Post "Meetings and appointments"

As requested by Diane : ) ... I shall update...

There's not masses to update in a way. Just bumbling along really. Trying our best to accept and to move on and to make things better.

I have been going regularly to acupuncture which is helping immensely. I have no idea whether it's helping our fertility chances, but it is definitely helping my head and helping me to feel back in control of myself again. Even if it only ever does that, I am forever grateful.

I am back taking both my supplements for HD (which I stopped whilst there was a chance I might be pregnant) and supplements for intended pregnancy (folic acid, royal jelly - some websites say it can help with egg quality). It sounds daft but that was a really big step for me - both accepting that I was not pregnant and accepting that I might be again in the future. It took a while to pick up the bottles again.

I have stopped taking the pill altogether now. We were careful at first but we are not being so any longer. If I get pregnant, if I can get pregnant, we will go down the PND route. If we don't get pregnant, well then we are already on the list again anyway for IVF.

Adoption is still being considered but is on the back burner at the moment. As is egg donation.

Hmmm.. all of sudden, there are things to say! I am not very good at being quiet obviously!

Mum is mum.

I could expand on that. But for now, I don't want to. It is tricky dealing with two such humungous issues at once and I need to learn again to push mum to the back of my mind. She is less important than us.

It was the test "anniversary" over the weekend. It has been three years now since I knew. I was going to update the blog but I didn't know how much longer I wanted to continue to mark the day. I felt stressed in the build up to the anniversary but then actually forgot about it when it happened, and then it was over. And that was nice.

Am I still happy I took the test? This year, I do not 100% know the answer to that question. I think I am but I do not know, not like I did. To be pleased to have had the test, to be glad we did it, somehow seems to then suggest that I should be pleased with where we are now. I could and sometimes do wish with all my heart that I did not have the gene but nothing can take the gene away, and I should not waste my wishes or my energy. Mum would still have mental health issues whether she had HD or not, I could still well have fertility issues whether I have the gene for HD or not.

Life no longer feels that simple.

Meetings and appointments

We have had two meetings this week. One with our local genetic counsellor and one with London. Both have been really useful but really hard, as they bring all the pain of the past few months flooding back, and it is just so hard to stop the tears.

We met with the genetic counsellor because we wanted other options, in the main to discuss PND (where you get pregnant naturally and they test at 11 weeks) but also to bring up adoption. She didn't know much about adoption other than we probably could. But the PND discussions were really useful. We hadn't given it much thought before, I couldn't bare the thought of having our child aborted if the wrong result came through. That part is still the sticking point for me, the abortion would be hell after all we have gone through especially at 11 weeks. I've seen the 12 week scans, I know what they look like at that point. And there might be a couple of days between having the results and being booked in for an abortion.

But getting pregnant would be fun, we wouldn't have to travel to London, there would be no financial cost attached and chances of success are much higher (50/50 rather than one in five), providing we can get pregnant obviously...

And therein could lie our problem.

Our conversation with our consultant today was not great. Not only have we got HD to contend with, but potentially fertility issues as well. My eggs did not respond well to the fertilisation process or the biopsy, and our last little egg was not in good shape when it was implanted. This could mean I have rubbish eggs. Mr F is all good, his sperm were brilliant. But my eggs could essentially be weak and lazy.

All the tests beforehand, the scans, the bloods, they were all normal. There was nothing to indicate a problem. The doctors were surprised by how many we lost. So it could be a one-off but it could also be a serious problem for us if we want our own child. Especially as there is nothing they can do to boost the quality of my eggs.

Urgh!

Outside of the normal medical world, I have been having reflexology but I stopped last week. It was nice and relaxing, and great to talk things through with someone (again!) but I don't know if it was actually doing anything. And the stress returned the second I got out. I thought maybe I could go back once the next cycle actually starts but I don't know... But I am now trying acupuncture. Recommended by a friend. I had my first session yesterday and I was starting to feel a bit brighter. Obviously today has squashed that a bit. But he suggested he could help channel my energy better, get me feeling a bit more stable, less tired and/or emotional and boost the quality of my eggs. He said that emotions, energies etc were all really important in health, in fertility and in egg quality. He said everything I wanted to hear, so I will be back there for a bit at least. Will keep you posted on how things go.

IVF-wise we're going to give things another go. I am still not sure how many cycles we are going to do. I don't know how many I can cope with, and maybe we are just not meant to have our own children, I don't know. They are going to start the ball rolling for applying for funding and see where we go from there.

And so the cycle starts again...

Options?

I brought up adoption last night with Mr F. He didn't seem too impressed. This whole experience has been so difficult, I just don't know how many times I can go through it and still be me. Can I be like Mr and Mrs XXX who have been through it six or seven times, are now in their forties and from their final attempt, they have a beautiful baby?

Can I go through it that many times? And still remain sane? And not turn bitter and twisted?

We could consider PND (where you get pregnant naturally, and the fetus is tested at ten/eleven weeks I think). But could we go through with the abortion if the test came back positive? After almost two years of trying for a baby could we get that close and then let it go? Although the odds are obviously better than PGD - 50/50 compared with one in five (if I can get pregnant naturally). It's not like it will be a series of cells at that point, it will be on it's way to becoming a baby. And how many times can we go through that and come out the other side emotionally stable?

And having the gene for huntington's brings with it other complications. I don't want to be piling this much stress on myself on a long-term basis. I don't want the next five, six, seven years to be about having a baby, and potentially never getting there. I want to enjoy life, not be caught up in this cycle of madness. What if the extra stress is not helping my own health?

I wish there was some kind of crystal ball that could show you the consequences for each different choice: "If you choose option A (PGD), you will succeed on your second/fifth attempt..." But there's nothing, just a series of options, each as tricky as the next, each as uncertain as the next.

Signed, sealed, delivered

She's in.

We got her in, more specifically. It wasn't the easiest of days but it could easily have been a whole lot worse. The most important thing is that she should be safer now and better able to manage - no stairs, it's much smaller, it's wardened...

And the beat goes on...

You didn't think did you that just because I haven't written about mum in absolutely ages and ages that it was all suddenly OK? That things had miraculously somehow become easier whilst we went through the IVF. That instinctively she knew, and laid off?

Oh no, she’s been up to her usual tricks all the way along. She had an attempted suicide a few months back, tried to get more dogs, went ballistic with her care workers probably umpteen times, upset my sister, had a bit of an argument with me when I told her to lay off…

All of that was fine. All of that, to be honest, went into a little box in my head to be dealt with later, if at all. Don’t think about it now, there’s enough to be thinking about, I told myself. Shut her off, she is not worth it. Concentrate on the egg. And my family protected me as well, as much as they could.

Today we, all of us, all of our family are at breaking point. She is due to move into more appropriate accommodation on Saturday, a bungalow from the council. Despite the late notice we received, we have all of us suspended our plans to move her in. A couple of days to go, she’s pulling out. I could tell you the reasons, but believe me, they are ridiculous and it’s really not worth the effort.

Compromise is no longer a word in her vocabulary.

I don’t know what comes next.

If she stays in that house, it is only a matter of time before she falls down the stairs and seriously hurts herself. If we physically force her to move… I dread to imagine the consequences of what that would be. Another attempt? If the social worker declares her unfit to make her own decisions… that’s not going to go well. She easily could end up being housed in a care home, with only a room. Or even sectioned if she reacts violently (which is a strong possibility). The offered bungalow would seem like a fairy tale.

I am looking for a sentence to end this post but there isn't one. I have no conclusion. No knowledge of how to end the post, the situation or of how to help her.

Catch it

Good days and bad. That's what I have although it's probably more like good hours and bad hours. Anything can knock you back down - a thought, a sentence, a memory, a hug of support. And it takes time to get yourself back up again.

But I am doing better. Bit by bit. This journey has been horrific and there have been times when I could not pull myself back, let along actually want to pull myself back. And there have been times when it felt like there was nothing left inside me, just a pit of nothing and numbness. No love, no motivation, no hope, just nothing. The emotional journey of IVF has been worse than anything I have ever been through before - worse than my mother, worse than having the gene for HD, worse than giving yourself the injections, worse than everything bad that has ever happened. I don't know how people keep on going through endless attempts, I think it could easily destroy a person, absorbing everything else and giving nothing in return.

But it has now been at least 48 hours since the last tear rolled down my cheek. And that small step is definite progress. And I caught an autumn leaf this morning, and my heart leapt and knew instinctively what wish it wanted to make no matter what my head said. I held onto that leaf all the way home, crushing it with my hope, my heart bursting with the importance of my hope.

What comes after a failed IVF cycle? Despair, self-destruction, depression, anxiety, desolation, isolation, anguish, heartache, tears, alot of tears, so much pain, pain that absorbs your soul and pours out from every part of you, that you just can't stop or control. Confusion. Why didn't it work? Why couldn't we have been lucky? No answers. Just pain. But I think I now do see a glimmer of light. It is there and somehow I will emerge on the other side of this, somehow I will let Mr F help me to do that.

The pain? God, I am so scared of the pain. Please let it stop. But there is hope. There is. Catch it in the light, catch it when you catch a leaf, catch it back.

Standing still

Somedays I am fine. Some days I am not. Sometimes I am OK most of the day, and then something sets me off. Something reminds me of what we have lost, and then I collapse back down to the brink.

I feel like I am moving foward and then I get pulled back. I am not moving anywhere, I am standing still.

The funny thing is I can't remember how long ago it was. I keep thinking it was last week, but I don't think it was anymore. I think am forever stuck in last week.

But all around me life continues. People get married, move on with their jobs, move house, become pregnant. And I am stuck, still struggling with our loss. Pulled back to devastation by one thought, or one ill-thought through sentence from someone else's mouth.

A friend called last night. She asked how the IVF was going - I hadn't spoken to her in a few months. I told her we had lost our egg. She made all the right noises, the sympathy etc and then she contentedly, smugly if I am more honest, told me she was pregnant. Bombshell! Last time I spoke to her, she didn't even have a boyfriend!

So I made all the right noises, wished her congratulations, sympathised with her morning sickness, agreed with her when she laughingly said that neither of us had ever possibly imagined that she'd be able to give me advice on babies and pregnancy, sympathised again over what size she might be for an upcoming wedding. I think I just about held it together, told her I was OK, hung up the phone, and burst (literally) into tears.

Dear God, we have been trying to move towards having a child for three years, been in the process of actively moving towards IVF for well over a year and a half, have been to hell and back in the last few months and have come out the other side with nothing. No child, no egg, no nothing. I am well and truly devastated, and in the same phone call she tells me that she did it? That she didn't even want a child and look at that, she's pregnant? In the same phone call? Am I completely invisible?

I don't really know what to think. She's supposed to be a good friend. I accept that other people get pregnant, sometimes without planning, sometimes barely knowing the guy, sometimes without even wanting to be pregnant in the first place. It's just one one of those things that pregnancy and children will never be like that for me. But for f***'s sake, did she have to tell me in the same phone call?