Almost here……

So nearly four years on and my book is finally here.  Not launched yet, but we are now just a few days away.  Just a few tweaks to the distribution and then we’re off!

Today I went to the publishers to collect some copies ready for The Fertility Show and as Zac was off school poorly today, I had to take him along with me for the drive.  Somehow, it was meant to be that he should have a high temperature and be off school today.  Afterall, if he hadn’t been such a wonderful, beautiful boy, that meant the world to us, we would never have been on this crazy journey in the first place.  It felt like a nice full circle closing, (though of course grumpy pants didn’t think so and is actually all rather bored of ‘mummy’s flippin book’ at the moment!)

I’ve seen a draft version in print before and that was a thrilling moment and it was exciting to tear open a box with Jason and give him the first official copy – note to self, he’s not paid me yet!.  But perhaps the real ‘WOW’ moment for me today was seeing a stack of the books in the warehouse and the first palette all boxed up.  This was more than ‘my book’ it was a bloody great big pile of books all ready to be dispatched to anyone who wants to read it, all over the world.  My stomach lurched and it really was a moment to remember!  “Bloody Hell!”

Getting a book published had been on my Bucket List for a long long time.  It’s almost unbelievable and too much to take in to realise it can now be crossed off!  But this last couple of years has turned into much, much more than just trying to tick off an entry on my Bucket List.  It’s become less about my story and more about the story of Secondary Infertility.  Two words that I had never even heard off when I first added ‘book published’ on my Bucket List.  Two words I’d never heard off when I started, and ended, my fertility treatment.  Two little but significant words that changed my life forever.

Of course I’m excited about getting the book finally published, holding it, seeing what it actually looks like after all these years in the planning.  With regards people reading it however, I’m really quite nervous about looking into the whites of people’s eyes that I know, after they have read it, knowing they will have seen into the depths of my heart and soul  – it’s quite a frightening thought in someways.  The obvious excitement is also tinged with a little anxiety!

Yet truly, the most thrilling prospect today is sitting back at my desk and seeing all the feedback on Twitter and Facebook from couples (mostly girls) who want to read the story and who I know will feel comfort and understanding.  They are the ones it was written for.  They are the ones I imagined each night as I tapped away.  I wrote 102,000 words detailing our story but really I just wanted to say “you are not alone, you should not feel guilty, it’s OK to want another baby” over and over and over again – perhaps 102,000 times!  Yet that book wouldn’t have sold for sure, and writing about our most intimate moments and thoughts, seemed to be potentially a more interesting read.  We’ll certainly find out over the next few months!…….

So my excitement tonight is a little premature.  This is a personal achievement for me for sure but it’s not really crossing the finish line until the book is in the hands of someone who it was written for, who needs it, who will benefit from it.  When they put it down and sigh saying “I finally feel understood” and toast that freedom with a large G&T then I will really be able to WHOOP WHOOP!

To remind myself of the very last paragraph in the book:

And finally thank you to the publisher who turned me down and said “There isn’t a market for this book.” You lit a touch paper in me I never knew existed and prompted me to prove you wrong. There is unfortunately a huge market of couples across the world that will sadly appreciate, buy and benefit from this book and it is my intention to reach them. They may not know it yet, they may be unaware of the name of their condition, but without your rejection it would never have been my mission to tell them.

What I really wanted to finish that paragraph with was FUCK YOU!!  #fingersalute

 

 

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Secondary Infertility Matters

“Can I please share your fertility story?”

Secondary Infertility MattersSo much has happened in the last week, I honestly feel exhausted.  After working till the early hours for weeks on end, last Thursday my new website finally went live.  It was supposed to launch today, just a day before National Fertility Week UK, but after Fertility Network UK launched my films on their YouTube channel and Hull IVF Unit released their press release about their new campaign #DareToShare that featured a quote from myself, I had to rush the launch through in case the web address featured.

At the same time as amending PayPal coding and proof reading my pages I was racing too and from the IVF Unit juggling interviews with Viking FM, KCFM and ITV Calendar News!  After weeks of preparation it was all over and done in a flash and I was talking about the new site staring down the camera of the regional news!

But it was all good.  It was all hugely positive and just one of many steps towards raising the profile of Secondary Infertility.  So far, I’ve not personally promoted the website just yet, I’ll be putting it on my Facebook page later tonight, but already, just from promoting the YouTube film the feedback has been fantastic.   As I write, the video has been shared 17 times by my friends and family, how terrific is that?!

One asked: “Is it OK to share?” which was lovely as I’m a stickler for Facebook etiquette and respecting privacy but I was like “hell yeh! share away as much as you can, that’s why I’m doing it!”

The response in their comments has also been fabulous and very rewarding, though it has actually got me thinking ‘why on earth have I taken all this on after the life we’ve put ourselves through the last 5 years?’  I’m still wondering now TBH.  But, what I do know, when I’m not trying to analyse myself, is that it’s the most natural instinct in me right now, behind my family.

I don’t think you ever forget an experience that took you to the brink.  That was Primary then Secondary Infertility for me.

I don’t ever think you forget a comment that stung you.  That was the reply from a publisher who said there wasn’t market for SI books because people didn’t search for them on Amazon for me.

I don’t think you can forget other people who are trapped in horrid position you have been fortunate to have escaped.  They are those still trying for a second child feeling guilty and alone.

Two words people have used a lot over recent days have been brave and inspiring.  They make me very proud but I’ve never felt brave, I certainly don’t mind sharing my story because I know the huge value it has compared to any embarrassment I may have.  Inspiring is an interesting word as it generally means you encourage others to do the same – I hope I do.

If more people who have suffered Secondary Infertility, or even Primary Infertility shared their stories highlighting the pain, the background to the treatment, their coping mechanisms, their successes or how they handle failure, the more people will feel comfortable if they are suffering. We who have been through it must share our experience to ‘normalise’ and ‘de-stigmatise’ fertility treatment.

I hope this feedback continues to grow as promotion of the website, Youtube channel and Facebook page start to grow over forthcoming months.

There was one comment however that could have stopped me in my tracks and say “job done”.

It was from a girl in Pennsylvania who messaged me to say “Thank you for sharing your video. As I sit in my car crying, it was so comforting to know that I’m not alone. Thank you”  I know how much it meant to her because there was many I time I too had been sat alone crying.  I remember the very first time I identified with Secondary Infertility – it was so so utterly refreshing to recognised the situation I was in and know it had a name, I was part of a group of people, and realise it wasn’t just me!

Whilst I wish there was no more ‘girls in Pennsylvania’, I know there are hundreds we need to reach, so again, I say in answer to your question: “Hell Yeh!  You share the ass off my story and let’s do this together!”

 

Progress? I’m not sure

So what’s happening?  Well this all started with writing down my journey to help another couple faced with SI.  Then it became about achieving an ambition to have a book published which then turned into a mission to demonstrate to publishers just how big an audience is out there needing information on this topic.

It is now a crusade.  Having spent 2 years (whilst setting up a new business and running a family home) doing my bit to raise the profile of SI, I’m feel we’ve taken one step forward and two steps back.

So yesterday it was finally confirmed that SI would not feature at the Fertility Show in November because ‘it didn’t fit in’.  I was gutted.  We have recently determined that statistic that 1 in 3 of the 1 in 6 couples struggling with fertility already have a child – that’s 1 in 18 with Secondary Infertility.  It’s great to now know this stat, but it’s frustrating that people still don’t recognise the condition to give it focus.  It’s easy for them to say “Secondary Infertility is important” but still they don’t give it the attention and exposure it deserves and as a consequence the condition remains in the dark, as do sufferers.

My first problem with SI was simply that I didn’t know the name existed.  If we could just shout the name out from the rooftops more sufferers would become engaged.  If we could get them to identify with their own situation they would know where to seek more help.  That would be a huge start.

If we could help treatment providers and support networks to learn how to deal with SI sufferers and their unique situation it would help make SI “fit in” and therefore provide the appropriate information and support in clinics.

My messages are simple

Secondary Infertility is still Infertility

Sufferers are not alone, should not feel guilty and are not greedy

There are unique and specific challenges that need to be addressed for sufferers

More people in the Infertility profession need to recognise the condition

Communication and awareness must be improved

Next month I will be launching a brand new website with information and support specifically for SI sufferers.  A brand new online support and information portal that is UK based.  We may have not made it to the show in 2016 but boy oh boy, 2017 here we come!!…….

Hello my old friend – Fertility Road Magazine

The waiting room at Hull IVF Clinic is a very strange place.  For some reason they have all the chairs in a square, facing each other, which is strange given most clients don’t want to look at anyone else or be seen by anyone else.  They then have what I always thought was the most bizarre collection of fake Irises in the centre, which I guess could perhaps be strategically placed to disguise clients?  And they then have a couple of coffee tables with magazines, which is where I first came across Fertility Road magazine.

Now don’t get me wrong, it’s a lovely waiting room, very calming, with lovely personnel attending to you.  There is a water machine, tea and coffee station and lots of information on the walls to read whilst you are waiting.  There is also a board full of photos of babies obviously successfully born with the assistance of the wonderful team there.

And yet, as I used to sit there, head down avoiding eye contact, I couldn’t help but look at the next person through the door, check out the next couple leaving the consultants’ rooms or the next lady calling at reception to collect her drugs.  It was like a flipping car crash that even though you didn’t want to look you just couldn’t help rubber necking!!

And so, Fertility Road magazine became my life saver.  I’d stare at the pages of the latest edition trying to focus on anything but anyone else around me!  It was also jam packed of information targeted at people like us, unlike any other publication around.  It was so refreshing!

As my mission to raise the profile of Secondary Infertility got new impetus this year, I was so delighted when the Editor agreed to publish a short article I wrote about my ambitions to break taboos and encourage people to talk about all kinds of infertility.

If only I could have told that broken girl in the waiting room the journey she would go on and how one day she might end up in that magazine she was holding.

Then again, she would never have believed me!

Will it always hurt this much?

I was recently asked by someone who was hurting from a failed attempt ‘Will it always hurt this much?’

My first gut response was to blurt out yes with my next breath, but fortunately I was able to hold onto that thought and think some more about it.

The pain of infertility is a lot like grief I believe.  You grieve for a child you lost of thought/dreamt you had, you grieve for a life you might have had together and you grieve for the ability to create life which seems to be taken away from you.

Grief sucks.  It hurts.  It’s an immense pain.  At the time you feel you will never get over it and it will always hurt that way forever.

Time isn’t a healer but time is brilliant at helping your body, mind and soul adapt to carry that grief.  You learn to live with loss.  You learn to adapt your thoughts, behaviour, habits to cope with the loss of whatever it is you once had but now have to live without.

You learn to live with infertility.  You wake up each morning learning a little more how to deal with everyday life carrying the burden that you are still unable to conceive.

I don’t believe it hurts less.  It might not be as acute as on the day your period starts or the day you miscarry or the day your scan doesn’t show a heartbeat but it will always be there.  You cope better, you get stronger, you get wise to the world around you and adapt to stop it hurting you as it did before.

And so my answer?  The pain of fertility never leaves you, but don’t worry, you get stronger.  This will get easier and being strong will become the norm.

With love to anyone hurting.

In their shoes – and I don’t like it!

Each time my treatment failed or my period came, I became hardened to that pain and became deaf to my loved ones soothing words.

Their sympathetic repetitive phrases used to drive me mad and the helpless look on their faces as they struggled to find anything to say to help me was almost as painful as the despair itself.

I did feel sorry for them.  I did long for them not to feel any pain and often, once the realisation that we had been unsuccessful yet again had sunk in, I’d start to dread telling friends and family, knowing that they too would be hurt once more.

Recently, I was supporting someone I have known for years through her fertility treatment. This time, her fourth cycle, she seemed to be passing every hurdle brilliantly and she got further than she had ever got before.  And then she shared her tragic news.  It was not to be.

Whilst I have supported a number of girls through negative tests, miscarriages and failed cycles, this one hit me harder than any before.  I was convinced it was their time.  I had no words.  I literally did not know what to say to her and for the very first time I wanted to get on the phone to my Mum, brother, sister in law, big sister, friends and wider family and say how utterly sorry I was for everything I put them through.  For all the times I growled as they tried to find something to say.  For all the grunts when they said they were sorry for us.  For all the times I left the silence between us as they struggled to make me feel a little bit better.

It was horrid.  I felt useless.  I realised just how hard it had been for those around us.

In the end, after expressing my sorrow of course, I used the words with her that I found to be the only words that helped me. “It’s shit”

I found in saying these words to friends and family, it let them off the hook in trying to find clever words to fix the situation.  There are no words, there is no fix, the situation is just shit.  I knew it, they knew it and actually, bluntly acknowledging the fact always made me and them feel better.

They say swearing demonstrates a poor vocabulary, but when all else fails – who gives a shit?!

At what cost a child?

http://www.dailymail.co.uk/femail/article-2926471/Woman-appeals-donations-strangers-afford-IVF-refused-treatment-NHS.html

This story is in the paper today about a woman whose only hope of a child is through IVF as her partner had testicular cancer, but because he has also had a child in another relationship before the cancer, the NHS refuses to fund their fertility treatment.

Her mother describes Eva: ‘Eva is a shadow of her former self. As Eva’s parent I have watched how the desire for a child has affected every part of who she is.

‘Eva has lost her confidence and self-esteem… she is depressed, angry, and always emotionally fragile.’

Funding debates are complicated and views are subjective and having had to pay for four rounds myself i am obviously fairly one sided in my views. What frustrates me mostly in the ‘should fertility treatment be funded?’ debate is that the fertility organs aren’t viewed the same as any other organs that aren’t functioning properly. It takes two to tango, two people and two sets of fertility organs to create a new life – if one of those isn’t working properly why are these not eligible for funded treatment? Unjust? I think so. Needs addressing? Definitely. I consider myself lucky to have afforded 4 rounds but there would have shortly come a time where I could not have afforded another round, if that time had come after three rounds I would not have my babies today. Unbearable thought.
That Eva has had to resort to the Gofundme site is testament to the pain longing for a child creates and her sheer determination to be a mummy. I hope she is successful. But then her real battle starts and I wish her success with her treatment too.
I can’t ever remember seeing a morbidly obese person launching a Gofundme site for a stomach stapling!! #unjust