Some good news for once!

Just a short post, with some good news!

I sent my specialist the dates of where my cycle is now, and he’s said that when I get my period (in a couple of weeks) I can start on letrozole again, so we can start trying that cycle! Wahoo!!

Even though i’m scared to try again, that little bit of hope in my heart gets bigger as time goes along. The reality is that we’ve had five miscarriages, two with reproductive immunology treatment, and the hydroxychloroquine is a very new, not-proven treatment. I know that the odds aren’t in our favour, but for some reason I can’t shake the hope that my body might just do what it’s supposed to, even though I know that it probably won’t. Only time will tell I guess.

Also, does anyone have any recommendations for TTC bloggers to follow please? Any RPL ones would be great too. Most of my favourite bloggers are now preggers (congrats ladies!) so i’m looking for some others to follow so we can walk this road together.

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A little scare, hopefully all ok!

I wrote a post on Sunday when I was feeling absolutely bloody dreadful. I’d had almost a week on the hydroxychloroquine and it had pretty much drop-kicked my immune system flat out. I had a head cold, sore chest and just generally had zero energy. Meh.

I plodded along this week and was getting a little better each day, until one day I thought that my close-up vision wasn’t as good as it should have been. This scared me, as hydroxychloroquine can affect your vision, so you have to be very careful. Queue panic stations on my part!! I contacted the specialist and he said that it’s very unlikely to have been the drugs after such a short time, but to monitor it and let him know if it gets worse. I think it was probably me being hyper aware of everything, but definitely best to be on the safe side.

I’ve said before that I’m not particularly hopeful about this new drug. I honestly can’t see it working, but I know that we have to give it a good try anyway. But when it looked like I might have to stop taking it, and we would have to stop trying, with no other treatments available, my heart completely fell. The thought of not being able to try again, that this might be it, really made me sad. I’m completely prepared that if this new drug doesn’t work, and I lose another baby, that we move on to surrogacy. That’s absolutely the right thing to do and I’m so grateful that we have that option, but I didn’t realise that there was a little more hope in my heart than I realised. Despite all the losses and upset, my little heart still thinks that there might be a chance that this new drug will work, even if my mind is telling it otherwise. It just made me realise that I’m not 100% ready to stop trying yet, even with such a small glimmer of hope. 

My chest has only got worse this week, so I went to the docs and was given antibiotics, as she says I have a chest infection, probably not helped by the hydroxychloroquine lowering my immunity. My little old lady pill dispenser can’t actually fit all my drugs in anymore now – ha!! I might have to resort to carrying one of these round with me to fit them all in…….

  
But generally I’m feeling better in myself and I’m sure my chest will be on the mend in a few days too.

For the first time ever, im actually hoping for a long cycle this month, so we can start trying again next cycle when my 6 weeks on hydroxychloroquine is up. Please cross your fingers that my super polycystic ovaries work in my favour for once!! 

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Blast from the past

I’ve just been trawling through my computer to clear off some files, as it is almost full, when I spotted an Excel sheet called ‘Hospital Chart’. This didn’t ring any bells to me, so I opened it up to see what it was. Here’s what I saw:

It took a few minutes to register, but this a chart which my husband must have put together to monitor my HCG levels and % increase for my third pregnancy. I hadn’t seen this before, and it’s just absolutely melted and crushed my heart both at the same time. My husband is a numbers man through and through and he was obviously tracking the levels to see if there really was any hope.

Sadly there wasn’t, but how I love him for trying and hoping.

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Wedding season

When you get to my age (34 now, one year of half-decent eggs left before everything goes south apparently), each summer means plenty of weddings. I love a good wedding, and love seeing my friends so happy and enjoying this lovely chapter of their lives. My husband and I have been to two weddings this summer and both have been brilliant. It’s great to get together with people you haven’t seen for a while, laugh, dance and enjoy a lovely day in the sun. 

The only sad side to this is that weddings are always a reminder of our own wedding day, almost three years ago, before all of the baby stuff took over. We had such a fantastic day, and I look back at photos from the day and can honestly say that I’ve never seen myself or my husband look so happy. My heart aches when I see brides on their wedding day, so beautiful, so full of happiness and so excited for the future. Like I was. I wish that I could feel that joy again – that pure joy which I felt before my heart was broken, over and over again. Before losses, before drugs, before tests, before a sadness that I didn’t ever imagine I could feel. 

I’ve had almost a week on the hydroxychloroquine and it’s been a bloody horrible week all round. I’ve felt sick most of every day, along with a head cold, a sore chest and just total exhaustion. It’s been similar to how I felt when I had the humira injection, as they’re both used as Immuno-suppressants, so I guess that makes sense. I’m hoping that it gets better, as this is totally exhausting. 

My husband said to me the other day that this drug is the final stretch now – a few more months, then if no joy we can start with surrogacy. I’m trying to see it like that, but it’s so bloody difficult when all of the drugs that I’m putting into me make me feel like this, it’s not nice and it frightens me a bit what I’m doing to myself. But not for much longer I suppose.

I think once we can start trying again I’ll feel better, as at least we’ll have a chance then, but it’s another 5 weeks of this drug before then. I’ll keep plodding along till then and hope that I feel better soon.

X

Hydroxychloroquine – day 1

We’re back from holiday and I’m happy to report that we had a fantastic time!!! Being away with friends and their two young sons (our godsons) was exactly what we needed. It was a total distraction from everything and we didn’t have time to sit around and mope/worry about our situation, we were too busy playing in the pool with the kids or laughing and drinking with our friends, it really was brilliant!

We got back on Sunday and I felt poorly even before we left. This developed into a full-on head cold with a bad cough and chest, so I was off work yesterday recovering. Not what you want when you get home from a cracking week away, but I think the daily drinking (nothing too heavy, but why not have a glass of wine at 11am?!) coupled with the running around and excitement just left me a but burned out. But I don’t care, it was totally worth it!

Now that my holiday is done, its time to move on to the next (and final) round of treatment – hydroxychloroquine. I need to take one 200mg tablet every day for 6 weeks, then we can start trying for a baby again. From then on, I take the tablet every day, in addition to all my vitamins, metformin, steroids, letrozole and ovitrelle. I sound like a drug dealer with all these bloody pills!!!

I’m now on day 4 of my cycle, so if my body plays ball and gives me another long cycle this month (around 35 days would be amazing), then we’ll be able to start trying again next cycle. I have to be honest and say that i’m not holding out any hope for this new drug to work. I know I should be more positive, but after 5 miscarriages and pretty much every bloody drug going, i’m starting to accept that maybe this route won’t be the one for me after all, and I’m feeling pretty ok about that. I’m doing/have done everything that I can to try and make this work, and this drug is the last one which we can try. The specialist mentioned that there is a condition (I don’t know what its called, or if it even has a name) where a woman’s body somehow remembers having a miscarriage, and then every time she falls pregnant it gets ‘better’ at miscarrying, so you lose the baby faster each time. Brilliant. This definitely sounds like what is happening to me, which is why I’m not holding out much hope, but sod it, nothing ventured, nothing gained, so ill give it a try.

The specialist said that he is one of the only doctors in the world who is using hydroxychloroquine for fertility/miscarriage treatment, so I may well be one of the only bloggers in the world who is writing about this – can I get an ‘oooooh’!! Because of this, i’ll make sure that I share my experience with it, good and bad, in case it helps anyone else. The list of possible side effects was horrendous, as they always are with the drugs which I’m taking, so I’m really hoping that I’m not too badly affected. Im also nervous of how low my immune system will be once I have to start taking the steroids again, but for now I’m taking it one day at a time and will see how I go until then. I had to have my eyes checked before starting the tablets, as it can cause damage to the macular part of your eye, but all looked ok for now. I’ll have to repeat that in 6 months, as well as an ECG on my heart (brilliant) in 3-6 months time too. I hate to be all melodramatic, but what the frig is all of this doing to me…..!? Bloody hell!!

So another month off, then hopefully we can try again next cycle. I spoke to my surrogate and she is happy for us to try this treatment until Christmas/New Year, then if no joy by then, we’ll look to start things moving with her. I’m really hopeful about this, so will just hope that my body doesn’t pack in before then!!!

On another note – how’s this for irony…..Our lovely cat has started to dive in bed with us at about 4am each morning, which is killing the pair of us as we are getting no sleep, so my husband has had to go and buy a BABY GATE to stop her getting up the stairs to us. A BLOODY BABY GATE!!!! Talk about the universe just giving you the middle finger!! But it worked last night and she stayed away, so thats one blessing at least.

Keep your fingers crossed that i’m ok on the drugs and that next cycle we can try again. We’ve got a nice few weeks of weddings until then, so some lovely distractions. Only a few more months to go on all these drugs – thats my new mantra right now!!!

X

Counselling session #2 – wowzers!

I decided a couple of weeks ago that I would go and see a counsellor. After our fifth loss, we had to deal with not only another miscarriage, but also the reality that this might never work – that we might never have our own baby. Obviously this is bloody difficult to deal with, and I found myself not only hurt and sad that we lost another baby, but also very angry at the world for the unfairness of it all. I made the decision that I didn’t want to become angry and bitter at the world, because apart from the baby situation we have a really lovely life, so I wanted to be able to see the good stuff again and I thought that seeing a counsellor would help me to make sense of my feelings and move forward in a positive way.

I made an appointment to see a local counsellor and saw her for the first time last week. She’s a very warm, friendly lady from New Zealand and she has a lovely manner. She asked me why I was seeing her, and I told her our journey and that I wanted to feel positive again after all of this, and she was genuinely shocked at how much has happened to us – not just that we’ve had 5 miscarriages, but that my mother in law died so suddenly, that I was made redundant, that we moved to a new area – so much has happened in the three years since we’ve been married, it’s just been one big roller coaster of massive, crappy events. I was a bit taken aback by this for some reason – I obviously knew everything that had happened to us, but saying it out loud to a stranger it was clear that it really has been a bloody tough few years.

As we were speaking, I was my usual composed, matter-of-fact self, but I could feel that there were tears just behind my eyes, ready to go. I didn’t try and hold them back, but they just didn’t feel ready to go for some reason. It was only the first session, so it was more about me explaining everything, then I agreed to see her for a minimum of four sessions, as she says that this is a good amount of time to make some progress.

I saw her again yesterday and she asked me how I was feeling. I made the comment that I could feel that there were tears just behind my eyes again, but that they weren’t ready to come yet. She’d made the comment at some time before that I was quite detached from everything that had happened – that this was my coping mechanism and my way of carrying on. She didn’t say that this was right or wrong, just that it was what I needed to do to cope with everything.

She then said that she’d put together a little exercise for me and showed me a family tree that she’d pulled together from what i’d told her about mine and my husband’s family. Obviously in real life this had our names on, but I’ve replaced these with random ones for now – with my husband as Jack and me as Jill. She talked through it with me and made sure that she had all of the names correct, number of brothers and sisters etc, and that was all fine. This is roughly what it looked like…..

After i’d looked at it for a minute, she moved her hand, and I realised that she’d been covering up something at the bottom of the chart. This is what I saw…

Oh. My. Word.

I saw those five little lines and absolutely broke down. It doesn’t have as much impact reading it on here, but seeing our names and our five little babies that could’ve been just absolutely shattered me. It just made it so real, seeing them there as part of our family. Our children that could have been, but didn’t make it. I had real feelings of loss, of sadness and of guilt – that I hadn’t been able to hold on to our babies and that now they were gone.

Once i’d composed myself a bit, the counsellor said that she’d done that to make me realise that they were real, they were babies, they were lives, even though they didn’t make it. She understood how i’d detached myself from them – talking about them as miscarriages, medical procedures, bumps in the road – but that in order to heal, I needed to acknowledge that they were real children – our children – and that they mattered. I’m quite a visual person, so seeing them right there, in black and white, as part of our family, was unbelievably powerful.

We talked some more after this and I really felt better afterwards. Just by having this realisation, shedding some tears and talking it through it somehow really made me feel better. This is the great thing about counselling – just by saying something out loud and realising it, you feel strangely better. Nothing changes, your situation is still the same, but you just feel differently once you’ve acknowledged it. It’s incredible.

I’m seeing the counsellor again in a couple of weeks, as she is away on holiday for the next fortnight, and I’m really looking forward to what else we might discuss. It’s quite a challenging and emotional process, but its really opening my eyes to new feelings and thoughts. I know that ultimately it won’t do much in terms of my fertility, but anything that helps my mind and soul to cope and heal is a good thing in my book!

We’re off on holiday on Sunday – wahooooo!! We’re at a wedding on Saturday first, so it will be a lovely weekend of catching up with friends and then off to enjoy the sunshine! I’m starting my hydroxychloroquine the day we get back – fingers crossed it goes well and no side effects! But until then – pass me the proseccooooooooo!!!!

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