re-opening old wounds

Today the BBC reported that Doctors are now confident that they can successfully transplant a uterus that would carry a pregnancy to term.

On face value this is excellent amazing news, news that should fill people like me with hope but when you read the detail it is not expected to be used in clinical practice for many years. This will no doubt be when I and many others like me am too old.

Susan Seenan of the UK's Infertility Network said, " There is life beyond having children, and while the disappointment may never leave you, with the right support people can find other paths to fulfilment."

This sort of statement is shocking but heavily implies that this particular woman never wanted children or never had any difficulty conceiving.

Being diagnosed with MRKH is incredibly difficult for an individual, you feel isolated, angry, loose a sense of self worth and may struggle to find direction. For quite a while I couldn't talk about it, I felt miss understood and ashamed.

I was diagnosed aged 17. Even after all this time, having come to terms with my infetility and family limitations seeing this has opened the old wound. Reading this womans comments and insensitivity is heart breaking and I remain frustrated that I am unable to find the words to express myself articulately now.

Years never take away that sense of humiliation from the doctors exams or all of the scans. The feeling of having no control over your life and the basic decisions most women have. The fear and anxiety over becoming intimate with another person knowing that you are different leaves you so scared of rejection on those grounds.

Today I feel as though I have had the wind knocked out of me. I never expected to feel much about the news, not this much anyway. I guess it is time to put the feelings back in the box and remember that life is what you make of it and I have a lot ot be thankful for.

16/10/07

We can’t go back, on our steps retrace, I find it hard to keep pace with the world around me. I lost my rhythm and my faith, maybe misplaced amongst the broken dreams and shattered hearts all the damaged tomorrows that fell apart at my touch. I tried too little then too much to make things work but I had no luck, and she was no lady at any rate, a cheap whore who sold herself short. Till my pockets were empty and she was all talk.

I am no sales person. I believe in truth, another folly of my vanishing youth, that I chased after and now mourn for. So many years gone but so many more to go or so I’m told a healthy life and I’ll grow old just to fade away like a dying star, light years away; so close but yet so far. The distance between us just a trick of the light, that changes monthly with the moon and every passing night that falls away, like the autumn leaves throughout the days I waste. To think of you, your smile so chaste, inviting me for one last taste and then goodbye; your lips the truth in such a beautiful lie. A masterpiece to the naked eye so well constructed only to be destroyed by the insecurity locked up inside.

Who Knows

So it's been a few days since I updated this but I guess I have been trying to order my thoughts. Dreams have been vivid again and life has been strange.

Every day for the last week I have had a splitting headache by 2-3pm, the only thing I can do to stop the pain behind my eyes is to close them so I guess it's lucky I work from home otherwise I might get some odd looks from my colleagues. My one to one was a bit of a misnoma (if you can have a bit of one rather than being one or not). I was offered a new patch which sounded great and they offered to send me to a senior managers meeting this friday. The patch was duff and would have made my situation far worse, although a word on the quiet with a colleague of mine has lead me to believe that it wasn't meant as a trick offer but more that the management don't know our jobs well enough. As for the managers event I have my suit ready and will be up at stupid O'clock to get to London on time.

Dreams- I had this dream a few nights ago that I can only vaguely remember now but it was a funeral for someone on Tom's side of the family, a burial rather than cremation as I remember the cemetary and it was raining then really sunny. There was a little girl with really dark long brown hair and she was with me the whole time.

Two dreams last night, both of which were slightly less subtle in meaning and symbolism. Both were set on our holiday to the dominican republic. In one, I went with my parents there, they were going after just one week and mum was really ill and grumpy (no change there). I was supposed to be spending the second week with my boyfriend but this girl turned up who thought I was dating her and for some reason even though I didn't know her I let her stay and my parents left even more angrily than they would have. My parents were saying and implying that the only reason I was with this girl was to annoy them and because I was medically imperfect and couldn't do anything even have a child. I was really hurt but then everything kind of fades.

In the second Tom and I were on our honeymoon, it was lovely at the resort but we decided we wanted to transfer to the other resort which was supposed to be the same standard over in mexico for the second week. When we got there though there were kids at the adults only resort and nothing was as nice as the DR one. I remember Tom was queuing for breakfast and I decided not to go with him and went out onto the beach. There was a woman there with a sign who said she could read dreams and people so I sat down and she told me things that I can't remember now about me but I the emotion I carried from that was sad.

This was all probably prompted by an email I sent to the hospital yesterday chasing them for a response to my complaint as the 25 working days has now elapsed.

I was in a litigious mood yesterday and ended up sending a formal complaint about a manager in glasgow. This guys team are all underperforming and as my team passed a bunch of accounts to them at the end of quarter 1 he has been trying to find deals which we should have given to his team to claim. He highlighted about 500K worth that he felt should be given to his team and taken off of mine. I managed to prove the 150K of mine needed to stay mine but not everyone else was as lucky. During my debate they implied that whilst the dates on the contracts were definitely for when I would have been responsible for the accounts that I might have asked the customer to backdate them to make that happen. This is fraudulent and a disciplinary offence. I openly told them to be careful about what they accused me of as slander wouldn't be tolerated but they didn't apologise and still requested additional proof for me to keep work I had done myself. So once I had proved it I decided to give them the same bad day as they had given us by raising the complaint which will require a formal apology and retraining on core behaviours and reduce their scores in the annual review. The moral of the story is that unless you have evidence don't make accusations.

Ok so I probably sound really mean but whilst I might not have actually been offended by the comment I was angry at their audacity in the whole thing and the way in which we were treated. Whilst I couldn't do anything about that directly I could certainly make it so they would avoid contacting our team in future and this was the quickest way.

Well more puppy classes tonight. It's raining again which isn't a surprise anymore and I am ill again. I haven't had a meal since sunday but on the upside I guess I am loosing weight.

Lucky

We have a new addition to the house here now. I bought a little puppy, a black labrador called Lucky. He has the softest brown eyes and a tail that seems to be powered by the renewable energy of a happy voice. Just say something and it wags a little faster, tell him he is cute and he rolls for his tummy to be tickled. Another replacement for the fact that I can't get pregnant, that's what he thinks so he wouldn't refuse to let me bring Lucky home. He is probably right, I need something to love that will love me unconditionally in return and no one is more faithful than a dog to it's owner.

Lucky was 7 weeks when we picked him up, that makes him 9 weeks now. He isn't exactly peeing in the right place but he is trying. he is so eager to please that within the first few days I managed to teach him to sit and shake paws. You can jus whisper the command and he bottom drops to the floor, tail sweeping the ground quickly, his paw lifts without the second word mostly, he knows he is so clever!

I have spent the last week trying to teach him to lay down on command but this is more tricky it seems. He gets so excited that he starts to lay then pops right back up again. I have scratched and nibbled hands, a sign of unadulterated excitement.

Picture this, a little lack puppy skating around on my laminate floor as he races after a fluffy white cat with cat fur hanging from his mouth; the cat pulling his angriest face as he raises his paw at the puppy. It looks like trouble until you get closer and hear the cat is actually purring!!

05/10/2007

I have found myself counting the days again. I am supposed to be better and yet my outlook calendar at work has two date marked this month. One is the day I should get a response from the hospital to my last letter regarding my ongoing complaint that they gave me harmful and unnecessary medication. The other is a letter from my solicitor regarding the independant surgical review from the first of the two hospitals, the one that left me to die.
Tom cringes when I tell him that this is the first thought on my mind in the morning and the last at night most nights. He apparently can choose what he dreams about. Is life really that simple? Am I choosing to hurt myself and relive the hardest moments nightly? Why would I?
I find myself working through the legal and medical arguments, that link each hour of my hospital stays I find myself crying over the pointless futility of a fight against a hospital with its own legal team and just me. David and Goliath. Only I have no slingshot and this is for real.

My dreams are of snow. Walking bear foot in the crunching fresh snow trying to keep up with my family who walk far faster than me, wrapped warm in their winter coats. Only it isn't winter in my dream and I am supposed to be somewhere but I can't remember where and I know I am letting everyone down.

Not a scary dream, just sad. Better than dreams of sharks and midnight chases; hospitals; rogue surgeons and relentless storms on the beach but they keep me awake and puzzled. I search for meanings rather than sleep, my morning eyes are evidence of this but he doesn't seem to notice. far safer than talking about feelings and treading the same story arc again and again.

Fightstar

"We apologise for nothing" They might not but I find myself apologising for everything even when it's not actually my fault. Not anymore sugar! From this day forward I bite my tongue (and probably say ouch instead).

Anyway's. I just wanted to clear the air as I probably didn't make any sense before, if ever. I seem to have lost my mum, misplaced her, put her down and can no longer find her, the thing is have seen her but I can't remember when the last time was. I mean I saw someone who looked like her a few weeks back on 14th of September for a few days but while the resemblence and address were uncanny she just wasn't the same. It's like opening two books with the same cover and author only to find out that they have a different story inside. And I guess that's the crux of it. The woman who is now biologically my mum isn't my mum anymore not inside.

It hurts a lot but she has gone and I don't think she will ever come back. I thought that at my age I would be too old to need my mum but this year I have needed her more than ever. Three separate admissions to hospital in six months, a wedding being planned and a growing sense of doom (damn I'm being melodramatic there) and I find myself wanting to call her just to talk and here a little normal life going on.

Back on Christmas day I couldn't have dreamed that things would be like this. Back then I was sat on a hospital bed, my loving parents had driven for hours to come and see their only daughter and if nothing else that Xmas had gone right, I had the christmas gift of a family that loved me. Only a week later and I am admitted again, same symptoms this time a diagnosis and emergency surgery. The major difference-my folks don't drive down. Maybe they figured I was going to die so it was a waste of time. Maybe they just couldn't be bothered. Who knows. I felt alone, but hospitals are a lonely place. I am alive and well (mostly) my folks told me how worried they were and how relieved they now are yet when I told them I had set the date for my wedding they refused to come. I guess this is when I realised that my eyes just hadn't been open for a long time when it camr to my parents.

Well, I don't want to carry on rambling, although I am ridiculously good at it. to cut this lifelong story short my folks have refused time and time again to discuss my wedding and will not come. Tom's parents hav offered to speak to them about it but as my parents have only met them once in the last 6 or so years we have been together I can't see it being a good move. So having tried for a few months to solve this over the phone we went to visit them on 14th september. I asked my dad outright about it and he said I should speak to my mum again. I bit the bullet when everything seemed ok but I clearly misjudged it. The subject was taboo for the whole stay not even a word could be said. I was more than upset and Tom ws a little confused. I think, to be honest, that he had only half believed me when i said that she refused to discuss anything related to the wedding.

She rang me on the 25th for some pointless cold conversation and then suddenly launched into vitriolic attack on me. In short, I am a terrible persona dn a worse daughter, I did terrible things throughout my life and she wants nothing further to do with me.

Now seems the time to explain that My mum has been eccentric for years, boardering and corssing into odd and these days down right weird. I'm not being narrow minded or harsh. I genuinely believe that she requries medical help. She only leaves the house to walk the dogs. She wont go into shops or answer the phone unless she knows who is ringing. She has re written our childhoods on a whole range of points, some pretty nasty blaming us of some terrible things and others really inane and harmless but still irritating.

A good example is that my mum turned 50 this year she isn't old. She went to work in the garden digging so put on work boots. Later she went into the house too them off and used the bathroom. My dad came home from work to find her in the garden digging again, with one sandal and one slipper on. Not quite sure what happened to her boots but she hadn't even noticed.

The telephone converstion lasted about 25 minutes most of which she spent yelling and accusing me of things I know just arent true because I remember them well, infact if you asked a friend or two of mine who were there in many cases they would remember them too but she wont accept that she is ill.

So. I lost my mum. On my wedding day there will be no parents of the bride but there will be whispers of what the bride has done to make her parents not want to come. Ok so that might be paranoid but people love to gossip.

27/09/2007

If I could just remember to forget or maybe forget to remember I might be a better person. But does ignoring a memory and moment in time make you better or just ignorant and naive?

I know that reversing one irreversible conversation would change the next years of my life and dry the tears I tried so hard to choke on but what is done can't be undone, and I am not a good enough person to forgive or smart enough to forget.

Mum, I love you, despite what you say and totally believe to be true. I accept who you are but cannot know you anymore. So here is the goodbye I never said and here's to the memories you'll never get to share. My wedding and your first grandchildren, birthdays and christmas yet unwritten. I will not think of you and in that act you are right that I am selfish. I cannot think of you my throat is tightening, my eyes are filling and I cannot breath, yet the world has a water shortage and I am welling up.

I miss the old you, the real one that's buried and hidden inside. I miss my mother and friend in which I would confide, I hold onto the good moments but the bad ones wont let go. For all the good times and memories you have erased I have nothing to prove myself to you.

Get help. Get better. Be the woman I used to be so proud of again.

I love you, from the bottom of my heart and the back of my mind where you will always stay.

Goodbye

Back Waters

For such a small country we have an astonishingly different attitude and way of doing things in different parts of the country. Back home if I had booked the wedding they would be asking for payment asap but here I have tried to settle balances but they wont accept my money. I don't quite understand how someone can run a business like that but they obviously do!

work has been tough, I have been covering my colleague for 7 weeks now, I am making him money but failing to make any for myself and it is getting demoralising when I know that its the base I work not my abilities that hold me back.

The car insurance people have failed for yet another week. Again we are told to expect the cheque in the post and again we wait struggling to pay things like council tax in the meantime.

Going to Mum and Dad's next weekend, we have friday saturday and sunday off and I haven't seen them since the begining of January just after my hospital trip.

Redecorated the bathroom, just need to refit the taps, and change a couple of things like the toilet seat then that's one more room complete. All that's left is the three bedrooms and hanging some doors then we are done and ready to have a couple of holidays whilst applying to adopt.

So where in the world would I like to go? Tom and I discuss this almost daily but he seems non committal on anywhere that's not 5*. I know he wants to make sure I stay well but we only live once and I am willing to risk things if it means I can see some of the world.

-The Amazon
-Egypt, the tombs and the nile
-Australia
-New Zealand
-Safari in Africa
-Sri lanka for elephant orphanages
-Borneo and the orang-utan sanctuaries
-Victoria Falls, Zambia
-America
-Canada

1st-2nd September

It's been a while since I last sat down and updated this so here goes.
Tom and I spent last weekend together but it started with an omen (if you believe in those things and I don't) and went kind of down hill from there.

The postman delievered more of those white envelopes Saturday Morning, one was the GMC saying they had asked the JPH to advise if my consultant had an other complaints against her. Big deal. The other was a response to my complaint about her direct to the hospital. It's important to note that she did not apologise or admit any error even though she had wrongly diagnosed me and treated me with harmful medication. In fact, she went as far as to say that it was my body being different that was the problem which laughingly proved my point rather than hers, as she had known I had a slightly different anatomy she should have looked harder as she had already pointed out that, "it is known that with these types of congenital abnormalities that organs can be in different locations" this being such she obviously couldn't be bothered to do her own job properly.

In regards to my concern that she had given me harmful medication she said that plenty of women take the contraceptive pill and do not get ill, which according to her is a higher doseage.

Again she proved my point. I was prescribed 50mg oestrogen daily for the rest of my life, women on the pill take either a progesterone only pill or a combination of oestrogen and progesterone. In the mostly commonly used combined pill in the UK there is 30mg of oestrogen and 150mg of progesterone. The side effects I described are symptoms of oestrogen domincance which is when the body has too much oestrogen and not enough progesterone to counter it. The female body needs 4 times as much progesterone as oestrogen but she failed to consider this.

My response to the letters was to try and write a letter straight back but Tom didn't look happy about it and clearly wanted to enjoy his weekend off. In the end I gave up and tried my stepford rach routine. Works nicely for him but I spent the night with one bad dream after the other waking between each for just long enough to feel miserable and disorientated.

By sunday afternoon we had argued to the point where he grabbed me by the throat and squeezed for walking away from him. I don't know what he thought it would achieve but I just took his keys left the house and locked him inside. I will not be hurt like that. We made up in the end, stupid argument but I was really upset about the letters still and never being allowed to deal with them when he is there. Being with someone is supposed to be about supporting eachother through the bad as well as the good times, and I know we have been through a lot of dark days recently but I still need a hand to hold in mine when it all gets too much.

Sometimes I just go for it

I'm sorry for using song titles on my blog.

Finally we have broken the laws national identity and had good weather on a bank holiday weekend. Congratulations. I hope the sentence is worth it.

Wednesday morning I was ready on time to leave for the office. I was stupidly nervous about the interview but unwilling to admit that it mattered (surprise surprise). My last fortune cookie reared its carbohydrate head and came back to bite me on the butt again.

"Everything in life is luck."

I hope it isn't all down to luck or there are going to be a lot of undeserving winners. So in that last comment I probably just proved that luck is a element in our lives. Crime does pay these day afterall. I also heard yo get a good pension scheme with it.

Traffic was heavy and I had to rush to catch my train. As my shoes clattered up the platform the muffled announcement said that the train for London Liverpool Street would now be terminating at Ipswich where passengers will need to disembark for a bus transfer to Colchester before resuming their journey. I paused to catch my breath and check the overhead monitor for the next train but that had been cancelled. From there on I knew the day was going to be a wash out.

As the train slowed to a halt at Ipswich the intercom advised that we should all remain seated until told otherwise, twenty minutes passed, along with furtive glances amongst the passengers but still nothing happened. Then in quick succession three different announcements were made. the first was that this train was going to Liverpool Street afterall (to which there was an audible sigh of relief). The second asked us to leave the train as it would be returning to Norwich and the third said we were going to Liverpool Street again!? By this time I was confused and didn't have a clue whether I should be sitting there or waiting on the platform. The crowd of passengers heading to norwich boarding the train was a pointer in the right direction. I lurched from my seat before they had a chance to lock the train doors and made my way out to the car park to join the unsighlty queue for the bus transfer.

All in all, an extra hour and a half was added on to my journey, had they let us join the queue for the bus when we arrived this would have been substantially less but it's too late now.

I finally arrived in the office just after 11:00am looking rather flusterd and somewhat agitated. My interview was bought forward an hour so I knew that a lunch break was out of the question and I hadn't had a chance to write notes for my speech or go through my competancies as we are encouraged to do. Not sure about Vince but I know dave took notes in with him to the interview. They both said that it was tough and that Kath and Kathy (what a combination) had changed their personality and approach a few times throughout.

As I got up to go down for my meeting Dave (looking concerned) said, "are you not taking notes with you?" I shrugged nonchalantly and said I would be fine. He didn't seem convinced. The interview was just over an hour long. I don't mind admitting that I struggles to come up with examples for things every now and then but that I was reasonably happy with my presentation. I noted that they didn't change their style like the guys had said and seemed friendly throughout. I suspect that they had me in there to make up numbers and weren't really considering me for the role which would explain their differing behaviour. I also didn't get asked some of the questions that the guys got asked such as about how the company is doing financially at the moment. Lucky really because I wouldn't have had a clue.

What else? Erm, well the insurance people who said they would send us a cheque still hadn't and were making excuses as to why not. Tom lost his rag with them but not sure he actually got anywhere. Tom worked all weekend but he is off tomorrow until Friday then has Saturday and Sunday off which will be great.

It was the Carling festival this weekend so the majority of my friends were off camping. I am looking forward to their tales and impressions when they get back. I checked out a few of the live sets on the bbc Reading and Leeds official website. the streaming is really good quality so it was pretty cool.

Off to Essex tomorrow until Thursday. will tell you what the Ritz is like.

21/08/2007

Most people will admit that seeing a brown envelope on the door matt makes them cringe or sigh, another bill or reminder. I have a morbid curiosity with the small white envelopes that appear every now and then. These days I spend a lot of time waiting for them to appear, but when I reach the matt I find myself holding back, almost unwilling to touch it. In truth I want, no, need to know what is inside but I am terrified of the answers I will get and a few deeps breaths isn’t enough to steel me against any news.

No news is good news. I always wondered how people could say that, a definite answer means you can accept it and move on. But today I am at my desk struggling to focus on work because today I realise that no news really would have been good news. When you are waiting for an answer you have hope that it will be whatever you are looking for, but when you have it, hope is gone. I make no sense and I know that but it’s so hard to describe that feeling in the pit of my stomach when I slide down onto the sofa envelope in hand. The breathless anticipation, or anxiety at the very least, as I tear it open and pull the latest letter out.

"Dear Ms Mallen….. We have considered the concerns you raised about Dr Jane Preston and have concluded that your complaint would be best handled by the doctor’s employer….We will only carry out enquiries of our own, if the results of local investigation call into question a doctor’s fitness to practise."

For the above please read: "Dr J Preston did not actually kill you or give you any lasting physical injuries that we are aware of, she may well have provided harmful and unnecessary medication and given an incorrect diagnosis which resulted in you needing counselling, however, we feel that she is still fit to practise as a doctor on other patients in the NHS."

I think the world ground to a halt when I read that. I was getting over the fact that my lawyer wouldn’t sue Dr Preston because she was on a no win no fee basis but that the General Medical Council are supposed to protect patients from unfit doctor’s and I was prescribed a carcinogenic drug that wasn’t required and would have been given daily for the rest of my life.
I spoke to a different lawyer hoping someone would be willing to take my case but he said as there was no physical injury they couldn’t. Ironic as he pretty much said I should have waited until I got cancer. Apparently what I have been through just hasn’t been enough, the extra symptoms, nightmares, counselling that I should probably arrange more of but don’t want to as I don’t want to ruin my chances of a new role in the company. I am in catch 22. The incident is on my mind every day while she wont ever give what she did another thought. The legal justice system in the UK is blind.

Your probably sick of hearing me say this but, I cried. I tried to talk to my mum who said I either needed to find someone to take my case or let it go, but whilst I’m sure she made sense and meant well I can’t figure out where to go next and emotionally I can’t forgive or forget what happened to me. I hurt too much inside too often and thanks to the handy work of two hospitals I no longer trust the judgement of people who have trained for years in their field of expertise and might well be proficient in their role.

Kind of makes you realise how frustrated dogs must get when they chase their own tails. Round and round they go, so sure that this time they will catch it. So close but so far, the goal is always in sight but forever out of reach. (unless they have a bloody long tail).

So today I am angry, frustrated and hurt all over again. I should be working on my notes for tomorrow’s presentation but instead I am typing this to try and calm myself and give myself perspective. There are 6 billion people on this planet going about their daily lives, I don’t even know a fraction of them but I do know that we are all alone until we let down our guard and accept that people might fall short of our expectations but equally they might be more than we ever hoped.