Tis the Season to be Jolly!

Wishing everyone a very

Merry Christmas!!

The turkey is in...

The goose is stuffed...

The sausages are baconed...

The trifle is ready...

Have a scrumdiddleeumptious day!
I hope you get everything that you want from Santa.

Love Ros xxx

So I say...

Thanks for the Malteasers, the chocs I'm eating,

Thanks for all the joy they're bringing.

Who can live without it, I ask in all honesty,

What would life be?

Without a Twix or a Flake, what are we?

So I say thanks for the Malteasers,

For giving them to me.

On the 18th of December . . .

. . . my von Willies gave to me

four bleeding gums

three oozing scars

two nostril clots

and

a surprise period in Sains bur eees!


Seasons Bleedtings :)
X

On the first of December . . .

. . . my von Willies gave to me
a bleedi-ing belly button.



Hmmm.

Yes, I know - that isn't right. I'll have a jab and if that doesn't knock it on it's little button head I'll get it checked out.

Yes, I know - that is the Love Bugs nightie - sorry Louise :( but I'm sure it'll come out in the wash.

Half and half sleep / no sleep tonight - mebbe I'm excited bout Christmas - well it is December after all . . .

X

Tramadol 2

spoke too soon
saw the moon
all thro
the night
so sleep had been merely a co-incidence

X

Tramadol

for me
is the key
to a good nights slee
puh

X

Clots of Love. . .

I'm back home and pleased to report that this was the only time I've had an op and not had any bloody surprises! No post op bleeding at all, as far as I can tell. By that I mean the pain has been containable, not unbearable, and there has been no major blood leakages from any orofi or entry points.

Woo hoo for "The Plan"! It worked.

Thank you to Dr's L and W for keeping a close eye on me and my levels and making sure I was topped up with lots of lovely platelets and juicy clotting factor.

The op went well and discovered that I had some endometriosis which they heat treated and an inflammatory cyst which they lasered. My tubes were clear tho which is good, always nice to have clear tubes.

Doc A who put the scopes in said he couldn't really see if I had a septum in my womb cos there was too much blood squirtage any time he touched anything, so I could've probly done with higher levels prior to the op but at one point post op my factor viii was 271% and my Ricoh activity 194 - that's damn good for a Type III.

Now just resting up with a very bruised belly, chomping pain killers, injecting for a few more days, under exerting and waiting for my next apt in six weeks time to find out a bit more about what they saw.

Thank you for all the texts, emails, blog dedications, letters and phone calls of support - very kind and very much appreciated :)

Love and clots.

X

Is Nail Polish a No No??

Tomorrow I'm off into hospital. I'm going for some internal investigations - a laparoscopy and hysteroscopy to be precise.

My gynaecologist has told me this is to look at the womb, tubes and ovaries, to deal with any ovarian cysts and to see if I have a septum in the womb. A septum is ably demonstrated in the sketch he drew for me below...

I think the little thing coming in at the top right corner is his hysteroscope, taking a look at the womb from above. Quite artistic don't you think?? I hope his handiwork inside me is a little more precise...

Not wishing to worry you but I had a d & c and laparoscopy when I was a teenager and it's not a particularly splendid memory with post-op bleeding into my womb and pelvis and weeks in the Duchess of York hospital in Withington having it all drained out time and time again.

But I am putting my faith in the haemotologists at QE and at the Women's Hospital in Brum, they are working together and have come up with (in a deep and dramatic voice) "A Plan".

This is good. "A Plan" is exactly what they need, what I need, to avoid any of the previously experienced blips - such as hitting a hepatic vein whilst doing a blind liver biopsy. Where they scan your side, mark the spot with an X and then stick a big old needle in to draw out a sample of your liver without actually being aware of what bleeding vessels are loitering under the surface ready to be ruptured.

That was a horrible time, more so for my husband and family than for me - I was just in pain and then in recovery in intensive care. The lesson was hopefully learned by my doctors that von Willies do not always do what you expect - in a bleeding sense of course - and from now on they do all biopsies on all bleeders via the vein so I'm told. In from the neck and down through the vein so there's no chance of any accidental damage.

The poor registrar who performed the biopsy was ever so apologetic and guilt ridden and really rather attractive and I'm sure he would have taken me out to dinner to apologise had Ade not been by my side during most of my stay.

So, my "Plan" (same voice) consists of taking my clotting factor levels after admission tomorrow - the day prior to the op. Then giving me enough factor to get me to levels of at least 100%. Then maintaining those levels by checking and, if necessary, topping up every six hours up to and beyond the op. Also they are going to give me a platelet transfusion before the op and tranexamic acid pills throughout - which should prevent any clots from breaking down, which as von Willie clots they are wont to do. I'll be kept in for at least 24 hours afterwards to monitor for any post-op haemorrhages.

Sound good huh?

Sounds like they are thinking about my treatment, anticipating problems and preparing for them, which to me is as good as it gets. I'm happy. I think Ade is, although he is bound to be worried because his only experience of me being hospitalised was the cock up occasion. Hopefully a straightforward time in hospital will restore some of his faith and ease his concerns slightly?

I guess I'm used to being in hospital, used to handing over control of my welfare to healthcare teams and not worrying about it. After so many years. I think if I was watching someone else having an op then I'd be far more worried about them than about my own - funny that.

When they ultrasounded me earlier this year to see if there was anything adding to my heavy bleeding the scan lady (radiologist?) thought I might have endometriosis. The gynae thought that it looked more like a septum in the womb - see artwork above. This is where the top wall of the womb is either extending down into the womb or is fallen down into the womb. Looking at it from below (laparoscopy) will show if there is endometriosis or a septum. Looking from above (hysteroscopy) will tell him if the top wall of the womb has grown down or fallen down. Then he can deal with both options. Does any of this make sense?? I'm hoping it will when he comes and sees me tomorrow!

I'm supposed to be in for about three days and they're doing it all under general anaesthetic which I much prefer, could do with a good sleep!

My main concern right now is - should I touch up my toenail polish for the procedure or do I have to remove all nail polish for the op - help, I can't remember??!!

I'll let you know how it goes...

xxx

Random Acts of Bloodloss

Not terribly dramatic I know, just a few little bloody snippets . . . won't impress you haemo's out there!

X

Normal Service Will Be Resumed...

... honestly it will! Just not sure when.

X

Bleeding Stats for September

I know! You're overwhelmed with statistics and you never even liked them at school let alone in your web browsing leisure time! I'm sorry - I never got round to doing Augusts so I thought I'd just stick em both up in one go.

This was my 29 day period for September- taking Norethisterone 5mg 3 times a day - yes, I did say 29 days! It would appear that the hormones are reducing the volume and increasing the length - hurray. It also means that whereas before taking the Norethisterone I could tell when I'd start a period, now I don't have a clue and pretty much feel like I'm bleeding all the damn time. Less bleeding though, so that's good, right?

Mooncup

Not used this month - after my initial experience I was a teensy bit reluctant, however if the level of bleeding remains lower then I will have another go in November. Anyone care to join me in the Mooncup experiment?

Tampons

Heavy 7

Sodden to the point of being past absorption, falls out when string gently pulled, lands like a broken milk bottle, often accompanied by large and frankly revolting looking clots.

Woohoo! Very little excessive bleeding and that feels soooo good.

Medium 49

Some traces of white left on tampon, may be clots hanging on for grim life but not always, takes a little pull to remove.

Medium is the new heavy. But if you think that this is over 29 days then that's actually not bad at all.

Light 44

Slightly bloody, generally at least half covered, takes a sharp pull to remove, not many of these as you can see.

As expected this figure has risen as the hormones kicked in.

Towels

Heavy 0

Sodden to the point of leaking out all over clothing and causing “ooo I just sat in something brown” embarrassment, feels as heavy as a suitcase exceeding the airline limits, requires careful disposal not to promote leakage.

Now that's good. No leakages.

Medium 23

Some traces of white left on towel, could squeeze in a few more ml of blood to the super absorbent core if you were really determined.

Again - not bad for a 29 dayer.

Light 20

Slightly bloody, looks less like road kill has occurred in one’s pant and more like you’re having a fairly normal monthly bleed.

Up on the last couple of months but I don't care - this is light soiling (ooo I hate that word - uck).

The increase in length has surprised me this month, in fact I've not actually stopped bleeding since the 2nd September and have just started bleeding a bit heavier over the last couple of days.

But hey, I'm still not losing anywhere near as much blood as I have been and it may improve over the coming months even more. I'll keep popping the iron pills and soon I'll be raring to go - just you watch :)

X

P.S. Ade and I are off on our jolly holidays for the next couple of weeks, so feel free not to check in because I doubt I'll be updating this while I'm away. Saying that there may be an internet connection in the hotel - hmmmmm . . .

Bleeding Stats for August

This was my 16 day period for August - started taking Norethisterone 5mg 3 times a day when this period started.

Mooncup

Full to overflowing 11

Totally full to bursting, clots sloshing about, dam bust effect on towel, which was an absolute necessity, very messy.

Of these 8 were in the 10 hours that I posted about. The other 3 were a few days later and I still had the same outpouring, thus have not used them yet since.

Half full 1

As name suggests.

Tampons

Heavy 38

Sodden to the point of being past absorption, falls out when string gently pulled, lands like a broken milk bottle, often accompanied by large and frankly revolting looking clots.

This figure is almost a third of the amount in July - a sign that the pills kicked in almost immediately.

Medium 14

Some traces of white left on tampon, may be clots hanging on for grim life but not always, takes a little pull to remove.

Just over half of July's quota.

Light 4

Slightly bloody, generally at least half covered, takes a sharp pull to remove, not many of these as you can see.

More than July and expecting this figure to rise as the hormones kick in.

Towels

Heavy 9

Sodden to the point of leaking out all over clothing and causing “ooo I just sat in something brown” embarrassment, feels as heavy as a suitcase exceeding the airline limits, requires careful disposal not to promote leakage.

This figure went up but that was mainly achieved due the Mooncup period, as it is now known :)

Medium 9

Some traces of white left on towel, could squeeze in a few more ml of blood to the super absorbent core if you were really determined.

This is an improvement on last month.

Light 0

Slightly bloody, looks less like road kill has occurred in one’s pant and more like you’re having a fairly normal monthly bleed.

This although it was still a fairly lengthy bleed was much improved over July and made life much easier to manage. However because I didn't know what to expect I still was prepared, as all good Brownies are, for an explosion of menstruation at any given time.

X

Love is flower like; Friendship is like a sheltering tree.

A flower's appeal is in its contradictions - so delicate in form yet strong in fragrance, so small in size yet big in beauty, so short in life yet long on effect. ~Adabella Radici

Bread feeds the body, indeed, but flowers feed also the soul. ~The Koran


On Thursday 27 September Ade and I had our 4th wedding anniversary. We've been together for 8 years and 5 months altogether. On Thursday the flowers pictured above were delivered. The first flowers Ade has ever given me in all the time we've been together.

He doesn't like giving flowers because they die - very true - but they do make me feel special and it is sooo lovely to feel special. Thanks hon.


This quote is for you Ade, but don't let it put you off:

Why do people give each other flowers? To celebrate various important occasions, they're killing living creatures? Why restrict it to plants? "Sweetheart, let's make up. Have this deceased squirrel. ~The Washington Post


Happy Anniversary :)

X

Who Do I Think I Am?

Since I decided earlier this year to find out more about my birth family I have made a little progress:

• Rang Isle of Man Adoption Service - found the number on-line and spoke to a social worker who gave me the number of the Birmingham branch of the National Children's Home (NCH) and a name to contact, to try and get my adoption records.
• He said I would need proof of ID and my adoption certificate in order to access my records.
  
• Rang NCH Birmingham - left message for the woman I needed to speak to, asking for information.
• Asked mum and dad for adoption certificate.
• Mum and dad gave me more correspondence they received and notes they made at the time of my adoption - they have a record of my birth name.
• General Register Office - they manage the Adoption Contact Register which exists to put adopted people and their birth relatives in touch with each other if that is what they both wish. Part 1 of the Contact Register is for adopted adults to record their wishes for contact or no contact with birth relatives. Part 2 of the Contact Register is for birth relatives to record their wishes for contact or no contact with the adopted person.
• Sent application to go on part 1 of Adoption Contact Register - recording wish for contact.
  
• Rang General Register Office - they maintain a record of adoptions made on the authority of courts in England and Wales in the Adopted Children Register. At 18, an adopted person can apply for a certificate of their original birth registration, via the Access to Birth Records service at the General Register Office. The General Register Office cannot help with accessing IOM birth records. Gave me a number to try in IOM.
• Rang IOM General Registry - said they might not have records as would have been handled by NCH but are sending an application form.
  
• Mum and dad found small birth certificate - looking for adoption certificate.
• NCH Birmingham - the woman rang and is sending me a form to fill in. They are very busy and warned that it might be a while before anyone got back to me.
• Filled in and posted NCH Access to Personal Records leaflet I'd picked up.
• Filled in and posted NCH Access to Birth Records for Adoptees leaflet I'd picked up.
• Received application form for Access to Birth Records form from IOM General Registry - may be the same as NCH form which I've already sent so I'll wait and see results of that one first.
• Registered on Ancestry.co.uk - looked for any people with my birth surname from IOM - no matches.
• Received letter from NCH Birmingham - they do have records of my adoption, due to their operating a waiting list I will be contacted in 4 - 6 weeks for an appointment.
  
• Received a letter from the Adoption Contact Register to inform me that no relatives were registered on part 2. This means no-one has registered wishing contact with me, but also that no-one has registered wishing no contact with me.
• Appointment come through for NCH Birmingham.
• Saw social worker at NCH Birmingham - discussed the implications of tracing birth family, possible outcomes, what I was hoping for, what I was expecting, best and worse case scenarios. She asked if I wanted to look at my adoption record. Ade and I read it all. From before my birth up to my transfer to Frodsham and my adoption. She asked if I wanted copies of all the information in the file. Obviously I said "Yes please!"

So here it is - my adoption file!

It contains my little period of previously unknown personal history. The clues with which to trace my birth relatives and my own ancestry might well be inside.

Will the clues be there? Will they enable me to find my roots and follow them into my past? Will I find what I'm looking for? What is it I am looking for??

It remains to be seen...

Full Moon

Description of Mooncup Activities written at time of use - 14 August 2007

1.00pm
Insertion

2.30pm
Towel totally saturated.
Mooncup removed with a little difficulty.
Suction was fine so no leakage due to inaccurate insertion.
Cup totally full up.
Sloppy clots in cup and falling out after removal.
Very messy.
Shook out into toilet bowl.
Flung into sink.
Blood on carpet.
Must wipe with loo roll first next time.
Washed and reinserted.
30ml collected - many more ml in towel and flooding out

3.15pm
Cup full.
Clotty.
Messy.
Shook out cup in loo.
Washed in sink and reinserted.
30ml collected - many more ml in towel and flooding out

5.00pm
Cup full.
Sloppy clots.
Very messy.
Cannot remove without getting hand covered in blood.
Much less hygenic than tampon removal.
Difficult to clean the cup with toilet tissue without getting blood everywhere.
Removal is accompanied by squelching noises as suction is released.
Can't imagine that in a public loo.
Washed in sink and reinserted.
30ml collected - many more ml in towel and flooding out

6.30pm
Full.
Messy.
Tried to just use toilet tissue to clean - as if in public loo.
Not very good job.
30ml collected - many more ml in towel and flooding out

8.00pm
Half full.
Topped up with sloppy clots.
Mmm lovely.
Shook out cup in loo.
Washed in sink and reinserted.
15ml counted

9.30pm
Full.
Clotty.
Messy.
Noisy squelches.
Shook out cup in loo.
Washed in sink and reinserted.
Yuck.
30ml collected - many more ml in towel and flooding out
Definitely leaking and saturating towel quicker than when using giant tampons.

10.00pm
Full.
Clotty.
Messy.
Sticky fingers.
Shook out cup in loo.
Washed in sink and reinserted.
30ml collected - many more ml in towel and flooding out

11.00pm
Full.
Clotty.
Messy.
Sticky fingers.
Shook out cup in loo.
Washed in sink.
30ml collected - many more ml in towel and flooding out

GIVEN UP!!

Total collected over 10 hours = 225ml

Do you remember this quote from an earlier post:
"In order for a period to be considered heavy - according to the Mooncup website - one would be losing "80mls+ produced over the whole cycle"."

I've produced 225 mls in 10 hours - that's 1/36th of an average 15 day cycle for me, and that doesn't include the extra extreme loss into the towel and whilst on the loo, admittedly it was a heavy day but still....

Not hugely surprising perhaps, but from wanting to measure my blood loss, I now find it a daunting prospect - I'm not sure I want to know exactly how much beyond normal I am thanks very much.

I tried the Mooncup again a couple of days later. A day I thought was less heavy, more moderate blood loss. Same problem. Did not take many minutes to fill up. Then leaking sensation.

Forgot to mention - when the Mooncup is overflowing I am treated to sound effects. When I move I squelch. Now that's delightful.

X

Am I over the Mooncup??

It has been some time since I blogged my initial cup insertion. Almost two weeks in fact. So what's the score? How's it held up? What's it held up? And what's it not held up?

Well...

That first 3 a.m. go was interesting to say the least. Having written my post and gone back to bed at about 4 a.m. I pondered for a while longer unable to sleep. How would I know when the Mooncup was full? I obviously had a massive, mattress sized night time towel on, so if there were to be any overflow it wouldn't stain my burgundy sheets and my waterproof mattress protector. But I was thinking about the suction. The suction that kept the Mooncup in place. Clever idea. Did it mean that there would be no spillage? Nothing would get past the vacuum sealed rim? Hmmmm.

If that was the case then what? After the cup was full? Would the cup be as tight as the Hoover dam. Would the flow then back up? Could it reverse fill my womb to overflowing? And with no outlet would it leech through my blood vessels and into the rest of my body? Pushing its way slowly up me, filling me up like a hot water bottle. Until there was just a little air left in the top of my head. Would bloody tears spring from my eyes? That's happened in the past - from a nose bleed not being able to come out my nose quick enough.

I awoke a few hours later and felt around for seepage from my bodily orifi - nothing - phew!

I made my way to the loo. Night time towel unsullied - wow - that's unusual. This thing was good! I poked my fingers around trying to find my little stalk and pulled. Now I could feel the suction. As it slowly released I braced myself for a dambursting outpour. Closed my eyes and pulled...

Nothing.

No splashing, no gushing, no noise whatsoever! I opened one eye. Clean bowl. I opened the other eye and brought the Mooncup into my line of sight. Nothing in it! Godammit!

There was a tiny trace of blood around the rim but that was it. Had I had some kind of allergic reaction? Had my blood been repelled from the silicon cup? Was it waiting like an ocean that had been parted, ready to bomb on out the moment the coast was clear? I braced myself again...

Nothing.

The bleeding had stopped. Pretty much the instant I inserted the Mooncup my bleeding had stopped. Now that was annoying.

I tend to be an unpredictable bleeder at the best of times. My bleeding patterns are generally undefinable except by being consistently inconsistent. So it wasn't an impossibility that my period had started as a gusher and dried up over night.

This doesn't mean it's over for this month - oooooh noooo. It will be back. Sooner or later. Sooner probly. Heavier or lighter. Heavier probly. Who knows where, who knows when... Not me that's for sure.

I cleaned out my cup and popped it back in its little baggy for next time.

Next time came within four days...

The Wrong Trousers

The White Trousers are indeed wrong - very wrong.

When I was a teenager going through period hell there are a number of incidents that remain indelibly etched in red in my rather shabby memory.

First was a sponsored walk that was organised by my school every year. You could choose whether you wanted to do the 5, 10 or 20 miles. I had previously done the 5 miles and although I couldn't walk for a week afterwards cos of ankle bleeds I was determined to do the 10 mile the next year with my friends.

However, dodgy joints apart, there was something different about me that year. I had hit puberty - like a truck full of ketchup ramming into a bridge support, there was red stuff everywhere. I was getting used to carrying masses of sanitary towels, feeling like I was in nappies again - and getting taken to the hospital for factor injections or blood transfusions every month.

Needless to say I was a bloody minded 13 year old :) and decided to enrol onto the 10 mile walk against my parents' better advice. With them assuring me that if I needed them I should get one of the Marshalls, posted every few miles around the course, to give them a bell. I'm not going to need that I thought!

Off I set. I seem to remember it was a horrible day. Raining and windy and cold. I was wearing a very untrendy mac and hiking boots. Waterproof trousers would have been useful but I think I thought I was too cool for those - yeh, in that mac!

The course is so designed that there are toilets situated fairly regularly - either public or private at people's houses, opened just for the day of the walks. I used them all. I was no more than two thirds of the way round when I ran out of towels. And I'd taken plenty, I'd thought. I didn't want to give up so I kept going. Walking in the rain. Getting wetter.

It wasn't long before I was aware that my 'nappy' was feeling more and more sodden. I felt uncomfortably duck like in my gait, with a waddle and a bulky posterior. I kept walking. Trying to ignore the leaking sensation, less of a leak more of a deluge by now.

At the next checkpoint I gave in and asked the Marshall to ring my dad. When he arrived I had to use my mac as a seat covering to protect it from the blood that was flooding through my jeans. Dad drove a defeated daughter home.

The next time I specifically recall a leaking incident was the next summer on a Quaker youngsters holiday in York. I was 14. There were probably about 60 of us all staying at the Mount School and having trips out and doing activities and crafts. One morning a large group of us were in a meeting of worship. Sitting in Quakerly silence for half an hour, as we did most mornings. I was wearing a light blue pencil skirt, my favourite, and a blue top.

Part way through this meeting I felt something in the pant department. I was mid-period and wearing a sanitary towel but in those days they were much less efficient at absorbing the blood and it wasn't long before I could sense that the towel was failing in its containment efforts. I wasn't very confident and didn't feel able to get up, walk out of the room and go to the loo to take preventative measures with all my peers sat in silence watching me. I didn't want any attention drawn to myself, so I sat there in the corner, feeling the blood flow and waiting for the meeting to end.

Once it had ended people took their time in leaving. I tried to wait til the room had emptied but I realised by that point I just needed to get out of there. I had no jumper or jacket on to wrap around my waist and conceal my embarrassment so when I stood up one of the lads saw the back of my light blue skirt and said

"Ewww, you've sat in something!"

I made a great show of shock horror, craning my neck to see the offending stain, examining my seat and suggesting offhandedly,

"I must have sat in some chocolate..."

And exited stage left tout suite! Sounds like I was cool about it, but believe me as a girl of 14 who cared what others thought, I was mortified. Hence I suppose that has stayed in my mind ever since.

I don't think I wore anything light coloured after that. Not for years. Not until I was on extreme hormone pill doses which was the only thing that calmed down the bleeding. And that had to be taken continuously because any gaps and bleeding was still horrific.

I always use burgundy coloured sheets - I've been drawn to that colour ever since I first went to college and needed to supply my own sheets. Just recently I've started using white ones and immediately reminded myself why that wasn't a good idea by bleeding all over them from a dicky gum!

So why the white trousers?? Why indeed, uncertain, Helen, anonymous - you are quite right to think me insane.

I bought them about 4 years ago. I was still on continuous hormone replacement therapy and had been for about 15 years. So 15 years with no periods whatsoever. None. Still never bought any white trousers cos you never know when you might scratch yourself on a bramble, or meet with a cat's claw, either of which can cause a good two or three hours of persistent bleeding - more than enough to ruin any white clobber.

I think it was coming up to my wedding and we were planning our honeymoon. I'd gone to Debenhams to look for some holiday clothes and found the trousers. I wouldn't have even tried them on if they weren't in the sale :) But they were and they dazzled me into thinking I'd look glam and gorgeous on my honeymoon, swanning around like a film star in white pants. I forgot my severe bleeding condition in an attempt to be a foxy lady. I bought them.

Wore them once on the moon and immediately spilled red wine or some other such coloured concoction down them. Since then they've pretty much been relegated to the 'wear on holiday if you are going somewhere very posh but not if you're likely to be eating or drinking whilst there' category - i.e. never worn!!

Until this year when the trend for super long tops came back in.

Aha! I now have a couple of tops that are floaty and loooong. Down to mid thigh if not a tad longer. I can wear trousers with my bum concealed. And that to me means I can wear enormous knickers with night-time sanitary towels and no-one will ever know!! Hurrah!!

So. I got out my White Trousers. I've even worn them a couple of times. Admittedly not while I've been mid-period, i.e. most of every month. But I did wear them with said floaty number for a meal out with hubby. And managed to keep them clean.

So why did I wear them last week, when I'd just started bleeding? And with a top barely skimming my buttocks - there I've said it again! What possessed me?? God only knows... All I can say is that I had a handbag bursting with sanitary prods, I kept my back to the toilet door and never ventured more than 3 metres from that door. I went to the loo more often than even I with my toilet addiction normally do and I didn't relax the entire evening, not once. But it was my sister in laws celebratory engagement drinks and if you can't say to hell with it I'm wearing my White Trousers and damn the bloody consequences then, when can you eh??

You gotta rebel sometime, even if it is only in the form of light coloured clothing ;)

X

Mooncupdate...

Cheers! Or perhaps more aptly - Bottoms Up! Or if we're being pernickity - Up Bottom!


Was thinking of taking a 'half full' photo for the celebratory glass of red / cup of red effect. Then realised that would be one blood sodden step too far! This post would already receive an X in the gore ratings but that's without a photo of me hoisting aloft a measure of my own fine vintage.

The news is this. It is 3a.m. and I'm mooning as we speak. I'm cupped up. Cupping myself. Full up with cup. The Mooncup's up! It's up! It's ... no, it's still up and showing no signs of coming down.

Well fancy that.

I was sat, only minutes ago, on my porcelain chair, contemplating my Mooncup. Earlier tonight we were on our way out to celebrate Ade's sister Jackie's engagement - by way of an enormous sign, on a lorry, parked up outside her office window, Bob you are a surprisingly creative chap and many congratulations to you both - when I felt something dribble. Not enough to fill a milk bottle but more than enough for a thimble. Given that I didn't have a thimble the choice was Mooncup or tampon. As we were going to the pub and I was wearing white trousers with a top barely skimming my buttocks (now there's a phrase I've always wanted to use!!) I needed a safe option so plumped for the latter, purely on the basis of experience. Thinking about it now, that was flawed logic based on my history of bloody bottoms.

After two near misses in the pub in the bloody pant department we were back home. On my way to bed I automatically inserted a Super Plus and then thought,

"Really should be trying the cup. That's it," thunk I, "if I'm up in the night" (if I'm up in the night hahaaa that's a wheeze) "I'll pop it in and see what happens."

So back to my porcelain chair at just before 3a.m. I'm sat perusing my Mooncup. It's too big!! I may not be a vestal virgin but it's no Eurotunnel and this baby looks pretty big to me! Hmmm. It looked clean and rubbery and really I didn't want to spoil it or soil it, but what's a trial if you don't use the thing.

I folded it up on itself as instructed and popped it in. Now when I say popped, I really mean shoved. With some resistance of a rubbery nature. Luckily the bleeding was such that once inside it was soggy enough to move into position. The position, that is, I wasn't sure of.

The instructions stated the cup should be worn lower down than a tampon, just inside the entrance to the vagina. Now I think I got it just about in the right spot. I could feel the bottom of the cup just inside and the stalk was poking out for easy removal.

According to a commentator on my last Mooncup post and to the leaflet accompanying the product - which is quite frankly enormous and as weighty as a loaded tampon, but does contain instructions in more languages than the Pope himself speaks - one should trim the stalk of the Mooncup to a comfortable length. Well, I hadn't planned for this middle of the night moment. I had no scissors or other trimming device to hand. Sod it. I'm only going to be horizontal - how proddy can it get?? I'll trim it in the morning.

And here I am, writing this long hand at my dining table at 3.38a.m. thinking "that feels weird." I'm not sure if it's the Mooncup itself . . . in fact, I can feel the Mooncup cup inside me - I presume I'll get used to that. But the stalk is definitely gonna have to go! The actual sensation is less prodding and more reminding me of a time I had a corrugated card contraption inside me to supposedly drain off internal bleeding. It was held in place - i.e. stopped from whooshing up inside me by the force of my vaginal suction :/ - by a carefully positioned baby's nappy pin. This stalky sensation takes me right back there.

My concern will be to leave enough stalk there to enable removal. I could trim it now I'm up and about I suppose, but having scrawled all this down after being unable to sleep, I'd like to get back to my sweet dreams thank you.

I'll leave the trimming and measuring - god, I sound like a Greengrocer, or should that be Redgrocer - til the morning.

Wish me luck.

X


There's 50 points to the person who spots the Fawlty Towers reference.

Many congratulations to Jac and Bob on their engagement - yippee!! xxx

Bleeding Stats for July

Thought I'd stick my pictorial bleeding chart stats on here for your delectation :) This was my 17 day period for July.

Tampons

Heavy 97

Sodden to the point of being past absorption, falls out when string gently pulled, lands like a broken milk bottle, often accompanied by large and frankly revolting looking clots

Medium 26

Some traces of white left on tampon, may be clots hanging on for grim life but not always, takes a little pull to remove

Light 3

Slightly bloody, generally at least half covered, takes a sharp pull to remove, not many of these as you can see

Towels

Heavy 7

Sodden to the point of leaking out all over clothing and causing “ooo I just sat in something brown” embarrassment, feels as heavy as a sandbag in Upton on Severn, requires careful disposal not to promote leakage

Medium 12

Some traces of white left on towel, could squeeze in a few more ml of blood to the super absorbent core if you were really determined

Light 2

Slightly bloody, looks less like road kill has occurred in one’s pant and more like you’re having a fairly normal monthly bleed

How does that compare ladies – am I making a fuss over nothing? Do tell me if I am :)

X

Fly me to the Mooncup

How many moon references can I think of ... I got a few more up my sleeve for future posts, don't you worry :)

I know you've been all excited, checking every day to see if indeed it is a yummy choccy pud, as uncertain suggested. Now that would be good. I'm sure you've not looked it up on Google like I would have ... well, I'll pretend you don't know and go with a big build up - are you ready???

Here it is - the Mooncup:


Oooo pretty isn't it! Love the little baggy and the pink ribbon.

Now what's inside ... is it a lip gloss? A delicate bracelet??

Ok, open the little bag and what's inside - it's a ...

Hmmmm, now what the heck is that?? Is it a plastic tulip? A baby turkey baster? A tiny bucket for removing flood water??

This should make it obvious...


Can you see that? Yes, it's a reusable menstrual cup!
Of course, you cry! I knew that all along!! How perfectly splendid!!!

Apparently they're big in the States according to my friend Helen - but then uncertain hadn't heard of it - or had you myc? My other friend emailed me and told me that she's been using a similar concept - the Keeper, nice name - for 6 years now. That's 6 years without using, without buying any tampons! That sounds good to me - it'll save me a fortune!! She's been recommending them to all her friends.

Here's the facts, as taken from Mooncup.co.uk:

The Mooncup is a reusable menstrual cup around two inches long and made from soft silicone rubber. It is worn internally like a tampon but collects menstrual fluid rather than absorbing. Unlike tampons the Mooncup is not a disposable product, so you only need to buy one.

It's not disposable, you see, you only buy one and re-use it. Re-use it. Hang on a minute ... how does that work??

The Mooncup can be cleaned in the same way as baby equipment: with sterilising fluid, or by boiling for five minutes in an open pan of water.

Oh I seeee ... you just boil it between uses, or stick it in a baby steriliser. How my gonna do that on a Pendolino to London? How my gonna do that at work, "sorry chaps just gotta boil the kettle to swill out my Mooncup". How my gonna do that at home when I can't leave the comfort of the toilet to head to the kitchen for a spot of sterilising because I'll leave the carpet looking like Jack the Ripper's been reincarnated...

You can still use your Mooncup in Public toilets. Simply take a small bottle
of water into the toilet with you and rinse it with this. Alternatively you
can wipe with toilet paper and give your Mooncup a thorough clean at a more convenient time.

Ahhh that's a bit more like it. In fact that's what my friend suggested, although she can get away with wearing hers for 24 hours on the trot generally.

The Mooncup will hold 30ml of fluid, which is roughly one third of the average total produced each period. A light seal is formed with your vaginal walls allowing your menstrual fluid to pass into the Mooncup without leakage or odour. You will probably find that you need to empty your Mooncup less frequently than you currently replace towels or tampons.

The average total produced each period is 60ml - now that's interesting. That's what appeals to me, not only emptying less frequently than I currently replace tampons - sometimes as often as every half hour - but that I can actually measure my blood loss. Does that sound totally weird?? I'm curious. Curious to know just how much I'm actually losing each month. I'm not getting that anaemic - HBC 11.2 (June) and Ferritin 12 - so therefore I can't be bleeding that much, right??

In order for a period to be considered heavy - according to the Mooncup website - one would be losing "80mls+ produced over the whole cycle". Will I be anywhere near that? I think so, knowing my tampon stats but we'll see.

I'm going to give it a go next period - in a week or so if my menstrual calendar is at all predictable, which it usually isn't!! I'm not entirely keen on the cleaning the cup out in the sink bit, or the squatting to get it in and out, or wearing it lower down the vagina than a tampon, or trying to remove it without spilling blood around like a chocolate fountain. But - I do like the idea of using less towels and tampons - from an environmental and economicental and mental point of view, I like the idea of accurately (if my hands are steady and the things not overflowing:) measuring my blood loss, and I like the idea of leaving it in and forgetting about it - maybe being able to walk into town and back without a public toilet dependency, maybe going swimming even??? It's possible apparently.

Wish me luck and send me bathroom cleaning products!

X

My Mooncup runneth over...

I have been given the opportunity to try a Mooncup.

I will use it and to log on my blog how I get on.

Have you heard of the Mooncup? I hadn't.

Do you know what it's for? I didn't.

Has anyone reading this ever tried one??

Please let me know how it was for you...

Who am I again?

Actually, it's not who am I?
Or where do I come from?
Or even - is there anyone out there?

It's more a case of mild curiosity and the Manx cat.

As an adopted person I have never felt any undeniable desires to trace my birth family. I was adopted at about 3 months old and have always felt totally happy and a part of that the family I grew up with. Mum and Dad told me from the very beginning of my memories that I was adopted and I never felt like I didn't know who I was. They made me a scrapbook to explain where I came from - how I'd flown over from the Isle of Man and how they'd come and picked me up from a children's home in Frodsham.


My brother who was also adopted had a different background and birth family to mine. He was adopted at the age of three and so had a history prior to coming to live with us. He never seemed as comfortable or settled in our extended family. He had been taken in and then rejected a number of times before coming to be with us and I believe that affected his ability to trust those who were supposed to care for him. I think he felt like he was obviously different and found it hard to accept this new family at face value. He looked into his background as a teenager and traced his birth family over time, becoming close to them and developing relationships - these weren't always easy but helped him understand himself I think. This in turn has perhaps led to an acceptance and appreciation of the parents and family that brought him up?

My lack of desire to find out about my birth family was purely a sign of my sense of belonging to my new family life and a happy childhood. We had a fair few problems to handle but I felt that I had a strong and loving family, dedicated to each other and of which I was very much a part.

When I hit 21 I remember thinking maybe now would be a good time to look into my past, where I came from. It was a milestone. I was in my final year at university and had plenty of family and friends to support my quest for information. However something stopped me moving from thought into action. That, thinking back, was Hepatitis C. I had found out in 1991 at the age of 17 that I had the virus and whilst it had not affected me at all and life was continuing as if I'd never heard of the virus, I felt like I couldn't look up my birth family and say:

"Hello, it's me, your long lost daughter - and by the way, not only have I got a severe bleeding disorder but I've also got hepatitis C - now you gonna make me a cup of tea or what . . ."

This was enough to put me off the idea and to get on with life and what that threw at me. Again there were no feelings of dissatisfaction or of incompleteness, I suppose I had other things on my mind.

This year I have again been having health problems, both bleeding and chronic fatigue. I have had more time off, which has given me time to think about my future and surprisingly this had led to me thinking about my past.

I've realised the longer I leave finding out about my birth parents, the lower the chances of finding them - who knows what's happened to them, where their lives have taken them over the years. It's not as simple as looking them up on the internet and getting an address and bobbing on round. Or is it?

I've acknowledged that I am curious about them. Purely in terms of - will there be any family resemblances? My adoptive family share many features and personality traits which link them together - I do miss that, is there someone out there with my nose? My dodgy sense of humour? Or in fact if I did find anyone would my upbringing have influenced my life so very much that we actually had very little in common - except for perhaps the nose?

The point is I don't know. And I'm coming to the realisation that I can actually find out if I put my mind to it. And it might take months, it might take years, but at least then the pieces will all have been fitted together - even if there are some missing and maybe I never want to do the jigsaw again.

Dream Ending?

We are standing outside a court building. The doorway is carved stone and dominates the building. There is a group of us. It's not clear who I'm with but it's not mum and dad or Ade, men I don't recognise.

Someone approaches through the doors to the court. He looks official, he is wearing a suit, carrying a folder. I recognise him but can't put a name to his face right now. He comes over to us. "The results are back", he says.

"What did they say?" someone asks.

"They are awarding compensation," he states.

There is a collective sigh of relief. The tension, which I had not noticed until now, dissipates.

He continues, "There are conditions. If you got the letter suggesting you might have received blood products contaminated with vCJD then you will be compensated. Otherwise not."

"What?" I am confused. "There were two letters, what if you got the other one - saying there was a risk of you getting vCJD from your treatment?"

"No compensation if you got that letter, only if you got the other one."

I ask, "What if you got the second letter but still go on to develop vCJD?"

"That won't happen," he responded. "According to the medical experts if you had received contaminated blood you would have been ill by now. Therefore you won't get ill in the future, so they have not made plans for long term compensation."

"That doesn't make any sense! Those who had the first letter aren't ill, so they obviously haven't got vCJD either! Why compensate some for the knowledge that they might have received it, but not others who have the same knowledge - when as you say neither group will actually get ill." My voice is raised, I bang my fist against my chest, "What about me!"

I feel dizzy and it seems the scene in front of me is receding at the speed of light. My vision goes black and I feel myself falling onto my knees. My head is down on the floor in front of me and my arms are wrapped around my head. I am wailing. Uncontrollably keening a lament. Mourning a death - I cannot stop. I hurt like I have been pierced with a shaft of light. I am being ripped apart on the pavement.

I force myself awake but the torment lingers on.

It's oh so quiet...

Hello there.

I am still here.
Still at home.
Still feeling exhausted most of the time.
Still bleeding heavily each month and in between.

I don't feel like there is much else to say, other than I'm still feeling rubbish, bleeding a fair bit and you've heard that before. So, not wishing to bore anyone I'll be quiet for a bit.

If you ask, I'll probly say I'm fine - I look well and it's tiring explaining the reality.

I do have lots to say about the inquiry that I've been determinedly attending, but I've not got the energy to write that up yet. I will get round to it. Along with all the other things I intend to get round to when I'm up to it. I'm not slacking, really I'm not. Ade will back me up. I'm just struggling to get on with anything right now. Even putting this on here feels like I'm moan moan moaning, which is the last thing I want, but I know you've been looking for an update.

Bear with me and normal service will be resumed - when my arse moves from neutral into first, when my body and brain bounce back from this, this ... just spent 20 minutes trying to come up with appropriate description and failed ... answers on a postcard please.

x

Hungover

Hurray I hear you cry!! Another photo of Ros with a bloody mush - woohoo!!

I'm hungover.

Not from quaffing too much bolly dahling, not from concocting one too many cocktails, not from swigging seven pints of Swinesheads finest lager but from a lovely, entirely sober, weekend away.

Last weekend I was in darkest Lincs at a Hepaptitis C Forum social shindig. It was something I've not done before - but as I have recently been introduced to the forum and have been hugely benefiting from the support, love and knowledge of the peeps on there - I thought that I'd try and make it up there to put faces to lots of weird and wonderful names.

It was a wonderful and relaxing weekend but still exhausting. I travelled partly by train and the rest with Jason who was driving up from London with another hepper called Wolfie. Not only the travelling but the chatting, eating and drinking of tea has thoroughly worn me out! You may just be able to tell by this photo taken on Monday morning. It's a hangover of the knackered non-alcoholic kind!!

I am feeling only partially recovered and could do with the rest of the week in bed but no, I'm off to London today. The reason for this madness is that the public inquiry into contaminated blood and blood products having its second day tomorrow and I'm determined to be there to support my fellow bleeders who are giving evidence. It should be fascinating.

Wish me luck and I'll let you know how I got on ...

xx

Southern Comfort

I was away last week.

Ade and I drove down to stay with our friends in Fernhurst over the bank holiday. We had a lovely bbq with some very meaty and very yummy burgers and asparagus and potato salad; and did lots of chatting and resting. Their son, who is now 2, is a lovely little chap who spent most of the time we were there laughing and smiling at us. He loved Ade and wanted to play with him and show him stuff.

Kit and I watched The Departed with Jack Nicholson and Leo DiCaprio and Matt Damon - very good film which you will probly be best off watching when you've not had a glass of vino and are falling asleep cos you will need to pay attention. Espeshially when the husbands got back from the pub mid way into the movie and then need talking through the plot so far, and kept asking - who's he? Who's he again? And who's his father?

On the Monday evening after more relaxing and eating pots and pots of never ending potato salad Ade set off to drive back home alone and I stayed on for another night.

On the Tuesday I travelled to Havant to stay with Louise and her mum by the seaside. That was very relaxing indeed and Louise's mum was extremely careful not to talk to me too much as it would, she'd been informed, tire me out. And it would of, but she was very careful. Actually we talked a fair bit anyway but then she'd say - right, I'm not talking to you for an hour, and I'd go and read my book. In her beautiful lounge with the glass wall overlooking their beautiful garden. Very nice.

She did take me on a little trip out to look at lampshades and tried to make me go for a bracing walk along the seafront - sea air would do me good my mum said. I refused to leave the car as it was blowing a force 10 gale and raining and the lady walking her dog was being swept along and the wind surfers were kite surfing. So she opened the window and swept me with the through draft for my own benefit - I felt sooo much better - thanks Mrs M!! ;)


I was injecting twice a day nearly every day I was on my minibreak, so I had my coolbag full of factor to last me the few days away.

Also, because I was bleeding I had a veritable pick and mix of sanitary prods in a suitcase all to itself which I worked my way through. Good job I've got so many toiletry bags for all those damn toiletries!!


I was getting the train home so I was happy to get through my stash and empty out my luggage. It was just a shame not to fill it with a load of freshly purchased shopping but you can't have it all.

The change of scene did me the world of good I think. Thank you very much to my kind hosts for having me stay.

The whole coming home mularky left me pretty exhausted and yesterday was a total write off, dressing gown day (which shocked the hairdresser when he turned up unremembered to do me a cut at 7p.m.).

The bleeding has eased now thankfully, so this week I might get some rest from twelve hourly jabs and a debilitating toilet habit...

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...

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.

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/

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 ...

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.

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 ...