The DR train

So, I’m back on the down regulation train. Good thing DR isn’t hideous and I hate it right? Right.

It all started in wonderfully traumatising style on Tuesday. I got up and did my injection – no problems with that – then in the afternoon I went into the clinic (I decided on Lister BTW) for a blood test for genetic karyotyping (I don’t know either), counselling and then an endo scratch. Waited 45 mins for the blood test (much longer than I ever waited with the NHS?!), then went into the counselling session.

DH and I had a session at Guy’s after our first failed cycle which we didn’t really find very helpful. The woman was annoying and just kept saying “and how does that make you feel?”…I know how it makes me feel lady – shit! Tell me how to not feel shit!

This time I went on my own and it was better. She obviously can’t make it all ok, and all the practical suggestions she had I already do, but I think it helped. We talked a bit about other options…about ‘looking over the edge’ of this never working which was weirdly helpful in a way….upsetting, but helpful. I have wonderful support in my mum and sister but whenever I mention my fears about it not working I’m hit with denial from them. As my mum always says “we’re not there yet”, and we’re not but I’m a project manager by trade. It’s my job to plan and I can’t stop my brain thinking of every eventuality. I’ve had 3 failed implantations. I’ve never been pregnant. My sister had 6 miscarriages. There is a very real possibility this is never going to happen for me. It breaks my heart to think of it but I have to.

We make ‘perfect embryos’ and because my womb looks ‘perfect’ but clearly isn’t – the only real options will be surrogacy or adoption (that’s a whole other post). I’ve had NK tests done at this new clinic and they’re putting me on steroids among other things but…well, I’m not full of hope. (As a side note: all those doing IVF check that your clinic does all the tests you’d need if using a surrogate. A friend had IVF a few years ago, had a baby and got some frosties. Now due to health issues she needs a surrogate to have another child and the HFEA are saying because she wasn’t tested for chlamydia and gonorrhoea she can’t use her frosties…better to have an iron clad plan B even if you don’t think you’ll need it.)

Anyway, I digress. After the counselling I was feeling rather emotional obviously and then had to wait for 45 mins for my endo scratch. Whilst waiting an ex-patient came in with her baby…she didn’t have an appointment, just came in to see the nurses. I understand you are grateful but…..THIS IS NOT OK….EVER…..EVER!! About 5 nurses gathered around the baby and cooed over it for 20mins, including the nurse who finally called me for my endo scratch. Couldn’t help but think that at least half the delay was due to cooing…did not help my mental state. Trying desperately not to cry whilst a fairly elderly, but kindly gentleman has his hands in your hooha is not what I’d choose as a fun activity on a Tuesday afternoon but the actual ‘scratch’ was quick and not too painful…less painful than the cooing.

The rest of my week was also fairly hideous as I was crazy busy at work, rushing home, cooking dinner for the three 15 year old dance students I had staying with me and then carrying on working until 11pm. And then repeat. Ugh.

At least I spent Saturday at an amazing Hindu wedding, in a saree which was brilliant if rather difficult to keep the saree in place! It was so much fun and so colourful but a long day and by Sunday I felt like I’d been run over by a bus. Ahh DR exhaustion, it’s been a while.

Thankful

This week I’m feeling pretty thankful – I’m also feeling fucking annoyed at the unrelenting, endless mother’s day adverts – but mostly thankful.

Before Christmas, after our second failed transfer my Dad had made some noises about giving us some money to help towards a fresh IVF round if our final FET didn’t work. It didn’t. And I’ve been really nervous and worried about the money as every time I’ve spoken to my father since Christmas he’s been saying how money is tight and he’s just had a big tax bill etc etc.

If he wasn’t going to give us some money we still would have gone ahead with the cycle…DH’s parents have given us some money to help out. But it would make life pretty tight, especially as we’re getting married this year. The debt was pilling up in my mind and I was starting to worry that if we ever do get pregnant I’d only be able to have 5 mins maternity leave as we’d have so many bills to pay. Because that’s how my brain works – worrying about things that aren’t and may never happen.

So…this week I ‘made the call’ and asked him for some cash and he agreed!!! Wahooooo! This takes a huge weight off our shoulders and less money on our IVF debt so am very very thankful.

Also this week one of my amazing cyber friends offered to send me some Gonal-F she had left over from a previous cycle. I am just completely overwhelmed with gratitude. She has restored my faith in humans. I can’t be thankful for IF, but I am thankful for the amazing people I have met as a result of it. Thank you so much lady.

Also this week my brother made me cry. Twice. My brother kind of leads a charmed life. His motto is ‘It’ll be alright’ and it always seems to be for him. He is also not terribly connected to his or others’ emotions. These two character traits have meant that he doesn’t really get my IF struggle (having 3 kids with no probs, the most recent in January with his new wife-to-be, 39, no issues), and I don’t really talk about them with him. His view that ‘It’ll be alright’ also extends to my IVF attempts and so I don’t think it’s really occurred to him that I live in gut wrenching fear that it will not ‘be alright’.

But recently the penny seems to have dropped. He asked my sister if I was doing ok as when I’d seen him in February I looked down. Apparently his words were “I think its ruining her”. This in itself just made me sob. The fact that he has noticed things are bad, means things are really bad. My sister went on to educate him a bit about just how hard it is, to which his response was ‘shit, I hadn’t really thought of it like that’!

So then I spoke to him on Monday as now my cycle is booked in it looks like not only will I not be able to go to his wedding in Italy (was always unlikely anyway) but also egg collection will probably be the weekend of his fiancée’s hen do and his 40th birthday. I’m a terrible sister.

So he was trying to convince me that that if by some miracle it does work that I should come to his wedding and it would be fine to fly at a few weeks pregnant. I’m not convinced by this to which his reply was: “ you know none of this is your fault don’t you. Nothing you’ve done or haven’t done has caused this, and if you got pregnant and something bad happened, nothing you could do or not do would have prevented that.” I mumbled a ‘yep’ and got off the phone quickly and burst into tears. Because of course I know none of this is my fault but….. it just got me in the gut to hear my brother say that to me. I don’t know why. I’m not close with my dad (despite the loan) and my bro is quite a bit older than me so maybe it’s a father figure thing but ouschhh. It got me. And I’m thankful for him, and him trying to understand.

 

PS some of you have said my posts aren’t showing up in their reader anymore…I’ve asked WordPress about this and they don’t know either. Ugh. Sorry. Although if this problem is effecting you, you probably won’t read this anyway!

1 girl, 2 clinics

On Tuesday we had our WTF at Guy’s in the morning and then our first consultation at The Lister hospital in the afternoon….I do not suggest doing 2 clinics in one day! By the evening my head was spinning.

As predicted, Guy’s didn’t have much to offer us. On our last FET I had a hysteroscopy and took steroids. Last year I was tested for lupus anti-coagulants, anti-cardiolipin antibodies and phospholipid antibodies  (all coming up negative) But this seems to be the limit of their arsenal. Its a shame as I really like my consultant. Dr G is great – she’s kind, no nonsense and very honest with us. I asked what would be different being a private patient rather than an NHS patient and she told us “Nothing. You will get exactly the same treatment and some people find this very frustrating as they are now paying.” You can pay an extra grand to get a more personalised service from a consultant, but Dr G doesn’t do this and if staying with Guy’s I’d want to stay with her.

So, then we went onto the Lister. After waiting half an hour (not a great start!) we got in to see Dr Greeky (DH is half Greek and we use the adjective ‘Greeky’ quite a lot!) He seems really nice, although does have a touch of the private Doctor smooze about him.

I do struggle with private medicine. I’ve worked for healthcare organisations for 10 years, not hospitals, but in health policy/guidelines centres – places like the Department of Health etc. In all of the projects I’ve worked on there have been practising NHS clinicians and frankly private doctors are thought of as money sucking devils!! So it’s a bit of a challenge to not get hung up on the ‘they’re just interested in my money’ impulse I have. Although, I did ask Dr G what she thought of the Lister and she said they are a reputable clinic that she would recommend, and not a place that will rip you off with nonsense so that made me feel a lot better. Also, I emailed Dr Greeky today (yes, I have his actual email address rather than a phone number that no one answers for Guy’s) and he responded within the hour, so maybe I can get used to this private medicine thing!

So, Dr Greeky’s suggestions were:

  • Recheck my thyroid as was slightly high last time
  • Do karyotype genetic tests
  • Do NK CD-69 test
  • Do NK cells cytotoxicity assay
  • Treat any NK problems if necessary
  • Endo scratch
  • Take Clexane
  • Use IMSI instead of ICSI
  • Stick with a long protocol – if it ain’t broke, don’t fix it

So…..We’ve decided to go with The Lister. It is quite a bit more expensive than Guy’s (and other clinics) but I think if we don’t try the extra stuff, despite there not being much evidence behind it, I’ll regret it. But this I also struggle with. I currently work in a centre that produces evidence based guidelines for the NHS. I often sit in meetings and discuss how desperate people are often taken advantage of by those looking to make a quick buck with tests and treatments that have little or no evidence to back them up. And now I’m one of those desperate people we all shake our heads sadly about in those meeting. But hey ho, what can you do?!!

We’ve decided to get going this month. Today is CD2 So in 20 odd days I’ll start down regging. Ugh I hate down regging.

I’m trying to feel excited and hopeful but to be honest at the moment I just feel flat. I can’t imagine this working and frankly dread the added pain of not just having a failed cycle, but having fucking expensive failed cycle. At the moment I’m just praying to have a good reaction to the drugs and to get some eggs, embryos and if I’m really lucky some frosties.

But really I just want a baby. This goal seems to be getting further away, not closer. Why does this have to be so hard?

I am a bitch

Tragically, the girl I talked bitched about in this post had a miscarriage this week. Apart from feeling very sad for her, I also feel like a grade A bitch for calling her a drama queen. I am pleased that I cleared the air with her after the spa and have been texting her this week and sent her flowers. But still.

This journey teaches you so much about yourself. I seem to have got to the point where I’m convinced that bad things only happen to me and not to the people I know (for the most part). I just naturally assume that everything will be hunky dory for them.

Which I guess makes me not just a bitch, but a self-absorbed bitch to boot.

Underestimated

Work has been ridiculously busy for the last few weeks so not only have I not been able to update you on how it all went with educating my friends, I’ve also not managed to keep up to date with all your news so sorry…I have a few days off now so will attempt to rectify.

So, after finding out my friends were not quite as enlightened on how I’m feeling lately as I (or they) thought I decided I should email them all to help them to understand. Thank you everyone for your feedback on sources to help me with this, but most of all thank you to The Unexpected Trip. I borrowed very heavily from your blog posts and I really think they helped.

Below is what I wrote to my friends:

Hi girls,

Now the fog of grief is starting to clear I thought I should send you an email to just explain a bit about how I’m feeling and why I’m behaving crazy right now. I know you all know (and are very supportive), but I also know it can be a bit confusing sometimes and difficult to understand some aspects. I’ve been trying to write this for a few days and started off with a ridiculously long message that no one has time to read (be warned: this ain’t going to be short either!) but then I came across this from an infertility leaflet that kind of hit the nail on the head:

You may describe me this way: obsessed, moody, helpless, depressed, envious, too serious, obnoxious, aggressive, antagonistic, and cynical. These aren’t very admirable traits; no wonder your understanding of my infertility is difficult. I prefer to describe me this way: confused, rushed and impatient, afraid, isolated and alone, guilty and ashamed, angry, sad and hopeless, and unsettled.

The support I have from Twitter is brilliant. It immediately puts me in contact with over 600 people all feeling the same as me. The downside to this is that I have become used to not having to explain myself. I’ve got used to people understanding exactly what I mean in 140 characters. They understand that when I have a crazy feeling or a flash of anger/resentment it’s not how I feel all the time but just in that moment, and that it will fade as quickly as it came  – and usually leaves me feeling very ashamed.

As a result I have been less likely to talk to you guys openly about how I feel as it takes so long and frankly is a bummer. We don’t see enough of each other as it is and the last thing you want is to sit with sobbing me all night….and I don’t want to be sobbing all night. I spend enough time like that, I want to be able to enjoy myself when I see you guys. I already feel like I go on about it all too much– it seems like the only thing I have to talk about these days and its boring.

You’ve all been brilliant at supporting me and being there for me but I think you were surprised by my rawness at the spa. This is why DH and I don’t usually see people for at least a month after our cycle!! I know I seem so resentful and bitter and mean. But please, please do not think these emotions are directed at you. They are not, even if it may feel that way sometimes – even if I actually direct them at you!! I am raging. But I’m raging at the world. I would not wish any part of this on anyone, least of all my lovely friends. I want you all to have wonderful happy families or add to the ones you already have. I don’t want this to happen to you….I just don’t want it to happen to me!! And I’m f***ing furious and sad and just totally broken hearted that it has. 33 ‘natural’ negative tests, plus 3 IVF negatives takes its toll. And this time has been even worse as now I have to start the whole process again, and pay thousands of pounds for the privilege.

A couple of you have asked if it is normal for me to feel this way. To be this consumed by my emotions surrounding this journey. The answer is 100 percent yes. You won’t believe it but I’m often congratulated on twitter/blogs on how positive and brave I am for continuing to engage with the world: for being able to hold my new niece; for still socialising with friends and family. This s**t is tough and many don’t manage that.

The other thing I wanted to help you understand is the sense of loss we both feel after each cycle. Someone said to me after our second cycle “well, at least you haven’t had a miscarriage”…and no I haven’t had a miscarriage and am well aware that the awful physical side of that is so terrible, as is obviously the mental. But even so, I have had life inside of me. Life that we have worked f**king hard to make with drugs and tests and scans– 52 doctors appointments to be precise, in most of which I have to take my knickers off. As well as the acupuncture and diet changes and no drinking and yoga and qigong and visualisation and a million other crazy things I’m not even going to admit to.

And finally it resulted in me + DH = our embryo and it was inside of me. It may just be a clump of cells, but it’s our clump of cells and it may be the closest we ever get to a baby. And then it died. And then I had to go through the whole awful process of drugs and scans and tests again. And again. And still no baby. Still an empty womb and empty arms. Again and again I have to file away my ultra sound pictures of my embies, and find a way to get up in the morning and carry on. I can’t find the words to explain this to you, but one of my brilliant blogger friends has:

“the woman has dreamed of becoming a mother. She has imagined pregnancy, giving birth, and raising her child. She has seen herself on one path—the path of family, where she ends up in a house full of noise and life—but she has been forced down another, quieter, darker path, again and again and again. In both cases (miscarriage or IVF failure), the imagined child, the child who lives in her heart, is ripped out of her heart. That imagined child is so real! And no less real if it never had a heartbeat. And no less real if never had any cells at all. In both cases, the woman is not allowed to progress through the stages of her life in the way that she yearns to. She is arrested in one phase of human development—and must contemplate the reality that she might have to stay there permanently. Positive test or negative, menstrual period or miscarriage—both lead to the same state of childlessness that can feel torturous.” For the full blog post see: How far along were you? It doesn’t matter and neither does a BFP

So no, I haven’t had a miscarriage but at 4am when I’m trying to stifle my sobs so as not to wake DH (he has to comfort me enough during the day) believe me, I have lost my babies – 4 in 9 months – and it is killing me. The desolation that I might never be a mother is all consuming: the guilt that I might deny DH the chance of being a father is crushing.

DH also feels every last emotion that I do – I think sometimes people assume its not as hard for him but it is. Everything I have written above he could have written.

My last request of you is to read this blog post (not mine!). It is truly beautiful and describes perfectly how I feel and hope it will help you to understand the difficulty I can have being around babies/pregnancy/families these days: Its not envy its absence

Love you guys xxx

—————————————————————————————–

I had an overwhelmingly lovely response from my girls, but this one I think was the sweetest:

Darling, I’m really glad you sent this to us all. It’s a perfect way to open our eyes (and our hearts) to some of what you’re feeling.

I know sometimes I / anyone will struggle with what and how to say stuff; the stuff I want you to feel and stuff I desperately wish you didn’t have to feel. Reading this helps put me in your space momentarily, and lets me see with your eyes.

Well done sending this babe, I think it’s brave – and that’s you J

Amazing you are, and don’t you forget it XxXx

Didn’t Mandela say ‘Education is the most powerful weapon which you can use to change the world’. I think you’ve just made a massive step by educating us better and maybe that can start to change your own world, even if just a little. That really is amazing xx

Love you always

Big hearts and kisses XxXxXxXxXxX

————————————————————————–

I think there is so much underestimating in this journey – at first we ourselves underestimate how hard it will be, and others underestimate how hard it is all the way through. But I guess they can’t know if we don’t tell them.

PS sorry this post is so bloody long!

 

Educating Rita…and Suzie and Lisa and Christina and Angela and…..

So after my last post and various conversations with my friends this week I have come to realise how little people understand infertility. I mean… I knew they didn’t understand it but didn’t realise how little about any of the emotions involved they understand.

In the end I did text the preggo and cleared the air, explaining that my heart is broken but I definitely don’t wish bad things to happen to her. It turns out that my friends do not know this already. I’m not sure how, but they didn’t.

So instead of getting mad about it (who am I kidding, I’ve been so mad about it) I decided I need to educate them. Because my friends are lovely people. They really are. They are caring and thoughtful and kind and they love me alot and wish this wasn’t happening to me. But they don’t get it. They don’t get why I’m so angry and bitter and resentful (at the world! Not at them. Another thing they don’t get). It baffles them completely that pregnancy announcements don’t fill me with joy. It confuses them that preggos/baby showers/cute families are like a knife in my heart. That I can’t just get over it and live my life happily until I get pregnant, which (in their eyes) will definitely happen. And they certainly don’t understand that each failed cycle is so much more than a procedure that hasn’t worked, of the loss that I feel.

I have read so many brilliant blogs/articles about infertility, the emotions that go along with it and helping fertiles to understand it. Do you think I can find any now?! Can I buggary. I mean, I have found a few but none are quite right. I need the right balance of letting them know just how painful and difficult it is, and just how normal my anger/bitterness is without it seeming like I’m having a go at them.

So I need your help! Any suggestions greatly welcome. Recently I read a blog about a girl that was in a supermarket and had to look away from a mother and her toddler having fun whilst shopping. It was a great post about the hurt and bitterness that is not wanted but unavoidable. But now I can’t for the life of me find it….Help!!

Spa, sobbing and schoolgirl shit

So after many bouts of sobbing last week I packed myself off to the spa with 7 of my girls for a weekend of well deserved pampering. In the past the anticipation of this weekend would just have been full on excitement. But now, as with all social gatherings, I was a bit nervous, especially since it came only 5 days after my most recent failed cycle: ‘how much will they all talk about their kids’, or more importantly ‘who will be pregnant’ etc etc..IMG_20140223_145610

But despite my nerves and general failed-cycle-devastation I was excited. Of the 7 girls going, 5 of them I have known since I was a teenager and am very close to. The other 2 are girlfriends of the boys I have known since I was a teenager – one I’m pretty close with, the other not so much but still get on well with her. It was this one I was nervous of. Let’s call her ‘H’. She has been married for 9 months so every time I see her I’m constantly on preggo watch.

We had a lovely afternoon of relaxing round the pool and nipping out to get in the outside Jacuzzi and were feeling nice and relaxed for the evening. We sat down for dinner and got some champers in to celebrate being together which is when H’s hand went over her glass as she was ‘on anti-biotics’. That old chestnut.

I tried to hold it in. I tried to keep it together. I made it through the starter but then my eyes started filling up. Because….IT SHOULD BE ME. Even though I wasn’t very hopeful during my cycle I still had a little day dream that I could be sitting at that dinner table and could tell the girls that it finally worked. I finally got my dream. I can finally stop being miserable. Every. Fucking. Day.

But instead someone who I know has been trying for less than 6 months got her dream. Just another reminder of what I don’t have. Another person that can do what I can’t.

I got up and dashed off to the toilet before I started sobbing at the table, closely followed by my bestie and I sobbed my fucking heart out on her shoulder in the loos. Then I dried my tears, sorted myself out and went back to the table. I was normal. I chatted away, with H as well, I joined in, I laughed. I didn’t sit quietly or be moody. I got on with it after letting it all out.

The next morning at breakfast H said she was going to go home as she’d had stomach cramps overnight and then burst into tears. Some of the girls that are closer to her went off for a chat with her. In the end she stayed for a while but left earlier than the rest of us. I really felt for her – having cramps when she was clearly still very early in her pregnancy (which had not actually been directly spoken about but was obvious) is a scary thing.

I enjoyed the rest of the afternoon with the girls relaxing at the spa. Then I arrived home. DH said that H’s husband had called to say that she was really upset by me and had had to leave the spa early because I had upset her so much. They could not understand why I would have such a reaction to their happy news (that wasn’t actually given) and were shocked with the way I behaved.

Now, I could understand if she’d said to me ‘I’m pregnant’ and I’d cried in her face, but I didn’t. I went off, had a cry came back. I know it was obvious I was upset by it but….for fucks sake. I’ve lost all 4 of my embies in 9 months….in the time it will take her to have a baby I’ve lost 4 of mine. Also…did this mean that she just made up the cramps because if so…what the fuck? That is not cool.

 It just really brought home how little people understand about what we’re going through and how totally alone we are in this journey (apart from you lovely people of course).

I started this post yesterday and I was still SO ANGRY at her and at her husband for calling DH and making a fucking drama out of it all. She is a rather immature person and trained to be an actress so she is well….dramatic but I was just so mad that they could be so heartless and unsympathetic to our pain.

But this morning I’ve woken up a lot calmer. This weekend was the first time I’ve cried in front of any of my friends. Normally I save my tears for DH/my mum/my sister and when I speak to my friends I’m quite matter of fact. I obviously say I’m upset and its hard but….there isn’t really any way anyone can know just how difficult this path is. They don’t understand the process, they definitely don’t think of my failed cycles as losses. They just think ‘oh well, it hasn’t worked yet but it will’. They don’t understand the heart ache. And to H who leads a pretty charmed life she must be baffled at why I’m not happy that this wonderful happy thing has happened to her. She must think I’m a heartless bitch.

So now I don’t know what to do. I don’t want to exactly apologise for being upset. I can’t be sorry for being upset about this.  But I don’t know if its best to email/text her to clear the air. And if I do this should I keep it short or explain to her exactly why I was so upset. To make her understand just how broken my heart is. I don’t want it to turn into a big thing and part of me wants to just forget this stupid school girl shit but I know she’s the type of person that holds grudges and I can’t be doing with awkwardness between us. And another part of me wants to educate her so that she understands that not everyone gets the fairy tale and just how fucking hard it is for us.

What do you think I should do? I don’t want to be a bitter old bitch, but I also don’t want people to be left with the idea that I’m overreacting. I know I have more important things to worry about but I just can’t stop obsessing about it.