In Her Words… Life After Death by Abbey Craig

Abbey Craig first wrote for The Muse in June 2017, shortly after she had received a diagnosis of terminal cancer.  The diagnosis followed a year in remission after acute treatment for primary breast cancer in 2015 when she was 37 years old.

In 2018 Abbey was given the highly unusual option of a rib removal for her cancer to be further investigated.  A couple of months later, after a slew of tests it was decided that the damage in the rib had not been caused by cancer after all and was healing from time, not the cancer treatment. So, it was agreed, no secondary cancer.  The terminal cancer diagnosis was, in fact, a misdiagnosis and Abbey is now in remission from her primary cancer and continues with treatment to help maintain that.

We asked Abbey to write a follow up piece to her original letter (you can read it here if you haven’t done so yet) to reflect on her misdiagnosis and on how she lives now.

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In Her Words… 

Life After Death by Abbey Craig

When I was dying, and we all thought I had a year or so left, I wrote a letter to the 11-year-old me on how to avoid pitfalls, in which I tried to guide the younger me down a better path.

“Be well, be healthy, be happy and be free…  Live! Make me proud to be me.”

So, did I really listen and hear my own advice? Am I living life the way I’d urged myself to?

I’ve tried to keep those words with me as my moral compass; it’s not always easy, bad habits can come creeping back.

I wrote about how the first diagnosis of cancer had un-encumbered me of self-loathing about my appearance. The ‘black cloud’ that had made my body and mind weak, sad and sore in many ways, had been lifted.  To live without that burden is joyous, and unlike before, I have many photos to prove it!

But what next?  Once I’d written that letter I still had months of the misdiagnosis ahead of me.  What else did I learn, if anything? 

Believing that I was dying, here’s what happened next…. 

I went into organisation mode, I am a control freak! It felt right to get things planned and in place for my death and its aftermath. So, the ‘The Death List’ was compiled and the next few months were all about completing it.

• Funeral service and wake planned  ✔
• Letters and gifts for friends and family  ✔
• Banking and official documents sorted  ✔
• Memorabilia binned or passed on, including old letters and anything that might cause confusion, embarrassment (old diaries!) or hurt in the future  ✔
• Excess clothing and shoes given away  ✔
• Suitable support organised for loved ones beyond death  ✔

This period of time was truly heart breaking because of the absolute focus on the lead up to death and of the lives of loved ones following my death.   But then came MY time. The list complete and the envelopes and boxes sealed and addressed, it was time to focus on the time I had left to be ALIVE.  I’d done all I could to prepare, so now I had to put aside the fear of death and illness, with the knowledge that I had it covered, as best as I could. 

“I had clarity and I felt entitled to achieve what I could, before I got too sick.  ‘I’ll sleep when I’m dead’ became my mantra. I stopped planning and just ‘did’.”

Essentially I had to stop focussing on how people would cope with my death, because ultimately, that was their pain, there was nothing I could do about that. To continue to focus on that would have left no hope for happiness or pleasant new memories to be made and really, what the hell would be the point in that?  It sounds harsh but it was advice given to me and too important not to pass on.

I had clarity and I felt entitled to achieve what I could, before I got too sick.  ‘I’ll sleep when I’m dead’ became my mantra. I stopped planning and just ‘did’. 

We made the decision for my husband to sell his successful business in London on the quick so we could move back to Scotland to be close to family, we chose a lovely cottage by the sea, owned by family friends that had a bedroom with a view of the sea which we imagined might have become my final view out to the world.

During this time I focussed on continuing to research for the children’s books I wanted to write with my dad.   Having a terminal diagnosis opens doors, I was granted extraordinary access to people, in hospices, in hospitals; children and families in their very homes.  A new world opened up and accepted me easily into it and I felt a belonging I’d not experienced for quite a while. 

“It came to me: The realisation that I had actually lived the least tragic life anyone could have hoped for!  If I’d died then, even if I die today, there will have been no tragedy.” 

My previous letter admits that I had laboured for a near-lifetime under the misconception that I’d be infinitely happier if only beautiful.  Whilst I was dying, the realisation came that it wasn’t just beauty that I had aspired to, but a romantic sense of tragedy.

From a young age I’d bought into the idea that being a tragic heroine, whatever the tragedy was, would validate my life.

I realised that internalising the tragedy-myth as a teenager and aspiring to be interesting and alluring, had in fact created real misery through insecurity, unintentional attention-seeking and poor decision-making and in the face of death I didn’t want to be sad or for anyone else to feel sad because of me.  It came to me: The realisation that I had actually lived the least tragic life anyone could have hoped for!  If I’d died then, even if I die today, there will have been no tragedy. 

Abbey performing stand up

Of course every death is heart breaking and untimely for the person who doesn’t want to die or for the people left behind, that’s a given.  But someone dying a long drawn out death when they’d rather be dead; a death going unnoticed; desperate life decisions leading to untimely deaths; deaths due to poor mental health; violent deaths; children who have so much still to experience or those who have suffered much of their life and didn’t experience how amazing living can be – Those to me are tragic deaths and none of those experiences applied to my life.

“To deny an end of life option makes living so much more painful and scary when you live with death’s presence so close.”

During this ‘awakening’ I read extensively about death and palliative care specialists guided me to books written about facing death. I realised that having no religious faith meant ‘being dead’ was not a scary prospect; there was no ambiguity in my mind.  How I might suffer on the way to death was scary, in-fact it terrified me.

My way of controlling it was to sign up to ‘Dignitas’ in Switzerland where I would be able to travel and be assisted to end my own life, peacefully.  This involved a traumatic conversation with my husband and parents to discuss my wishes and £8000 to cover travel, accommodation, the procedure and a cremation (which would make repatriation easier).

Once this was in place, the relief I felt was immense, indescribable in fact.  I’d spent months agonising over a possible alternative, stockpiling any medication or pain killers that I thought might do the trick, going without sleep and in pain sometimes to be able to do so.  

And so I had ticked something else off my Death List, I wished I’d known to deal with it first off instead of hiding from its darkness, the relief was so impactful on my whole wellbeing. 

• Death options discussed with family and medical staff, arrangements in place  ✔

People live with physical differences, poor mental health, chronic pain, complex health needs, illness, tragedy, terminal illness and grief and the world as it stands disables so many of us from living life as well as we could. I truly believe, along with every single person I met during my cancer treatment, that to deny this end of life option makes living so much more painful and scary when you live with death’s presence so close.  

After becoming a member of DIGNITAS there is still a long and thorough process to be able to access the service. It includes many in-depth background checks and prerequisites not least the need to be of sound mind and able physically to self administer the drug (and to make the journey to the facility). Also, a member has to have a terminal illness, ‘an unendurable incapacitating disability and/or unbearable or uncontrollable pain’ for access to be granted. I believe the person in pain and/or dying should be able to choose when to end their own suffering and lawmakers should be listening to those people. Before my own terminal diagnosis I shied away from ‘taking a side’ on the assisted suicide debate, now I can say,  when following these guidelines, I support it 100%.

“People nearing the end of life because of illness or age are only in limbo if the rest of the world puts us there.”

During my own misdiagnosis I adopted ‘living with’ as opposed to ‘dying from’. Such a small but crucial phrase to adopt when talking about LIVING WITH illness, even if it is LIFE LIMITING.  The words ‘terminal’ and ‘dying’ sound so painful and final, as if a life has already concluded. ‘End of life’ or ‘palliative care’ mean something very different to me now because of everything I’ve experienced.  Yes, they partly mean, ‘helping to die well’ but far more than that they’re about ‘living well’. 

Sometimes when I was ill, it felt like I’d been written off already, like people were already disinvesting from the REAL me or even that people might be saying over a coffee somewhere, “Did Abbey die yet? Poor Barry, her poor parents. Are you having that slice?” 

It’s not the lack of actual emotion I object to, not at all, it’s the dismissiveness of a life that is still being very much lived, until it’s not.  People nearing the end of life because of illness or age are only in limbo if the rest of the world puts us there.

I’ve learnt that each older person or person living with a complex health need or illness is very much alive, even if they are changed, or not the same, to the outsider.  Everyone feels as alive and as vital as they’d always done and no one wants to be written off, not until they actually stop breathing for good. 

Everyone is dying. I’m still dying, I’m just not living with an illness!

“I made a vow to always keep my work/life balance tipped in favour of life and to only do work that I genuinely enjoy, believe in and that causes a minimum amount of stress.” 

By the time the misdiagnosis news came, we were already in the throes of saying goodbye to all that we loved (and didn’t love) about London. The repercussions of our decision to move to Scotland have been the biggest for Barry who left behind a thriving business that he undersold to set us free to move immediately, in doing so we lost the financial security that we’d been working towards.  But there are many things we cherish about being here and leaving London wasn’t the painful wrench I thought it would be because I’d originally thought I’d be saying goodbye forever. I visit as often as I can.

Abbey on the day of hearing of her misdiagnosis

Being by the sea, next to family and old friends and living a different pace of life, offers us more security.

Whilst my dad and I are still committed to and passionate about writing and illustrating the children’s books we have planned, finding the time to do so is more difficult now that I have to earn a living!  I made a vow to always keep my work/life balance tipped in favour of life and to only do work that I genuinely enjoy, believe in and that causes a minimum amount of stress. 

Barry and I started Tick Tock Together in Scotland. We offer interactive music and drama sessions for children under 5 and bring popular songs and rhymes to life using puppets and role play.  Tick Tock was established in London over 30 years ago by my friend who generously told me when I was moving that I’d be welcome to use it in any way I could.  It fitted with my new specifications for work, something I feel passionate about, that is relatively stress free and where I can connect with people; children in particular.  We’ve realised that we can incorporate some of the important aspects I want our books to include; a fantastical fun adventure for EVERYONE, inclusivity; we have puppets and characters to represent everyone in the world so Old MacDonald is a female farmer; our fairy tales include Queens who are men; we incorporate hearing aids and glasses without them always being the focus and being old or having a complex health need is just part of the norm for our puppets.  We hope this will familiarise children with perceived ‘differences’ so that they can explore and ask questions that they might otherwise not have the chance to ask or have even been told specifically not to! 

Abbey and Barry in action together for Tick Tock

As well as representing ‘every person’ in the sessions we’re trying to make what we do accessible to every person who could benefit from it. So I adapt our shows for much older people and/or people with dementia, or for young people with complex health needs. We think Tick Tock Together is perfect for doing what the name suggests, bringing people together. 

“My family and I have no interest in being angry or trying to lay blame for the secondary cancer misdiagnosis.”

I work for the Royal Voluntary Service running a singing group for folk over 50, one of the highlights of my week, there’s so much laughter, even if it’s at my expense!  Under the Tick Tock Together umbrella I aim to develop intergenerational work and hope to bring together the various groups I work with to contribute to other work happening in Dundee and Angus, all helping to create a ‘caring community’.  

With her singing group the Singing Buddies

I know that pain, in some form, is just around the corner, that’s the nature of having a life that you value and want to live fully, and of having people you love in your life.

I hope that I will be able to handle whatever life throws at me as stoically as I see many of my friends and family deal with life’s rollercoaster. I know that I handled living with cancer pretty well, but I was always sure the suffering was far worse for my loved ones and of course I was pretty fit and well and able to still enjoy life fully when I was ‘dying’.   

Every day I try to see people that I love and that I think I can give love to, and I choose to try to enjoy what is now, instead of being fearful of what the future might be.

I will be forever grateful to everyone who held me and my loved ones through that particular crisis in our lives and I hope I am moving forward in a way that my dying self would approve of!

My family and I have no interest in being angry or trying to lay blame for the secondary cancer misdiagnosis.  We understand that as badly as we may want it to be, medical science is not 100% reliable. We continue to be eternally grateful for the NHS and will fight in any way we can to prevent its continuing privatisation.

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Pass it on:

Who would make brilliant guests on the Muse? Please suggest up to 3 people with their Instagram and Twitter handles and we’ll invite them to join us.

Marnie Baxter– My friend Marnie is an actress and her first short film, Bad Mother, that she co-wrote and directed, did really well last year winning several awards.  Instagram: @eidlass78

Fi Munro – Fi, whose blog is included in my list above, is incredible. She’s living with ovarian cancer and has written books including How Long Have I Got?  Her motto is ‘live like you are dying’ which, in her words means: ‘Embrace today. Live for the moment. Stop worrying about the future. Focus on today. Laugh more. Take the risks. Follow your dreams. Be unashamedly you. Make the day good.’   She’s fierce, funny, truly inspirational and says fuck plenty. 

Some of the books and organisations that help Abbey to live well are listed below:

https://www.goodlifedeathgrief.org.uk

http://www.dignitas.ch/?lang=en

https://www.dignityindying.org.uk/assisted-dying/

https://en.wikipedia.org/wiki/Duck,_Death_and_the_Tulip

In Conversation with… Kym and Jade

Kym & Jade have been together for 11 years and married for 4 of them. In some ways they are very different, but in many others very alike.   After a couple of (not hugely successful) pet-owning attempts they decided it was time to get serious so they got married in a room full of loved ones, got a mortgage and had a child. Here is their story of an unconventional family.

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Can you tell us about how you became parents?

K: Like any other young couple we had decided that there was more to life than nice restaurants, travelling and lie ins (note we were wrong!) so we decided to introduce a sprog into our little world! We visited our doctor to find out exactly what the options were for lesbians to have a baby together and from there we spent a lot of time browsing donor sperm catalogues, yup it’s a real thing! We then spent a year or so visiting clinics and so on until we got a positive result on a pee stick. Fast forward 9 months and we welcomed our beautiful baby boy into the world.

J: It was something we have always discussed, we both wanted to be parents eventually. I guess we were at that point in our relationship where we knew it was the right time for us. The process was obviously a very clinical one and unlike most heterosexual pregnancies, we took months planning and screening donors and picking which process would best suit us at that time (IVF, IUI) it was all very new to us and everyone around us. We got there eventually and after what felt like the longest pregnancy ever (because you find out so soon with IUI due to the scheduled testing etc) we took home our greatest achievement yet.

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“My biggest consideration and still is, is society’s perception of our unconventional family. I guess I just don’t want my child to suffer the consequences of our choice to bring them into the world.”

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What were your biggest considerations before making your decision to embark on parenthood?

K: I didn’t have many considerations pre-pregnancy, I tend to run away with a plan without always thinking it through. But during the pregnancy I did consider a few times if we were really “ready” for it. And by it, I mean giving up the luxury of not being responsible for keeping a whole human being alive, fed, loved and looked after. Turns out we’re managing quite well.

J: My biggest consideration and still is, is society’s perception of our unconventional family. The world is so hate-fuelled and when things go against the so-called ‘norm’, that becomes heightened. I guess I just don’t want my child to suffer the consequences of our choice to bring them into the world.

What have you learnt about yourself along the way?

K: I have a lot less patience than I thought I did!  And I care more about “developmental milestones” than I thought I ever would.

J: That sleep is a God given gift, don’t waste it! But seriously, I think I’m learning more about myself all of the time since becoming a parent, that’s the beauty to teach your child, yet learn from them too.

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“I sincerely believe that there is no better starting ground for a new life than it being truly, truly wanted.”

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What advice would you give to anyone else who is considering embarking on a similar journey?

K: Do it. If you want to be a mum or a dad. Do it. Being in a same sex couple doesn’t make a difference, I sincerely believe that there is no better starting ground for a new life than it being truly, truly wanted. In our situation you don’t fall pregnant by accident. No amount of drunken nights of passion will result in a baby for us. Our baby was well planned for.

J: If this is truly what you want then go for it! Life is too short to have regrets and although having a child turns your life on its head, you will gain more than you will have lost.

Would you do anything differently?

K: Probably avoid moving house whilst 5 months pregnant. Maybe save some more £s too. In terms of being a parent, I would enjoy those early newborn days way more than I did. Everyone told us it would go fast and it has. I really miss the snuggly, snoozy, totally dependent on their parent, newborn days.

J: No I’m not sure I would have really. The only thing I can think is that I would have liked to ask the donor a few questions because in situations as big as this you will always have questions (as will our child) but other than that I think we did alright for first timers!

What inspires you and your parenting?

K: Instagram and Pinterest give me loads of inspo for meals and educational activities. But mainly our son inspires my parenting. Watching him learn a new skill or say a new word really keeps me going through the long and if I’m honest, sometimes boring or mundane days of parenting stuff like cooking, changing nappies and watching yet another episode of the pink, bratty pig also known as Peppa.

J: My family, my mother and grandmother are two of the greatest (barring my wife) mothers that I know. It takes a village to raise a young one and I learned how to parent from instincts that I have picked up from them.

What keeps you up at night? (if anything!)

K: Our kid! He’s not a great sleeper. He doesn’t seem to have read the memo that says “you feel heaps better after a solid night’s sleep”!

J: I second that! I think I have definitely become more anxious as a parent, so in all honesty I do worry about things that haven’t and possibly will not happen but that’s parenthood, it’s my job to worry. 

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“Be a mix of the parents that you had/have and the parents that you wanted to have.”

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What was the best piece of advice you ever received?

K: Enjoy them whilst they are small. It’s hard, it really is. But even at 23 months there is so much independence oozing out of this small human that it scares me to think one day he won’t physically need us anymore.

J: Be a mix of the parents that you had/have and the parents that you wanted to have.

What is the biggest challenge that you face on a daily basis and how do you overcome this?

K: Managing being a working mum/stay at home mum means I often feel guilty about something or other. If he’s sick one of us has to try to get time off of work or gauge just how ill he is and decide if he can go into nursery or not. If he’s crying and we’ve exhausted all options I feel awful that I don’t “just know” what it is that’s upsetting him. Mum guilt is a constant battle.

J: I work full time and miss out on a lot of his day. It would be ideal to be home earlier and get to spend family time on the weekdays.

What are you most proud of?

K: My family. Every day my son learns something new and blossoms into a new person. Every day my wife gets up and commutes into Central London to afford us luxuries such as a nice home and holidays. Through the sleepless nights and toddler tantrums we are doing it. We are parenting. And doing it well, if I don’t say so myself!

J: I’m proud of us (Kym and I) for cracking on and dealing with this parenthood thing. I am proud of my extended family for being a support network and accepting our family as the norm. I’m proud of my little guy for being such a bright beacon of light and bringing so much into our world.

Do you have any tips or habits for happiness?

K: Lower your expectations. Chase your dreams. Eat your veggies.

J: Meditate, communicate and don’t procrastinate

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Right Now I’m….

Watching:

SO much Netflix including Stranger Things and Queen of The South as well as for a bit of balance and all that, Tiffany Haddish and Dave Chappelle’s latest comedy specials.

Reading:

K: Michelle Obama “Becoming” – what a woman!

J: I’ve just finished Akala’s book Natives: Race Class in the ruins of empire. Brilliant read!

Listening to:  Beyoncé is always on the list, H.E.R as well but we’re also big on U.K music like Ella Mai, Wretch 32 and Dave.

Pass it on:

Who would make brilliant guests on the Muse? Please suggest up to 3 people with their Instagram and Twitter handles and we’ll invite them to join us.

Caprice Fox @the.fox.family

Bee Adamic – @mamabossgirl

Kira – @kirasocialldn

In Her Words… My Abortion

Harriet Shearsmith is the creator behind Toby&Roo, an award-winning parenting and lifestyle blog aimed at sharing the wins and woes of parenthood. Living in the North Yorkshire countryside with her husband (@tobyandroodad) and three feral children (four if you count Yoda the dog who even has his own Instagram account) she is a self confessed coffee addict, nerf gun ninja and all out bad ass when it comes to hide and seek. You can find Harriet on her blog here and her Instagram here.

As an advocate for women’s rights and someone who claims to be stoically pro choice, I always wrote about abortion from the other side of the table, the lucky side, the side that hadn’t had first hand experience. That is, until I wasn’t writing about it as an outsider, but as one of the club, one of the women who had made the difficult decision to have a termination for all the reasons that made sense but didn’t necessarily help make it any easier.

I didn’t have an abortion recently either, this is a throwback to dark times three years ago and yet I still haven’t been able to talk about my experience first hand. For three years I’ve defended the right to have a termination – for whatever reason – but never actually felt like I could declare I had been through it myself. Friends who have confided in me, like they are admitting something shameful and harmful have been met with my kindness but never an admission, even though I could give one. I couldn’t find the words to say that I had been there. I couldn’t do it through a fear of being judged and because everything was so raw for so long. Termination is so shrouded in guilt and shame that even when we so firmly believe that it is a woman’s right not to have to continue with a pregnancy, not to become an incubator without thought or feeling, we struggle to make peace with it ourselves.  That is society’s fault, it is the fault of lawmakers and religious nuts who hide behind politics and religion to control. That is not on us.

This is my story of abortion.

The pill and the coil had had really negative impacts on my health in the past and I was still breastfeeding so I was incredibly limited as to what contraception I could take, so Adam and I decided to use family planning. It had worked for us in the past, only falling pregnant when we weren’t really trying to prevent and were happy to go with the flow. This time however, we had a pregnancy scare and I was mortified. We both were. Edith was 8 months old, we had 3 children 4 and under and there was no way, not a chance, that we were ready to welcome another life. Not for my mental or physical health with a tenuous section scar or Adam’s. No.

So onto the pill I went. Turns out that pregnancy scare? We will never know if it was a scare or just missed because I was so early, but 6 weeks later, a completely normal period and 6 weeks of taking the progesterone only pill, I was pregnant. Shit. We made the decision that I would visit the doctor and take what is affectionately termed the ‘abortion pill’.  Nice.  At the time I was showing as only 2-4 weeks pregnant so in theory we had caught this early enough, despite the failed pill and there would be no heartbeat and the tablets would be the simplest and most effective way to end a pregnancy without too much trauma.  A scan would determine whether or not I could have these tablets – which I would later find out have varying levels of effectiveness from 20% to 80% depending on which ones you wanted to take, which is a testament to how very shit our system is in supporting the women that need this: ‘it ain’t very effective, love, but it’s your fault you’re pregnant so you should suffer through this first’ is the undeniable subtext here and no one will ever convince me otherwise.

I wasn’t only 2-4 weeks, I was 6 weeks.  I sat, alone because Adam didn’t take time off work for the appointment – didn’t want to explain what was going on in order to ask for time off… after all, it wasn’t really his problem now was it? That is how it felt at the time – perhaps that wasn’t fair, distancing yourself is a good tool of self preservation, but at the time the toll it took on our relationship was huge. I took the tablets, first one and then after 6 hours another. I drove home alone, despite a warning on the tablets to have someone with you – there was no one, Adam went to football because he didn’t want to think about what I was doing, needed a bit of space. It’s one thing in our marriage that I don’t think I will ever forgive him for, but it’s a shining example of how men view abortion and why the laws in some countries are the way they are: it’s not my problem.  Even when they love you. It’s just not their problem. You are the one who is pregnant now, despite their involvement.

The tablets, which should have stopped the pregnancy and made me bleed so heavily that I felt sluggish and ill for days, failed. They failed. At 13 weeks and 2 days I went for a scan to ensure that the tablets had worked but they hadn’t, there was a foetus – a baby that had a heart beat and a 98% chance of having some kind of life limiting birth defect, that couldn’t possibly be discovered until 20 weeks, even with all the tests in the world. A combination of taking these tablets to end pregnancy and continuing with the progesterone only pill meant that the chances that this baby could survive and be born healthy were nill and if they did survive? The impact that would have on our family was not something that I was willing to place on my living children when the decision had been made weeks before, not something I intended to spend my life beating myself up over for choosing to end a pregnancy and it failing, so bringing a life I had damaged into the world.  No way.

I had to go through it all again, but this time an invasive operation that I had taken the tablets to avoid. The first time I thought I had grieved for what we both felt we couldn’t keep, but this time was different. Again, Adam didn’t get the time off work, he says he asked but I will be blunt, I never believed that he did and I don’t think that is unfair. It’s a self protective mechanism isn’t it? To distance yourself, to walk away. I try hard not to blame him for that, not to resent the fact that I felt so alone because, realistically, if he had been there I would have felt so alone anyway. You are alone in that decision. You don’t get that luxury of walking away from it or separating yourself when it’s in your body which is why the choice should always, unequivocally, be yours.

At this point the pregnancy was too far along to perform the D&C without a general aesthetic, so that is what happened, I remember such kindness and compassion from the staff – they didn’t judge, they were probably the only ones – as much as my mum said she didn’t, I always felt she did deep down and friends didn’t know.  I didn’t tell anyone until months after.  I remember waking up and I had been crying in my sleep, the nurse who handed me a glass was the same one who gave me the tablets in the previous clinic and she told me that they were ineffective but that they weren’t really allowed to tell women that. Great stuff.

I came home and Adam came back from work, he tried so so hard to be there, to make up for NOT being there when I really needed him but it was a bit little too late.  At 13 weeks, I didn’t really want to end that pregnancy at all.  That’s the truth. That’s what stings.  I did what was right at the time, I know that, it was right for my mental and physical health, right for my husband and right for my children, but it was not something I wanted to do.  It was something I thought I was preventing, something I took steps to prevent.

For weeks afterwards I would cry, sporadically. It damaged my relationship for a time and it damaged me in more ways than I care to admit.

Abortion is not the kind of thing that a woman (or most women) do flippantly.  The other 5 women in the room with me post D&C were all being collected by husbands or long term partners and every single one already had children but had made this decision for all the reasons that they felt were right. In fact, statistically, more than half of women who have abortions already have children and the majority of abortions carried out in the UK are on women in their thirties who have made a conscious and well-balanced decision.

Abortion clinics aren’t like you see on the TV, they are filled with women who are having this procedure for a number of reasons – they have no other options because the foetus isn’t viable, there is an issue with their health or mental health, they don’t have the house space for another child… so many reasons, but these were not teenagers who just couldn’t be arsed to get themselves on the pill – that is not the case.  For some, it’s just not the right time for a plethora of reasons and surely, surely that is better than birthing an unwanted child and placing it in a system that just doesn’t care.  I remember saying to a friend that I had been for a D&C and instantly her response was to assume that I’d had another miscarriage and it was something that I would be sad about, struggling with. It was, but for very different reasons, which only made me feel more alone and more ashamed.

I wanted to share my story, my personal experience for a few reasons – it’s cathartic to write about it is certainly one reason to write about it, but more than that, I wanted women who had been through the experience to know that they aren’t alone.

Statistically, one in three women will have a termination at some point in their lives but it is so rare that we talk about it.  They aren’t the only ones who have been there, who have found themselves in the position of not wanting to have a termination but feeling that there are no other options. Of choosing their living family, the ones that need them now over the potential life.  I wanted to share this because it’s an experience that so many women, far more than I ever would have expected, have been in these shoes but feel so very alone. The fear, the guilt and the self judgement are far worse than anything religious nuts or crazy pro-life activists can throw at you.

Talk about your experience and DON’T judge yourself.  You did what was right for your family, just like I did what was right for mine.
H x

This article has been adapted from Harriet’s blog where she first posted it earlier this year.

Pass It on:
Please nominate up to three women that you’d like to see featured on The Muse

I love reading these three strong women’s posts on insta and beyond and the kindness that they truly practice and preach behind the scenes:

Hannah Flemming – @hibabyblog
Dommy Crick – @milk.mutha
Candice Braithwaite – @candicebraithwaite

A Letter to… Our Last Embryo

Rachel Cathan is a writer from Bedfordshire. In 2001, a mutual friend introduced her to a part-time pub DJ in Southend-on-Sea. A month later, they had moved in together, around seven years later they tied the knot, and a little while after that – just like so many couples before them – they made the exciting and terrifying decision to start a family. And then, like a growing number of couples today, well…not a lot happened.

Throughout the subsequent years of fertility investigations and failed treatments, Rachel kept a diary of her experiences, and it’s from these first-hand encounters in the world of infertility and IVF that her first book, 336 Hours has been adapted.

Rachel is mum to Ruben and Delphine.

Website: www.rachelcathan.co.uk

 

Dear Speck of Dust (for that was the size of you when we met five years ago),

You might never know how we used to talk about you, even wave to you on occasion as we drove past the turnoff for the fertility clinic where you lived.

‘Hello, little one’ we would call out, and just for a moment my heart would lurch in recognition of the life that could one day be mine. But then I would check myself, realise my foolishness, and feel the searing shame of knowing that this was as close as I could get to calling myself a mum.

Six months had passed since the day you were conceived, and finally the day had arrived to thaw you out from your frozen state and bring you back to your home.

You won’t recall any of this, of course. And nor will you recall the trusty weekend staff who had given up their Sunday morning to perform your transfer; a compassionate gesture since your mother had (typically) ovulated on a day that was not conducive to normal opening hours. But I can see them gathered around us still, the embryologist holding out a miniature straw, no bigger than a sewing needle, containing our last embryo.

‘Mrs Cathan’ he told me, ‘I need you to confirm this is yours.’

I can feel the sweat trickling down my arms and prickling the skin behind my knees, as your transfer was performed to the sound of Beethoven’s Symphony No.9 in D-Minor. As we laughed uncomfortably at the dramatic choice of soundtrack, I attributed my sweat-drenched self to the uncharacteristic 32- degree heat outside. But we were in a state-of the-art, fully air-conditioned laboratory, and the truth is I was as scared as I had ever been.

I feared so badly that you were destined to be only a dream, like a beautiful town, glimpsed from behind the closing doors of a train, whose imagined possibilities would haunt me for a lifetime.

Is this what you would come to represent? The road untravelled; the opportunity missed; the one that got away?

The next two weeks passed in an agonising time-warp that seemed to last for months. Like Schrödinger’s cat, you were hidden out of sight, arguably both dead and alive. I analysed every twinge, every pulse and every pinch. Even quantum physics could not bend my mind like the days that would determine your fate.

But that was five years ago. It’s 2017, and I now know the result that those two weeks would bring.

All I can say is it’s just as well that the embryologist couldn’t tell us too much when he introduced our embryo in a straw. He couldn’t tell us that what he held between his thumb and forefinger was a time-travelling collector of dinosaur relics, a superhero fanatic, and a swashbuckling leader of a mutinous pirate crew: the infamous Caption Walrus.

 

He omitted to mention that, if successful, this embryo would be leaping from armchair to sofa by day, a cutlass whistling through the air above his head. And then sprawling diagonally across our bed each night, a tattered blue rabbit fiercely tucked under one arm.

I’m so grateful that there was no information sheet explaining how the contents of our straw would grow. Because how could I ever have borne the responsibility? How could I have survived the two weeks before the pregnancy test, and indeed the nine months that followed, knowing the scale of catastrophe if I didn’t get you into this world?

You had to be here; it’s so obvious to anyone now. How could our planet ever have been complete without that miniature John Travolta dimple in your chin? How could I bear to be awoken without your face a millimetre from mine, demanding I answer an urgent question about the dubious superpowers of Popeye?

It’s just as well, too, that our embryologist was at a loss to share the less enchanting traits of your character: your stubbornness, which would turn every remaining dark hair on my head a solid grey, and your night-time alertness of a bat.

They offered me no advance warning on that fateful August day that you would be a plunderer, not only of treasure, but also of sanity and sleep. I didn’t realise that the world and its many failings would soon be solely my fault, or that I would so often be walking the plank.

But just as you have no idea of your beginnings, you are probably also unaware that I am secretly enjoying these things to which you drive me each day: every eye roll, every coffee, and every sigh.

I will be forever thankful that you pulled me through those closing doors and on to the other side. And that, whatever happens from here on in, I would every minute choose the reality over the dream.

Rachel’s first book 366 Hours is available now from Amazon and all good bookshops.

Right Now I’m….

Watching: Andy’s Prehistoric Adventures on CBeebies and Catastrophe on Ch4 (not with the same viewing companions, I should add)

Reading: The Unmumsy Mum Diary and Hurrah for Gin (must-have reads for bad parenting days)

Listening to: BBC Radio 2 (I’m no longer fighting the fact that I’m old)

Pass it on:
Who would you most like to see featured on this blog? Please suggest 3 people with their Instagram or Twitter handles

Rachael Rogan: @RogansBooks
Rachael owns a fabulous independent bookshop in Bedford and made a trip to London to meet with Lucy Mann and Sophy Henn last year. She would be a great contributor to The Muse!

Rosanna Slade: @RosannaSlade
Rosanna runs her own yoga practice in Bedford – inspiring woman with a great outlook on life and now a new mum.

Delyth Johnson: @Thischangedme
Delyth is the co-creator of the app, This Changed Me – an inspirational way to use technology to create a better work/life balance and achieve personal goals.

 

 

In Her Words… by Sheila Norton

Sheila lives near Chelmsford in Essex, and has been writing avidly since childhood. For most of her life she worked as a medical secretary, retiring early to concentrate on her writing, Sheila is the author of 11 contemporary novels.  Part 1 of Sheila’s brand new digital series ‘The Vets at Hope Green’ will be released by Ebury Press on 19 January, followed by the paperback of the complete story on 1 June 2017.  http://www.sheilanorton.com/

 

 

In at the deep end: How a failed swimmer finally overcame her fears

I’ve occasionally been asked, in interviews or on questionnaires, to talk about my proudest achievement. Without wanting to be mawkishly sentimental, my personal response is always ‘my family’ – because, well, obviously bringing up my three daughters was the best (and sometimes the most challenging!) thing I’ve done, and I’m not afraid to say how proud I am of them all. But the interviewers have usually wanted a writing career-based response, and there have been lots of possible answers, from winning two short story awards, to selling my first novel to a publisher, to writing so many of my earlier novels alongside working at a busy full-time job in the NHS. But there’s another answer, that has no connection with writing or even with my family, and it’s this: I’m ridiculously proud of myself for learning to swim!

I was never what you could call an active child. I spent most of my time with my head in a book, or dreaming up stories in my imagination. True, I did at least have to walk everywhere – I didn’t learn to drive until my mid-thirties – and that, together with the lack of junk food available during my post-war childhood, might have kept me from an early obesity-driven grave. I did take up cycling at one point before I passed my driving test, mainly to get to and from the shops more quickly. But I gave up after the massive humiliation of being overtaken on a hill by an eighty-year-old acquaintance, who waved and called out to me as she passed, while I could only manage a wheeze and a puff in response.

School PE lessons were, for me, the devil’s own torture device. You know the stories about the child who nobody wanted to pick for their teams because she was so totally useless at every game? I was that child. I suffered that mortification on a regular basis. I never learned the rules of netball. I hated hockey with a vengeance, scared stiff of being hit by the ball or clouted by someone’s stick. In tennis lessons, I’d actually sit down on the grass court and pick daisies. And in gym sessions, I’d wait for as long as I dared in the line to vault over the bloody horse, letting other girls go past me when the (strident, bossy, scary) gym teacher wasn’t looking, and then run up to the thing and pretend to fall over or hurt my ankle at the last minute. How did anyone actually get over it? I watched all the mega-popular sporty, athletic girls with a strangely detached feeling of awe and wonder. Detached, because I didn’t even want to be like them. I wasn’t interested. It all seemed such a profound waste of time and effort.

Swimming, of course, fell into the same category. School swimming lessons when I was a child consisted of being coached enthusiastically for galas if you were one of the best swimmers, and being pretty much ignored to hang around in the shallow end holding a float and feebly kicking your legs if you weren’t.

Almost 2 years old and in love with the sea

However, when I was eleven, my dad taught me to swim in the sea. The sea and I have had a lifelong love affair. From toddlerhood, I’d always trot into the shallows enthusiastically, despite not having a clue how to survive if a wave knocked me over. I was, of course, too much of a coward to go out of my depth. But on one family holiday, Dad decided to show me how to float, and then how to throw my arms around in a rough approximation of the front crawl. It couldn’t have been pretty – Dad wasn’t a great swimmer himself – but it worked. I was thrilled. I could swim! Well, after a fashion. By the time I was a teenager, I could just about flounder across the width of the shallow end, often putting my feet down halfway. To all intents and purposes, I was still virtually a non-swimmer.

When my three children were born, all within less than four years, I decided to take them all for swimming lessons, and was thrilled when they all learned to swim at a young age. Not only that, but (because they were being taught properly), they were confident in the water, learned their strokes correctly and all became very good swimmers. I was extremely proud, if a tad envious – but it never occurred to me that I could have done the same. I’d long come to terms with my limitations with regard to anything physical!

Sheila’s three daughters all loved the water

And that was pretty much how I remained until a holiday in Australia in 1997. One of our trips was to the Great Barrier Reef. On the boat out to the reef, a marine biologist told us about the amazing sights we’d see by snorkeling in the sea above the reef. I guessed I’d have to miss out on that. But then, she added that if anyone was a nervous swimmer, she could tow them along with a lifebelt and point out the marine life.

‘I’m going to do that!’ I decided, carried away by the moment.

I hadn’t quite thought it through. When it came to being fitted up with my snorkel, mask and fins, I panicked.

‘I’ve never swum with my face in the water before!’ I blurted out to the marine biologist.

I suppose, in my naivety, I’d kind of hoped she’d feel sorry for me, give me some advice, or somehow devise a way I could see the life below the surface without actually getting my head wet. Instead, she gave me a slightly supercilious look and said:

‘So what makes you think you’ll be able to do it now?’

And I reacted in what was, for me, a very uncharacteristic fashion. I sat up straight on the edge of that boat, squared my (shaking) shoulders and retorted:

‘Because I want to!’

The first few minutes were very scary. For a start, I didn’t like not being able to touch anything with my feet. I held onto that lifebelt so tight, my knuckles hurt.

‘Now just rest your face on the surface of the water,’ the (young, fit, sporty) marine biologist instructed me and the other wimps she was towing.

Just like that, ha! But – I did. Surprise, surprise, because of the mask, nothing went up my nose or into my eyes. I could see below the surface! Wow!

‘Just relax and float,’ she went on.

And, yes, I did. I experimented with breathing (having up till then been holding my breath in fear), and it worked. I could do it! Breathe in, breathe out, nothing happened – I didn’t choke, I didn’t sink, I didn’t drown. It was amazing! I saw some fabulous sights during the next half hour – brilliantly coloured coral, huge fish who gazed back at us with disdain, shoals of tiny bright fish who darted backwards and forwards in front of us – but none of it compared with the excitement I felt at the very fact that I’d done it. I didn’t let go of that lifebelt for a single second, of course, but that was beside the point. I’d snorkeled the Great Barrier Reef! Me! It was an experience I’d never forget.

Discovering a new found love of snorkelling

But back home, back in my real life as a wimp, the excitement soon wore off – until one day soon afterwards, my friend Geraldine told me she fancied going to adult swimming lessons.

‘But you’re already a good swimmer!’ I said.

‘No, I’m not. I want to improve my strokes.’

Improve them? I’d just be satisfied with getting some. After a few moments of deep breathing to control my nerves, and before I could change my mind, I said:

‘OK! I’ll join up with you.’

We both started in the beginners’ class. On the first lesson, our instructor asked us to show him what we could do. Geraldine set off powerfully across the pool. What the hell was there to teach her, I wondered? I followed, gasping my way untidily along for a few metres with my head held high. Needless to say I wasn’t expecting applause, but unlike school swimming lessons, there were no scornful titters. The instructor asked me whether I could try putting my face in the water. I shook my head. What, without a snorkel? You must be joking!

‘Just try, for me – duck down very quickly,’ he encouraged me.

Right. I was conscious that everyone else was waiting to get on with the lesson. I ducked my face in and out within a split second, coming up with my hair all over my face, spluttering and rubbing my eyes.

‘Two pieces of advice,’ the instructor said. ‘Tie your hair back. And get some goggles.’

It’s no exaggeration to say those words changed my life. Within weeks, kitted out with my hair band and goggles, I was learning to swim – properly. Within months, I was joining Geraldine in the ‘intermediate’ class (she’d been moved up straight away). Within a year, we were two of the select group of four adults who made up the advanced class. At the age of 49, I could finally say I was a swimmer. I’d learned the correct breathing for front crawl. I’d learned breaststroke, which had always been a complete mystery to me. I’d learned back crawl, and had even had a go at butterfly. I could swim lengths – several lengths – more lengths the longer I learned, the stronger I got. I could pick up a brick off the floor of the pool, jump in at the deep end, and swim wearing pyjamas for survival training. I was finally doing all the things I’d admired my children for doing when they were a fraction of my age.

Despite my excitement, I knew I’d never become a really good swimmer. I’d probably left it too late for that. Sometimes I regret never learning properly when I was young – I missed out on so much enjoyment. But then again, the thrill of having overcome my fears and lack of ability later in life has never worn off. At the peak of my (admittedly still limited) fitness, I undertook to swim a mile for charity. I didn’t find it easy. But every time I felt like giving up, I remembered that scary gym teacher at school, and thought: If only you could see me now.

Nearly twenty years further on, I tire more easily and accept that I have to stop frequently during my thirty lengths, to take a few breaths. Ironically, I find now that I can’t swim without my face in the water – it hurts my neck too much. But yes, I still swim regularly and with asthma and arthritis among other things, I know how good it is for me, and it’s still (apart from walking) the only active pursuit I’m even interested in. I’ve realised it suits me because I’m not at all competitive. I swim alone, the only contest being with the constraints of my own body. When people ask me if it’s boring, just swimming up and down the pool, I reply that it’s my thinking time. Many a plot twist has been devised during a few lengths of crawl!

And of course, my love affair with the sea is still going strong. I might not be so keen these days to fling myself into the freezing waters of the English Channel at all times of year, but give me a warm ocean, a snorkel and the chance to jump off a boat moored in a beautiful blue bay, and I feel as close to paradise as any ex non-swimmer could possibly be.

 

Right Now I’m….

Watching: ‘Game of Thrones’

Reading: ‘The Road to Little Dribbling’ by Bill Bryson

Listening to:   ‘A Head Full of Dreams’ by Coldplay

Pass it on:

Who would you most like to see featured on this blog?

Fenella J Miller @fenellawriter  Prolific and very successful self-published historical novelist .

Emily Yau @EmilyWhyy   My editor at Ebury Books, who also performs in musical theatre.

Jojo Moyes  @jojomoyes  One of my all time favourite novelists

 

Part 1 of Sheila’s new digital series ‘The Vets at Hope Green’ will be released by Ebury Press on 19 January, followed by the paperback of the complete story on 1 June 2017.

 

In Her Words… Losing Finn by Lora Price

Lora is a wife and mummy of four sons.  In 2012 her family were devastated when her third son, Finn was born sleeping.  

Her brave and honest account below was written to promote Baby Loss Awareness Week this week.

 

In Her Words… Losing Finn by Lora Price

My third little boy, Finn, is 4 years old. He would have started school in September, joining in his brother’s morning rituals which are sealed with a kiss goodbye in the school playground. I imagine he would be delighted and excited by the prospect of being a big boy and starting school.  I imagine. I imagine everything about Finn, as he isn’t with me anymore.

The aftermath of losing Finn was deeply wounding. The grief was engulfing and all-encompassing whilst my deep sense of guilt was choking. I lived on the fringes in the early weeks, as babies born sleeping seemed to be one of the great unmentionables.

Lora with Finn

I was angry. Angry at my own body; angry at those people who were still pregnant; angry at those who tried to comfort me with their own sadness of miscarriage (I have had four of those too). Finn was a perfectly formed 5lb 8oz little boy. He may have been stillborn, but he was still born.

Finn is irreplaceable, yet a few months after his passing my arms felt desperately empty and I became pregnant again. Interestingly, I felt more normal when I was, as suddenly friends who had gone quiet were more comfortable speaking to me again. At 34 weeks, our family was blessed with the arrival of our fourth little boy Joshua Finlay Martin, known as Joss. Our tiny miracle perfectly filled our yearning arms and helped us smile again.

With Joss in our lives, I felt strong enough to start the beginning of our new future. Sadly, this was short lived as one week post-birth I learned that my beloved father had, unbeknown to me, started an aggressive battle with cancer. (He had withheld telling me whilst I was pregnant as he didn’t want me worrying). He put up an incredibly strong fight with the bravest of faces, but four months later cancer took my Dad and enveloped me in the tentacles of grief yet again.

This grief was akin to carrying a boulder around with me all day. I struggled under the pressure, my knees buckled and my arms strained to maintain grip. But letting myself go through this grieving process, allowing myself to feel angry, to unapologetically feel like I had been wronged, that I was the victim, that life was unfair, was in hindsight key to starting the healing process.

It takes time to feel human again and I remember feeling a huge sense of pressure to seek professional help. For reasons that I don’t even understand myself, I couldn’t face this. I couldn’t tolerate the thought of exposing or sharing my deepest feelings with someone I didn’t know. I was much more comfortable being the shoulder to cry on, rather than the one doing the crying. Or maybe I just didn’t want them to take the pain away?

Lora’s dad with his grandson Joss

You can’t heal every wound and I believe that is OK. The ache in my heart is important and I don’t ever want it to fully subside. It’s what tells me that I love Finn so deeply, it’s how I take Finn everywhere with me and it’s my barometer which helps me evaluate what is important in everyday life.

However, I am not ashamed to admit that contentment and happiness are a big part of my life again. I spent the early part of this evening with Sonos belting out some big tunes in the kitchen whilst my husband, three other children and I busted some shapes amongst a furore of laughter! However, as I sit here writing this article with a glass of wine on standby, I am joined by tears rolling down my face and a very heavy heart and it got me thinking about how often I cry now. Is it daily? No. Is it weekly? I’m not sure. Is it about Finn or my Dad? I don’t know and really it doesn’t matter because I love and miss them both. But what I do know is that crying feels much easier and more manageable now, as I know that happy times are just around the corner again. I’d actually go further to say that shedding a tear is for me now is a therapeutic exercise. It’s always done privately, in a quiet moment at home or maybe on a contemplative country walk with my faithful four-legged friend, but for me it is like releasing the pressure valve which allows me to be the wife, the mummy and the friend I want to be. Crying (and writing!) are my own personal forms of healing it would seem.

In fact, I jest about writing, but actually in the early months after losing Finn I found myself enslaved to the computer as I completed a piece of writing which captured our two days with him. This documentation of Finn’s time with us proved to be somewhat cathartic. I was conscious that time could possibly erode the details and I was keen to preserve as much of that time as possible. It’s neither a heart-warming or uplifting read, but it is an honest and precious account, you can find it here: Forever My Finlay 

It is clear to me now that I was particularly fortunate to be surrounded by such a strong and patient group of people who gave me the platform to face the future again with renewed strength and hope. However, one of the most painful struggles I faced in the early months was the discomfort that clearly resided in many friends, dare I say some extended family members too. I get it. Giving birth to a baby who isn’t alive is a difficult reality for everyone to face. Many people don’t have previous experience to draw upon when dealing with friends in this situation. What do you say to them? Talking about said baby will only cause further upset surely? So, many simply said very little. At best ‘how are you?’ At worst, nothing. Certainly there was never any mention of his name. I don’t want Finn to become a forgotten member of our family or his name to be a taboo word in my presence. I yearn to hear his name still. Yes, it may bring tears to my eyes, but it also brings music to my ears.

Lora with her boys and husband David

So looking back now, how do I reflect on all this? I do believe I can see the world in many more colours than I did before we had Finn. Having witnessed both the fragility and blessing of life I am more self-aware than I was before, I count my blessings with much more commitment and I look to really enjoy and not second-guess the good times. To get to the place I am in now, I had a choice to make; I could stagnate and let the world move on without me or I could re-join the journey and start moving forwards again. I chose to jump aboard life’s train, in part, because I owe it to my incredible family unit, but also because I am so grateful to be alive. Many people didn’t go to bed last night or didn’t wake up this morning. But I did. And I am grateful.

I am also much more mindful now of how I react to others facing difficult times, whether great or small. I always try to step off the ledge and offer the comfort that I feel I didn’t always receive. To be honest, this has had a varied response, some have closed me down not wishing to go any further, but equally some have welcomed that subliminal nod which allows conversation to unfold.

I don’t profess to have a secret ingredient as to how best to get through times such as these, I think everyone’s road to reach their new normal is totally personal and unique to them. What I would say though is if I can, then you certainly can too. Also, for those readers who do have a friend out there who does need you, then don’t let your social awkwardness stop you from being the friend you want to be or the friend you need to be.

Everyone’s life will undoubtedly have ups and downs. I believe it is critical to appreciate and savour the ups because this creates the reserves of strength that you need to deal with the downs.

Finally, my advice when you are going through your own crisis: listen to advice but don’t allow this well-intentioned counsel to take you in a direction you are uncomfortable with. Trust yourself and you will find the right path back to happiness.

For anyone looking for support following the loss of a baby, the following charities offer excellent advice:

Sands 

Tommys 

Saying Goodbye 

The Mariposa Trust 

Baby Loss Awareness