kindly left the trickle charger going on it and I managed to sort that but no matter how hard I tried I could not close the lid. Dad ended up dropping me off on the way to his game of whist. The good news is that pre tx I would have gone into an instant rage. Late for a meeting, Andrew’s fault……but yesterday, I took it in my stride. I felt the frustration but it never surfaced.

In an attempt to regain my physical wellbeing, I'm restarting my yoga class tomorrow. And today, car permitting, I'm off to play bridge.

2nd injection - only 46 to go!

2005-04-12T06:57:00.000+01:00

Monday Morning
I woke up at 8am and immediately felt tired. Not too surprising really, as I’d had quite a busy weekend. I had continued to move furniture from one room to another and then decided that both rooms should have a Spring clean while I was at it. We didn’t finish until late Saturday afternoon and there was only time for a short break (long enough to sit in the ‘new’ room and critique the endeavours) before it was time to get ready to go out. We were going out to dinner with friends which usually entails a lot of laughs, a lot of wine and a late night. I have made a point all week of sticking fairly rigidly to the same time for taking the medication so I took my Ribs with me and discretely swallowed them at the appropriate time. I hasten to add that I stuck to water all evening. We were up at dawn on Sunday to beat the tide to the Tower and this was followed by a good stint in the garden. Sunday was such a lovely day that we finished it off by taking my car for a spin – it needed a good run to get battery recharged – we finished up having cappuccino on the promenade. The sea lapped at the sea wall and there we were looking at the very Tower we had walked to that morning.

So, it was not surprising I felt tired when I woke up on Monday morning….

I was deliberating on rolling over and catching a few more winks, when I suddenly remembered they were delivering the new kitchen floor. This was enough to galvanise me into action and my tiredness was soon forgotten. At 5:45pm I did my second injection. I went for the right hand midriff this time. No problems and again, no mark. I am having to make a mental note of where I’m doing them as there’s not even a pin prick to be seen. We had dinner and I stayed up until 11pm – I didn’t feel very tired but went to bed anyway and eventually dropped off at about 12:30 – mainly because of the election drone that was dribbling out of the TV.

Tuesday
I had quite a short night last night. I usually sleep for a good 8 hours and I was awake at 5:30am. I didn’t get up though as although I was awake, my eyes felt tired. I’ve got a business meeting lunch today and then I’m meeting a girlfriend for coffee. She and her husband were in Phuket during the Tsunami and, thank God, they were one of the lucky ones and they both survived. By coincidence I watched a Tsumani follow-up programme on TV last night. It showed a couple who had lost their little boy and my heart just broke for them. It makes my troubles seem like a drop in the ocean.

Strong Resolve

2005-04-10T14:22:00.000+01:00

There are only two times in the year when you can reach the Tower of Refuge. These are during the Spring and Neap tides when the tide is so low that you can walk across the sand and explore this little folly in the shape of a castle. It was built and partially funded by William Hillary, the founder of the R.N.L.I. in honour of all those who lost their lives on the St George. The ship, apparently, hit the rocks and although only a 100 yards or so from land, the majority of the sailors drowned. Mr Hillary, who lived in a house looking out over the bay, saw the ship in trouble and went out in a rowing boat to try and save lives – this is when he founded the very special lifeboat institution. Anyway, I see this little tower every day – seemingly floating in the Irish Sea and I always think about the story. It just so happened that the low tide today (being part of the Spring tide) coincided with a reasonable time for us to explore. So at 6:30am this morning, we donned our wellies, packed our flask of hot coffee and together with the ginger biscuits we set off to get a closer look at Mr Hillary’s little folly. We planned our trek very carefully as we get a 9 metre tide here and there was only about half an hour to play with. The Tower was much bigger than I had expected and even had a fireplace – would not fancy being there though during our stormy weather. Anyway, I obviously made it safely back so got stuck into the garden as I was already quite mucky. I had a good go at the rockery…. The sun came out and it felt so good to be out there just tinkering about.

I am nearly at the end of my first week on tx. I have made the following observations:
* loss of appetite for the first 24 hours after taking Interferon, thereafter appetite was normal
* a slight feeling of tension, not pain, in the head for the first 2 days after taking my evening dose of Ribavirin, thereafter normal
* normal night sleep pattern
* required an afternoon nap on the day after taking Interferon and thereafter no naps at all
* No nausea
* Greater energy all round
* Tolerant and relaxed (i.e. rage has gone)

The only thing I am not too happy about is the recent haircut but suppose that’s a girl thing…..

PS I put £5 on Strong Resolve in the Grand National yesterday and whilst it didn't place, it did finish!

The Cat with No Tail

2005-04-08T09:13:00.000+01:00

There’s a blue sunny sky out there and the sun is bouncing off the water which is surprisingly calm after the hooley that blew most of the night. There’s a warship in the bay – it’s been there for a couple of days and this usually means that royalty is dropping in – perhaps the Duke of York for a ‘game of golf’.

The Isle of Man still has the Queen as it’s head of state but the island has it’s own Prime Minister and it’s own government – the longest surviving democratic government in the world (1,000 years of continuous parliament.) We listen to the English laws and if we don’t like them we don’t have them. We make our own laws. For instance, there’s no speed limit on roads in the countryside…bit of a daft rule it seems to me but lots of visitors come over every year during TT to race motorbikes at ridiculous speeds around normal roads. There are 70,000 inhabitants and this doubles during the TT fortnight – the place roars!

We don’t depend on Tourism any more to put coffers in the bank – we only get visitors really during the race weeks. The island runs a balanced budget and actually has a bit of a surplus built up. We have a triple A rating from Standard & Poors and this means that the Government here doesn’t tax us very much either. Our Ministers are spending all the time – we have a brand new hospital, laptops in nursery schools, and even the latest waste disposal system so apart from the weather which is usually wet and windy and the inconvenience of having to always take that extra flight to get anywhere warm and the fact that shopping is non-existent, it’s not a bad place to be. We were not born here so are not considered to be ‘Manx’ but as we’ve been here for longer than 10 years we are considered to be ‘stop overs’. ‘Left-overs’ is what you get in the shops…..

Must run as I have a massage arranged for this morning and then I’m off to get some of these long locks chopped off!

What's New Pussycat?

2005-04-07T09:11:00.000+01:00

This time last year I was working as a fundraiser trying to raise over £2.5 million annually. It was about this time that I went along to my GP complaining of extraordinary fatigue and violent mood swings. It was difficult being a fundraiser and a Rottweiler at the same time. I wasn’t happy just nipping at heels, I had to go for the jugular – easily identifiable now as the ‘rage’. Except I had it prior to my tx. And I hadn’t always been a Rottweiler, not even a little terrier – this angst was a new part of my personality. (I still don’t understand why I had the virus for 20 years and it only decided to pop out a year ago?)

So what’s the point of all this – well, since starting tx just days ago, the Rottweiler has gone and in comes the pussycat. Andrew tells me that he cannot believe the difference, it is so marked. I haven’t had the courage to confirm it with dad yet as I feel so guilty at how mean I’ve been these past months……. All the rage anecdotes I read in other Blogs was me – ranting at other car drivers, exhaling dragon flames at supermarkets, flying off the handle at the drop of a hat and then wandering ‘what on earth was that all about’.

Anonymous wrote to me saying that they had a friend who actually felt better on tx. Please anonymous, tell me more. What genotype was she? Did she get rid of the virus? How is she now?

I am worrying because I feel so much better than I did – how do I know the tx is working? It’s supposed to beat me around the head and leave me in a crumpled heap and here I am singing and bee-bopping around the house.

Early days

2005-04-06T08:00:00.000+01:00

I am at the beginning of Day 3 – I know early days – but still no mark at all at the injection site. Better still, no flu either. I arrived home from London yesterday and set to and made bread and my energy lasted until mid afternoon and suddenly I needed a nap. I am a great believer in listening to and following your body so off to bed I went and had a nap. Fortunately, I woke up one minute before the bread was due out of the little oven – must have been that wonderful smell that woke me!

By the time Andrew came home, I had a bit of a weird feeling in my head. It’s like my head is the same size but everything in it has doubled in size and it’s all struggling to find a space. There’s no pain – just a weird fuzzy feeling. I didn’t feel like eating either. All those ‘Rise and Shine’ muffins I had imported yesterday have had to go in the freezer – just couldn’t face them. Andrew made me eat something …. It’s like being back at school dinners….. and I spent the rest of the evening watching a funny movie. I decided to take a Paracetamol before going to sleep in case my head exploded during the night – no points for martyrdom I thought.

I have woken up this morning feeling fine – eaten my muesli and fresh berries, drunk my camomile tea and now have my ribavirin pills and today’s appointment with the dentist to look forward to. I might even go and play Bridge this afternoon…..

1 down, only 47 to go!

2005-04-05T15:26:00.000+01:00

J-Day
I arrived in London mid morning and spent the rest of the day trekking around the shops. Andrew met up with me mid afternoon and my poor feet were killing me by the time we got to the hospital - I’d have much preferred to be seeing the Chiropodist. We picked up the prescription (two weeks of jabs and pills) at the hospital pharmacy and then they picked us up off the floor – this tx is not cheap! And definitely not my kind of shopping!! We met with Prof Foster who explained in great details the types of side effects that might come into play (he did stress the might) and we shared a bit of a joke about the Blog (he knew all about it and the contents but admitted that he doesn’t read them personally). Then it was down to serious business – doing the jab. He showed me what to do and said to just go for it so I did. I didn’t feel a thing and even now, nearly 24 hours later, you can’t see a pin prick. I am on 180mcg Pegasys and 1000mg Copegus.

We left the hospital and I noticed a very slight metallic taste at the back of my throat but not enough to put me off dinner. We enjoyed a wonderful meal at an Italian restaurant and were hoping to catch a movie but the only one we both fancied (Hitch) didn’t start till quite late. So we ordered Cappuccino and afterwards I downed my first 3 ribavirin pills. I take 2 in the morning and 3 at night. We were only a couple of tube stops from the flat so I wasn’t too worried about any side effects suddenly coming into play. We got home and I got stuck into a new book I’d bought. It was about 10:30 when I started feeling quite tired. My feet still ached but that was not surprising having walked around all day and I also felt a bit cold so added an extra blanket. I fell asleep with the Paracetamol at the ready but as yet I haven’t needed one.

Day 2
I had a good night’s sleep and woke up at the normal time. My hair was tangled more than usual so I must have been a bit hot during the night – not enough to wake me though. We went over to Starbucks and sat outside with my rise and shine muffin (they call them bran muffins elsewhere but that probably sounds too healthy for us Brits) and my big mug of Americano. I took my morning dose of ribavirin and we headed off to the airport to catch our plane home. I sensed that metallic taste again after about 1 hour. I feel normal, so normal, in fact, that I’m wandering whether the medication is working. The Professor did say that this type of medication has less side effects at the start but let’s you know you are on it at the month stage….right about the time we’ll be in Fuerteventura. That aside, I think, all in all, a good start!
Ps I told them I was carrying an injectable medication when I checked in at the airport – they didn’t even want to see the letter that Prof had given me and same again when I went through security.

Hopes and fears

2005-04-03T21:00:00.000+01:00

I feel so well – the best I’ve felt in a long time – it seems ironical that tomorrow I start my tx and pitch myself into my year long battle against this horrible little virus. I am a very positive person – always half full rather than half empty – but I know already that this isn’t going to be easy sailing for me. For a start, I hate taking pills – any kind of pill – they all make me feel sick and more than anything else in the world I can’t stand feeling nauseous. So, before I even start I know I’m going to find it hard.

Today was great. I woke up with the idea of swapping around the family room and the dining room. God knows why this had to happen today – especially as we had a bunch of folk coming for lunch. Andrew was game, so no sooner had the idea been borne, we were trundling rugs and furniture from one room to another. I was actually energetic – haven’t felt like this for ages! We had a wonderful lunch which lasted until past 6pm, lots of laughs, good food and wine and it left me with a sense of what life is all about really – great friends! I love entertaining so hope I have the energy to keep this up during the year.(I did stick to water.....)

I’ve got lots of hopes - too many to recount here but......I hope that out of all the bad stuff I learn more about myself. I hope I’m not too crotchety with hubby and dad. I hope I don’t kick the cats. I hope that the brain fog doesn’t prevent me from playing bridge. I hope that I can help with the awareness of HepC. I hope I can help remove the stigma as perceived on this little island. I hope I complete the tx. I hope I win the battle!

So, into the fray I go and if I have anything to do with it I shall come out victorious.

The count down

2005-04-01T17:30:00.000+01:00

I must be home – it’s pouring with rain and the fog horn is sounding off in the harbour. I had a great holiday and I’ve come back feeling well and rested – there’s nothing better than a bit of sun in your old bones! Apart from eating well and soaking up the sunshine, I also managed to do a bit of clothes shopping but the best bit was spending a whole week not centred around my virus – I almost forgot about it!

I got back to find an email and letter from the Professor reminding me about Monday next – ONLY 3 days to go! I’ve decided to make the most of feeling well so have organised a bbq on Sunday (rain or shine) and have invited some friends over. Perhaps it’s a case of just keeping busy…….
We fly to London on Monday morning but my appointment isn’t till late Monday afternoon – I shall have time to do a bit more ‘real’ shopping, perhaps get my nails done and stock up on Rise and Shine muffins from Starbucks. I don’t know how long the appointment is going to take and it really doesn’t matter too much as we are not going to try and rush back on the evening flight. My good friend Beverly has loaned me her flat again (thanks toots!) so if I suddenly get the onset of flu symptoms I can curl up and go to sleep in familiar surroundings. We have a bit of time to kill on Tuesday morning before flying home but don’t suppose I’ll feel much like shopping….

On a happier note, I am planning already to take another sunny break in about four weeks – 48 weeks of this treatment seems an awfully long time so I’m going to break it up into little chunks. Perhaps the treatment won’t seem as bad if it’s sunny outside?

Fly Me High

2005-03-23T13:21:00.000Z

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……)
love
Tink

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

2005-03-21T07:31:00.000Z

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.

Friday night blues

2005-03-19T06:57:00.000Z

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….

The fog returns

2005-03-16T08:42:00.002Z

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!

The fog lifts

2005-03-09T08:15:00.000Z

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.

Armaments

2005-03-06T08:35:00.000Z

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!

Preparation

2005-03-04T15:43:00.000Z

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.

Letting off Steam

2005-03-03T06:43:00.000Z

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.

I'm not alone

2005-03-01T16:27:00.000Z

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!

Decision Time

2005-02-28T12:34:00.000Z

I made up my mind to go ahead and have the treatment. I start on April 4th - a month today.
I live on this small island of 75,000 people and now I am worrying about how ill I am going to look. Is that stupid or what? This time last year I was the fundraiser for a local charity so I do get recognised on a daily basis around the town. I normally worry about whether or not I have lippy on and now will I have to walk around town with a paper bag over my head....how bad is it going to be? Will I even want to go out? At the moment I play bridge twice a week - will I be able to continue to do this with a foggy brain (and a brown paper bag over my head)? Lots of questions and I just have to wait and see for the answers. Nothing is going to put me off though - I have to go through with this!

Biopsy Results

2005-02-24T08:31:00.000Z

Professor Foster called me on Tuesday evening. Andrew, my husband, listened in to the conversation and made notes for me. It's strange that you listen to a conversation but don't 'hear' alot of what is said. Andrew made copious notes when we went to London to see Prof Foster for the first time - there was no way I could have taken in everything.

"It's good news", said Prof Foster, "the biopsy results show that you are at Stage 1 (we had secretly thought it would be Stage 3 - no reason just a gut feel) and because of your low Viral Load Count (18,000) you have choices".

I could sit tight and do nothing. This is, after all, a very slow progessing disease. He told us that there are no new drugs on the horizon ie 3-5 yeears and that my chances of 'beating' the virus would go down by 10% for every 10 years I waited. On the other hand, with my biopsy results, I had a good chance of knocking it on its head by doing the treatment.

I have read so many dreadful things about the treatment side effects. I mentioned these to the professor and he said that there are folk out there who don't suffer so much but they also don't write about it either. He more or less said that 20% had a bad time, 20% felt not so good and the remainder had a fairly easy time.

I am not even on treatment yet and I feel constantly irritable, full of rage, constantly tired, totally lethargic and my hair is falling out. What chance do I have of having an easy time of it? Mind you, the cats hair is falling out too so mayble that has something to do with the season....

I knew before I had put the telephone down that I had to do the treatment. It's part of my personality - I'm a do'er. I don't want to look back in 10 years and think 'if only'. So, I slept on it and next morning woke up feeling exactly the same. I have to give it a go. I emailed Professor Foster and we plan to start the treatment after my Easter holiday. I feel very positive!

Update

2005-02-22T03:52:00.000Z

Professor Graham Foster rang to confirm that my Genotype is 1b - as predicted. He will call me tomorrow with the results of the biopsy. So no need to worry about treatment or no treatment until then. He said it will depend upon what stage I'm at. I can't believe that this virus has been in my system for 23 years - gosh, when I think about all that wine I've consumed!

SCARED STIFF

2005-02-19T23:15:00.000Z

Hello, my nickname is Tink and I've recently found out that I have Hepatitis C. I'm living in a fog at the moment - I can't believe what is happening to me!

I went along to the GP with a lump in my stomach area and complaints of being continually tired. The lump turned out to be a hernia and the fatigue, which was initially thought to be Glandular Fever, turned out to be the Hep C virus. I've sort of heard of it but until now did not know a single thing about it. I had to rush home and dig around on the internet to find out exactly what it was all about. The more I read the more sick and scared I became.

I live on an island in the middle of the Irish Sea so doctors here are not so well used to dealing with alot of this sort of thing. They gave me an ultrascan and told me about the treatment and my immediate reaction was 'absolutely no way'. I very rarely take any sort of medication - I hate the thought of all those poisons being in my body. I hate needles - I took the day off school when we were due to have the TB jab just to get out of it. I forced myself to read whatever I could find on the internet and after reading alot of other Blogs and HepC sites, I realised that I do not even know what Genotype I have or what my Viral Load Count is..... questions I did not even know to ask when I saw my specialist.

I couldn't live without knowing these things any longer so last week I contacted a Liver Specialist in London and within 24 hours he had arranged for me and my husband to meet him....he gave me all the tests and 3 days later I had a liver biopsy. That was last Thursday and I expect to hear the results next Wednesday. My specialist thinks that because I probably 'got' the virus from an operation I had in Canada some 23 years ago, it is likely to be Genotype 1 which means, I believe, a full year of that dreaded treatment. It is amazing that I am now even considering it...only a week ago I was dead against it. Just meeting and talking to someone who knows so much about the Liver and Hep C has made me feel so much better. I feel strangely at peace - sounds daft - the lull before the storm perhaps....?