“A marathon and not a sprint”

Those are the words from an email someone sent me about a month ago when I asked her about her experiences of PGD.

The main question I have ever really wanted answered on IVF has been how long? How long for the referral? How long for the PCT funding? How long until we start our cycle?

We did get answers when we asked. But so far, and we’re only in the early stages, the answers do not really seem to tie into reality. I’m not really complaining, but for those who are thinking of going ahead with PGD, I think it’s fair to jot down a kind of timeline of how long things have taken so far. And I will try to keep this up to date.

Mid-Jan: requested appointment with our local genetic counsellor to talk about PGD and to get the referral.
23 April: Appointment with counsellor, and referral passed on. The waiting list is four weeks long.
19 May: Letter received from London with appropriate forms to be filled in. Our London appointment is in the next 8 weeks.
20 May: Forms completed and sent back.

I thought originally that the waiting list being four weeks long would mean that our appointment would be within four weeks, or that at least a letter notifying us of out appointment would be within four weeks. I didn’t realise there was another stage in between.

And time can be a funny thing for those of us with HD. I don’t want to waste any of it. I want to pack my life full of everything, and I want us to start our family as early as possible so that we can give them as much of my time as possible. This is why time is important, and is why I wanted to move forward with PGD as soon as possible after we’d got the test. OK, it’s been a fair while since the test but we had things to sort out first. Many people want a family house, pay off their loans, get married, get a better job … before they actually start a family. And we were the same. But now looking back, I think if we’d known that even the first stage could be three times longer than we expected, we would have applied much earlier.

A marathon and not a sprint.

Waiting for step two

It hasn't arrived yet, our appointment. Some days I forget about it. Some days I think about it. I imagine opening the letter with Mr F, organising my day off work, sorting out our transport down, contacting a friend down there to see if they want to meet up... I make up all these conversations in my head where we're talking to the doctors and listening to the doctors, and telling them how committed we are, and how we know it will be difficult but that we'll find a way through.

And then I get home, open the door, sort through the post, and there's nothing there.

Never mind, it will come soon. And it will but for now, we are waiting.

PGD IVF - step one

So we had our first appointment this morning for the PGD IVF. It was a strange morning really, and threw me quite a bit.

I have been quite excited about our appointment, although still a little bit daunted at the thought of becoming a parent and actually having a child! And I was still excited this morning about it, although strangely a little nervous. And I didn’t really understand why, I guess until I got there.

What surprised me once I was there, was the depth of emotion I felt not because of the imminent discussions of IVF. But because the last time I was at that hospital was when I found out I had HD. And I could see myself and feel the pain of it all over again. I could see myself walking down the corridor barely able to stand, the pain was so bad but Mr F was there holding me up, helping me down that corridor. And the pain was so bad, just searing through every part of me. And I can still remember that pain vividly, as much as I have forgotten all about it over the last year and a half.

Going back to that hospital really shook me up, really made me remember even though I didn’t want to remember. Luckily we weren’t in the same room as where I had my results, I really don’t think I could have coped with that as stupid as it might sound. But I remember that room, I remember them taking my blood in that room, I remember waiting in that room, I remember them telling me in that room, and I remember the pain of that room, the unbelievable pain that I can still feel now. And I remember the pain of walking down that corridor afterwards, with Mr F holding me up. The corridors were the same, and an irrational panic did start to set in. But luckily the room was different and the day was different. We were there to discuss and organise something much more positive, something much happier, something to celebrate. But I never expected that returning to that hospital would be so difficult. It never even entered my head, and I guess the surprise of that shook me as well.

They said it was normal though, that people do react like that if they’ve received bad news somewhere, and that they find it difficult to return. So I’m not too weird afterall!

But the appointment went well. We chatted about all the different stages of the IVF, what will happen next, and so on. I haven’t told any management at work (only very close friends), or my GP so we talked about the practicalities of keeping it that way. Some people do manage it without telling their workplace, but I think I might find it tricky because of having meetings etc to go to. Keeping my GP out of the loop is going to be even more difficult. Apparently when we apply for funding from our local NHS, the paperwork might need to go through him. But our counsellor who we saw today is going to talk to a few people about it and see what the options are.

So we’re being referred.

It should be four weeks until our big trip to London, where we’ll meet the team there, chat through everything with them and they’ll run some blood tests etc on us to check everything’s ok.

It’s not that far away really, but it’s not until we’ve been to London for our first appointment that we (with help from London) can then apply to our local NHS for funding and the counsellor was unsure how long that stage would take as it just totally depended on the individuals involved. She thought we stood a good chance though of getting funding – apparently they look at things like your age, whether either of you have any previous children, and your BMI. So we should tick all the boxes but I guess we’ll see what they say. But the ball is rolling, so watch this space. I promise to keep you updated with every stage and every scream, just as with the test.

Looking back now, I’m glad we went to the hospital. They said maybe they should have arranged for the appointment to be at our house, but I’m glad we went there. It’s not a bad thing to remember why we are doing this, and what we are trying to protect our kids from. And it’s not a bad thing to face a demon every once in a while, even when we don’t realise it’s there.

Angela: 1. Demon: 0

I win : )

Back in the firing line?

I haven't been writing much recently simply because there hasn't been much to say. Without mum, life continues and is good, and HD isn't a major factor in my life. I exercise more regularly, I take supplements now, I keep an eye out for latest studies and findings... but these are part of everyday life for me now rather than being an effort to maintain. And to be honest, I rarely think about HD at all. I'm just living.

The approach of IVF will probably change that to some degree (even if only slightly) but our first appointment is not for over another two months so there's plenty of time to figure that out in the future.

Unfortunately though, things are not always as simple as we would like them. I messed up. I made a mistake, I got distracted and mum got my phone number. I came home late from work, and there were messages on the phone again. Not masses, not abusive, but there and enough to make my heart sink to the floor.

Balls.

I felt awful and a horrible horrible sense of dread. Mum had my number and I just could not bear to go back there again. I could not bear the stress, the upset, the abuse, the endless messages or the strain.

I shamelessly blocked her number.

Then a letter came. One sentence of hope you're ok. Five pages of her latest woes and accusations against me and other people. One page of an almost apology.

She has tried and I do appreciate it. I really do. She is trying to mend things in her own way. I just don't know if they can be mended. That might sound a bit pathetic and selfish on my part. But whilst she's trying to make things up with me, she's turning on those who are actually still left speaking to her. Saying the same things to them as she was saying to me. Treating them in the same way as she was treating me.

She has apologised because she wants to speak to me again. (Maybe she misses being horrible to me and the others they're just not the same - joke!) But she still does not understand that you cannot treat people in that way. CANNOT. Nobody deserves that or should have to put up with it. And until she understands that (and I doubt that she ever will) and stops treating people in such a disgraceful way... For me to accept her apology and unblock my phone... It would only be a matter of time before it was my turn again. A week maybe, a month if I'm lucky. And I would be waiting everyday with trepidation and anxiety as to when that would happen, dreading every phone call that came through. My heart on the floor. And I just simply cannot do that to myself or to Mr F.

And for that mum, I am truly truly sorry.

A catch-up

It's been ages hasn't it? Christmas and hecticness at work (again!) have completely taken over and left me no time to think let alone type.

So I thought I would set aside some time tonight and do a catch-up.

Let's see...

Last time, the anniversary of my test was approaching. It was not a horrendous day but I guess it was not as easy as I wanted it to be. I couldn't help but think about it and I couldn't help but remember the horrible bits. I am never going to forget that date. Next year, Mr F and I are going to make sure we do something nice instead.

Mum... Well we're not speaking. I have not called her in a long time. I have written her a few letters, met her at a few family things but I'm keeping things low key and trying to minimise contact with her. The guilt still has not gone and never will but I am happier. I'm not jumping when the phone rings, I am not planning excuses, I am not listening to her tirades... Life is better and it's kind hard to deny that. So I'm going to carry on with things as they are. I guess this also explains the absence of blog entries - I have not needed to sound off and I have not needed to analyse things endlessly. I have just been living my life.

And I guess the other thing to report is that it is the beginning of the IVF. We are waiting for our first appointment. It should take a couple of months to come through, and this appointment will be a kind of information-finding / counselling session. So I am writing down all of my questions so I don't forget : ) I'll probably just forget my list instead. Ha ha!

I promise to keep you all informed of everything as it happens, just in case anyone has as many questions about it as me.
x

A year on

Tomorrow will be the first anniversary, I guess, of my results. In your head you think the year has flown by but actually I feel like I have known for a very long time. And the memories of that day and the pain have faded.

Obviously I can still remember it, I can still see myself sitting there and hearing the news and walking down that corridor with Mr F's arms holding me up. And it does hurt to remember it.

But it's fading. And that is a good thing, because I'm moving on. Yes the news was devastating, yes in many ways it has changed my life, my attitude, my dreams, my diet... but it isn't my life. Maybe it will be in years to come if they fail to find a cure, but maybe it won't be.

It's there in my head, I'm not saying it's not. And it has definitely influenced things - small things and big huge things. It's always there, it will never go away. It never could. But it's not a great big massive thought/fear/blackhole dominating everything.

A year is a long time, and I am still glad I had the test. It was the right decision for us at that time in our lives. Life is as I wanted it to be a year ago if I was unlucky enough to have the gene.

If it was not my mother...

If it was not my mother, it was an old friend...
If it was not my mother, it was a cousin or an aunty...
If it was not my mother, it was someone else's...
If it was me...

All these situations put a completely different spin on things. As a friend or a more distant relative, it is so much easier to walk away. If it was happening to someone else, it would be so easy to advise to stay away. If it was me, and I pray that it never is, I hope that those close to me would leave me behind and enjoy their lives. I have made Mr F promise me this many times over and will continue to do so until I actually believe him.

It's easier to imagine now that I could walk away, when I haven't spoken to her for several weeks, that I could stop speaking to her. That I could do it and not be riddled by guilt. That I could do it and she'd be OK. That I could do it and people wouldn't judge me.

But what about family gatherings? What happens then? We've got a big family gathering in a couple of weeks, and Mr F and I are getting married next summer (hence the delay on the IVF). What about Christmas and Mothers' Day? Is me walking away putting undue pressure on others to spend more time with mum than if I was still talking to her?

My head is spinning. I just don't understand how it works, cutting someone out of your life.

And I have kind of made my bed in a way - I asked for an apology a while ago for what she said and did. I did actually think she would apologise - I expected a long letter about how hard her life is, and how horrible people are, and that it's not her fault but that somewhere in there would be the word I'm looking for: "sorry".

One has not been forthcoming. Which has both surprised me and hurt me (which has again surprised me).

Obviously it would have been a rubbish apology even if I did get one (seeing as I asked for it) but at least it would have been something, some kind of recognition of someone else. And maybe it would help other people in our family too, by emphasising that this kind of behaviour is unacceptable and she is accountable for it. Afterall, if she knew what she was saying and doing, if she planned to break the rules as she did (which she admitted to), then she has to apology for her actions and try harder next time to stop herself whether she is ill or not. These are the rules by which all of us live by.

And I can't really turn round and talk to her again without an apology, because that would be saying that it's OK to hurt me and us, her children. We don't mind, we'll always bounce back and forgive you.

And more and more, there is no one left. She's angry with that many people that they're just not around anymore. Her social worker has changed (after she made some ridiculous complaints), she's pushing away her HDA rep...