Friday 27 April 2007

I'm sorry I haven't a clue...

I would like to extend a heartfelt apology to all and anyone I may have had a conversation with recently.

I used to consider myself to be a good friend. Someone with an ability to listen to what the person I'm talking with is saying, and to take it in. To care about the conversation we are having, to remember it for future conversations. That is one of the key things that makes a good friend in my opinion.

Lately I have been listening but hearing nothing. I try really hard to remember what someone is saying; indeed I may be fascinated by it at the time. But more often than not if you ask me afterwards what was discussed I can perhaps recall 20% and I think that's being optimistic!

Some of it might return in time, snippets flying back into my consciousness. Or if something was mentioned a memory could be triggered off like a hot air balloon rising out of the depths of my mind.

I attribute this in the main to the interferon and ribavirin treatment I had for Hepatitis C. I’m sure my brain has not been the same since then. Before the treatment and problems with Hepatitis C I was proud of my memory, at one stage I could remember all my friends’ birthdays, their phone numbers and addresses down to postcode level. Maybe it is the age of the mobile phone - who needs to remember anything these days when I can pop it in my Sony Ericsson organiser - I'm convinced it's more than that.

Ok, I hear you say, I'm 33, maybe it's my age?? Whenever I mention my forgetfulness to anyone they say - 'Oh yes, I do that, that's just old age', I'm 33! And I remember practically nothing!! That's just not right. Or at least it isn't good enough for me.

I am failing in my attempt to be a friend, I am rubbish at what I used to pride myself on. It is so important and I just cannot do it like I used to.

I am now desperately scrabbling round the inside of my fluffy head for an example.

I have friends who are new mums working part time. They have told me time and time again which days they work and which they are at home. I couldn’t tell you now when they’re at home if you offered me a large box of Malteasers. I know I’ve been told. I know I listened at the time. I’m too embarrassed to ask yet again and really look like I don’t care because I do. So I don’t ask. And therefore look like I don’t care!

It's not just conversations. If anyone asks me to do anything for them, both Ade and his mother will testify to this, I will absolutely not remember unless it is written down in a place that is staring me in the face. The number of times Ade says, have you done suchasuch? I reply, whatawhat? You know, the suchasuch we discussed yesterday ... he grimaces at my blank expression. The suchasuch!! Ummmm, remind me again... What ever it was had gone like puddles in the sunshine until he prompted me. Sorry to him also, I honestly am not doing it on purpose just to annoy.

Work had, before my latest period of time off, become affected - I was swimming in a sea of things to remember hoping that I wouldn't get totally swamped and sink to the bottom with a soft plop. As everyone suggests and I always do - I took notes of everything. Every conversation, every meeting, every training session. I had four notebooks on the go for different areas. I had an appraisal and one of my peer review comments was 'Ros makes an excellent scribe and takes fabulous meeting minutes' - do I ever!! It's either that or become totally non-functioning!

I'm not just being lazy, I try really hard during a conversation to hold onto the important bits for longer than the duration of the conversation. I feel like my brain is mushy, that the interferon brain fog got hold of my tiny head and never let it go. My homoeopath has told me that the memory is one of the things the body can do without when it has to focus on repairing other areas. He thinks that as I have chronic fatigue the memory will be one of the last things to return to normal. I hope it does eventually.

So sorry to one and all - please forgive me if I forget your birthday again, forget your family’s birthdays, forget any detail you've told me in the past, forget your name (luckily that hasn’t happened yet thank god, I will check myself in for tests when it does!). I'm not trying to be obtuse. Don't take it personally I'm sorry I haven't a clue...

Monday 23 April 2007

Bathroom Phobia

We spent Saturday night round at our good friends' house. They had invited us round for a relaxed takeaway and a bottle of wine.

I had vowed that morning I wasn't going to drink any more, just in case that was contributing to how I'm feeling at the moment. My current bout of exhaustion may well be linked to my liver still, as well as the tidal waves of bleeding. However I was offered a Prosecco and Cassis and being rubbish at sticking to things and not one to resist a new concoction, I accepted. It was very yummy and a subtle red colour, my favourite shade.

I began bleeding again on Friday. Having worked out that it was 8 days since I had last stopped I was not terribly impressed. It came on heavy and suddenly and I was glad to be at home with my crate of sanitary accoutrements, not in the middle of Kidderminster or on a train or something less convenient. I have already become extremely familiar with the M&S loo but as I wasn't expecting to be starting again quite so soon I would have been unlikely to have my purse full of products.

By Saturday night I was prepared and took a large handbag full of Always Ultra and a cool bag full of Haemate P round to our friends. I needed to take the drugs because I am still doing the injections every 12 hours and would be due to shoot up at 9pm.

By the time it was 9pm I'd had a couple of Prosecco & Cassis combo's and was shooting up in their kitchen slightly under the influence m'lud. Didn't affect my technique - still got a vein in one. And not a drop of blood anywhere - even on the little nest of kitchen roll I'd put out to protect their table.

The worst thing for me was using the downstairs loo with a heavy heavy bleed going on. I'm going to be honest about it here, so they may never invite us again, or in fact want to speak to me at all! When my period is that heavy and you're pulling the string (ladies I'm sorry to mention this but hey, that's how it is; fellas if you have no idea what I'm on about please move along...) it literally takes the tiniest pull and the weight plummets the thing out and thudding into the bowl. In the course of this I can often get somewhat bloody through no fault of my own - ewww sorry!! It's then a challenge of not getting blood splatters a la C.S.I. around the smallest room while I try and clean up as soon and as hygenically as I can. My friend had plenty of soap - two bottles - so that was ok. I am cleaner than clean as far as this goes so please don't stop inviting me round!

You'll understand why I have an uncomfortably close relationship with public loos. If I had a problem using a public loo or any kind of bathroom phobia I'd really be in trouble when I was bleeding. I would not like to remain in my house all the time purely so that I can use a clean toilet equipped with plenty of soap, a decent bin and an unending supply of sanitary products. Sometimes if I'm up to being out and about it is nice not to have to stay in solely for the facilities.

From our recent trip to London I can advise you that the loos in Liberty's were extremely narrow and poorly lit. Now I don't need lighting particularly, I'm happy not to see the carnage in the bowl but a little bit of room to swing a tampon would be appreciated. It is a very nice shop with lots of lovely and slightly unconventional sofa's to sit on when a bit jaded, and fab hand creams to try but it is definitely let down by the bathrooms. And the poor lady who was in a wheelchair and couldn't get up the couple of steps into the loos on the fourth floor must've been really fed up. The disabled loo was on the second floor I think - maybe I should've tried them out.

Cafe Nero near Shafetsbury Avenue was appalling in the toilet stakes (I'm getting an idea for a book here, can you tell what it is yet...?). They had loo paper everywhere, more cramped stalls and blue lighting - what's that all about? It was like they were trying to detect old blood on the walls before I'd even been in there!! I could tell there was no soap so I declined to use that one and had enough padding to wait until I got to the Palace Theatre. Now there's a proper toilet. Plenty of room, lots of cubicles, easy to use bins, no shortage of loo paper, lots of soap and working hand driers, thank god for the Palace.

If I you do still want me to visit while it is my time of the month, i.e. more often than not, I will need room to move around the lavvy, a bin to pop the overzealous packaging in, decent uncrumbly loo roll and soap to clean up afterwards please.

M&S may well do wonderful food but often there is no loo roll, the bin is coughing up paper towels and the squirter is devoid of soap in the Kidderminster branch.

I'm thinking of ordering one of those hospital hand sanitiser thingy's to attach to myself when out. . .

Edited based on comments.

Wednesday 18 April 2007

Did anyone watch Newsnight?

I spoke to my friend Jason yesterday and he told me that there would be a feature on contaminated blood products on last night's Newsnight. The Independent Public Inquiry into Contaminated Blood and Blood Products was due to kick off today, so I assumed that was why Newsnight were running the story.

You'll normally find me in bed at 9pm so to stay up later was a challenge but with the help of a C.S.I. double header I just about made it to 10.30pm. Ade had gone to bed because he's been up at 5.30am that morning in was going to be doing that the following morning too.

I thought that having my own experience of infection with Hepatitis C, having been to many Haemophilia Society events and being involved in the campaign for compensation at one stage, the content of the report would be familiar to me.

I watched with growing sadness and disbelief as I realised how little I really knew. Both about how unsafe clotting factor products had been used even after safer treatments were available, about the possibility that bleeders were used in studies to understand the risks of HIV on human beings, how a child had been infected in the in 1983 at the age of 2 and had died at the age of 7.

I heard how a number of haemophiliacs had been infected and diagnosed with HIV and HCV and had not been told - some for even a number of years. What kind of medical care was that?? A kind that had a horrible sense of familiarity to me.

I was shocked and angered by the continued lack of responsibility that was being shown by the Department of Health. What was their sympathy worth...?

I really admire the people who appeared on the programme last night, they have been fighting for justice for many years at the same time that they are desperately fighting destructive viruses. I hope that the Inquiry will in some way take the fight forwards and finally get some acknowledgement, answers and some admission of wrongdoing. I hope that those still living with HIV, HCV, vCJD and who knows what other viruses will get some justice. I hope.

I am terribly sad about Colin, Pete and over 2000 other people with bleeding disorders who have lost their lives to these viruses. I am dedicating this post to all their memories.

xx

Link to the Newsnight feature - Blood Trials (thanks Ian):
http://news.bbc.co.uk/player/nol/newsid_6560000/newsid_6566300/6566349.stm?bw=bb&mp=rm
You'll need a media player to view it.

Link to the Indepent Public Inquiry website:
http://www.archercbbp.com/

Tuesday 10 April 2007

Pro Crastination

I am pro crastination. I am procrastinating.

I am trying to write an evidence statement for the Independent Public Inquiry into Contaminated Blood and Blood Products. To be precise this is my challenge:

"please in the space below outline in approximately 700 words your experience and knowledge in connection with Contaminated Blood and Blood Products.

It would be very helpful to the Inquiry if you would describe as best as possible the following:- When and under what circumstances were you first advised that you or a family member were suffering from Hepatitis C and or HIV or vCJD? Also how have these illnesses affected you and or your family?"

700 words.

I am still finding it hard to believe that an inquiry has been launched at all. I'm struggling to accept that it will be independent and that it will get to the root of why and how the NHS supplied contaminated blood products to those of us who relied on it to merely stay alive. I am uncertain what exactly the inquiry will achieve and am unsure what I'd like it to achieve.

It cannot save any lives. It cannot bring back those who have died. It will not alleviate the pain felt by those who have lost friends and relatives to these viruses. It will not prevent people becoming ill or provide any cures for those still battling on.

However, I will do a statement and I am pleased that Lord Alf Morris has managed to get an inquiry, towards which he has been working for years on behalf of those with bleeding disorders. I've met him, he's a good man. If the only thing to come out of it is some recognition of what people went through and are still going through then I think it is worthwhile.

I have found many reasons not to start writing my statement yet. I've been in London watching Spamalot. I've been entertaining my mum and dad (who have both written their statements already). I've been spending time with friends in their gardens and mine. I've been enjoying myself and feeling better than I have in a while. I need to think about the bad stuff - to re-live the diagnosis of HCV and the treatment. I need to remember how it felt then and how I am still finding my life is being determined by my health - the way it has been since I found out about the HCV. I need to face the fact that every time I inject there might be more viruses out there that I might be putting into my vein - or maybe they're already there? It's unlikely I know, but is it impossible?

700 words.

When I have stopped procrastinating and have written my statement I'll maybe post it on here as well as on the inquiry website. (http://www.archercbbp.com/index.php if you want to see more)

I was going to do a post on what a fantastic weekend I had and how exhausted I am now, and then I realised what I was avoiding. I'm still avoiding. Think I'll blog my lovely weekend next ...

Friday 6 April 2007

Eight other things that keep me awake ...

1. "Lights, Camera, Action" - Ade's back from the pub then. He's hopeful. There's no party in my pants I can tell you, only a bloodbath - no-one's getting in tonight...
2. Rustle, rustle - the pesky kids outside are trying to sneak an oil drum off the back of Ade's pick up truck
3. Boooinnng - I bounce out of bed and commando crawl to the window to see that there are no pesky kids and truck is a-ok (that's on my knees not knickerless)
2. Ackackackackackack - the dulcet tones of my husband's snores - he never used to do that - what's gone wrong...
4. Smack - my clock falling over the the bedside table, eeek there's a polty geist!!! Miaaaow. Oh I see - only Flashy the pussy.
5. Wink ... wink ... wink - hmmm should've switched my radio off at the wall when leaping across room to catch oil drum thieves, the LED is sending an SOS to the sleep police.
6. Arrrrrrrrrrrrrarrrrrrrrrrr - something leaps on the bed puts his head on my pillow and his paw in mine - not Ade returning from the pub in a frisky mood, but Smudge come to check we're ok.
7. Tiptoetiptoe - I have a very close relationship with my bathroom in the night and visit the wc at least three times to make sure it is still there. I can get all the way down a flight of stairs without any lights or toe stubbing.
8. Whiirrr - the sound of my tiny brain desperately trying to compose my next blog entry - ooo what about all these blooming things keeping me awake...

Night night.

Wednesday 4 April 2007

Oh for the love of jabs

I tried the new treatment regime straight away and after the two days of 1000 units every 12 hours the bleeding had slowed right down from heavens open heavy to mild shower managable. This is great, thunk I! However by the time I'd gone back to the 2000 units once a day and was on the second day, my heaven broke loose again. Just so you know that is merely a metaphor and I don't really think of my poonani as heaven - that's for sure ;))

After another day it stopped altogether. Hurrah! This was after 13 days of bleeding though, so it was difficult to tell if that was natural stoppage or doc's new super dooper treatment plan.

I gave him a bell. (A nice cow bell from switzerland / a bluebell / or a bicycle bell - you decide:))

He said the next time I was to try a slight variation:
1000 units every 12 hours for 2 days
1000 units at 24 hours for 1 day
1000 units every 12 hours for 2 days
1000 units at 24 hours for 1 day
and so on ....

On the sixth day he asked me to pop in for a levels check, to make sure that I wasn't going to overdose on the factor VIII and clot up all together, like a black pudding - thanks Jae :)

I went up to hospital yesterday for that blood test. I started bleeding again just a little last week, so began treating straightaway. Sometimes I do bleed a little, then stop for a day or so, and then start again with a vengeance. This time after the second day of twice daily jabs I'd dried up like a Peak District reservoir. I thought, maybe I'm not on yet and didn't have the single jab the third day. Biiiig mistake, the dam was broken that night and I was up and down to the loo three times with no sleep.

I carried on with the injections and popped up to brum yesterday. 25 miles each way to have one vial of blood sucked from my arm. I was feeling pooped anyway so driving up there in a daze didn't help much.

When I arrived I met the new nursie who's just started in the Haemo Unit from the ward round the corner. She was very nice but a little nervous I think. She said she's not used to having patients who can specify which vein they use. I gave her my best vein - inside left elbow - generous I thought, as I'm having to use it every second jab at the mo. It's a dead cert that one - never have probs getting the needle in or it staying in.

She missed it. Twice. Apparently she's good with venflons, hehe.

I suggested she try the back of my hand - which hurts loads more but is fairly easy to use as I never stick it in there. That was fine and she filled her test tube.

Now I just gotta wait for those results and carry on with this two days 12 hourly, one day 24 hourly business until I'm told other wise.

Tell you what though, it's no fun having to drag myself out of bed early just to stab myself. But I need to do it in good time so that I don't have to inject too late in the evening, I get no good after 9 ish. Too tired and uncoordinated. And stroppy - Ade can testify to that.

As we stand I'm 7 days into this period and so far, touch laminate, it has been no where near as heavy as normal. I definitely find that on the 24 hour jab day it starts to majorly increase towards that injection time, so I think there is still some work to be done before I'm totally understood.

Never given myself so many jabs before tho!

And we're meant to be off to the big smoke this weekend to see Spamalot and see some friends, so I really hope it's not too bad.

Either way I'll have a boot full of factor and san prods just in case ...