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Tink's journey with Hepatitis C

Tuesday, April 26, 2005

4 down

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……

Wednesday, April 20, 2005

2 week post tx check-up

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……

Friday, April 15, 2005


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.....

Thursday, April 14, 2005

Running on Empty

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.

Wednesday, April 13, 2005

Candy floss brain

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?

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.

Tuesday, April 12, 2005

2nd injection - only 46 to go!

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.

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.

Sunday, April 10, 2005

Strong Resolve

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!

Friday, April 08, 2005

The Cat with No Tail

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!

Thursday, April 07, 2005

What's New Pussycat?

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.

Wednesday, April 06, 2005

Early days

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…..

Tuesday, April 05, 2005

1 down, only 47 to go!

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.

Sunday, April 03, 2005

Hopes and fears

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.

Friday, April 01, 2005

The count down

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?