When things CAN get any worse…

In my last post about our journey, ‘Briony broke a mirror’, I talked about the abortive start of our IVF journey, our struggles with NHS funding criteria, and the remarkable revelation of the IVF ‘free pass’ that we discovered when Briony was diagnosed with Stage 3 breast cancer in February 2015, nine months after Henry was stillborn.

This sent us off in a very different direction. From the point at which we’d said goodbye to Henry, our journey had been a mixture of dealing with our grief over his death and trying to look forward which included trying to conceive a little brother or sister for him. Briony’s diagnosis threw a spanner into the works on both counts, and our focus became almost exclusively on doing everything we could to ensure that she survived.

I think the three most challenging things in my life, in this order, have been:

  1. Henry dying.
  2. Watching Briony in labour come far too close to joining him for comfort.
  3. Hearing the diagnosis of Briony’s breast cancer and facing up to the possibility, again, that I might lose her too.

And through all of this, Briony remained utterly stoical, the single strongest person I’ve ever met. She’s overcome ongoing ankle trauma, she’s overcome a stillbirth, she’d go on to beat breast cancer, she’d handle an IVF battle, she constantly copes being married to me, all with a smile and an entirely unflappable character. She’s made of titanium (literally in some parts), completely unbreakable.

But from February 2015, our focus had to change. It had to move entirely onto Briony’s cancer treatment. Notwithstanding the enormous mental strain of a battle with breast cancer in its own right, this was hugely challenging. We decided very soon after Henry died that we wanted to try again – like many aspects of this journey for bereaved parents, there’s no right or wrong answer. We looked and tried all sorts of ovulation plans, vitamin supplements, the whole nine yards. Nothing had worked. And then, suddenly, this massive hand reached down and pressed the biggest pause button on the whole thing. That meant we had no idea whether we’d ever get the chance to restart that journey.

Obviously though, the most important thing was making sure we did everything possible to give Briony the best chance of surviving this latest battle. After the fast-tracked IVF – which took us through to embryos being frozen, three little pieces of hope to give us something to aim for, something to cling on to – came the chemotherapy.

Chemotherapy is brutal, but Briony coped with it admirably of course – if you’ve read all my blogs up to this point, this will come as no surprise to you. They gave Briony injections called Prostap, which were designed to trick her body into thinking she’d gone through a temporary menopause. This was because chemotherapy targets actively dividing cells (which is why your hair falls out). So if you can ‘trick’ the drugs into thinking that your ovaries aren’t working, there’s a chance they’ll be ignored by the drugs and with that, give your ovaries a chance of still working once the treatment is over. Unless you’re us, of course – we’re not that lucky.

Prostap.JPG

Chemotherapy wipes people out, totally drains them. Briony’s chemotherapy sessions used to take place on a Thursday. She’d usually be fine for the first 24 hours and then it would hit her. She’d take the Friday and Monday off work and go back on the Tuesday. Now that’s pretty good going by most people’s standards – apart from her boss at the time, who couldn’t fathom why she didn’t appreciate being called “Sicknote” whilst being treated for breast cancer – turns out baby loss doesn’t have a monopoly on people saying stupid, crass and insensitive things (disclaimer: I didn’t really think it did!).

Briony had six sessions of chemotherapy, three weeks apart. Except three of the six sessions were delayed because her blood counts hadn’t recovered sufficiently from the previous round. So that took us through to her final chemo session on August 13th, 2015.

She’d had a “complete response” to the chemo, which was great. It made the surgery difficult though, as they weren’t clear exactly where the tumour had been, and consequently weren’t sure exactly where any residual cancer cells might be. So the surgery wasn’t very useful and we needed to seek a second opinion as to whether they should do another operation having operated in the wrong place initially (Henry’s Uncle Robin helping out with recommendations again!).

And then radiotherapy. If anything I thought the radiotherapy seemed even more brutal as it’s daily, rather than every few weeks. So no time for recovery. Just BAM…BAM…BAM.

We were (Briony was) lucky I guess, from the moment we heard the words “complete response to the chemotherapy”, her odds of success improved dramatically. Luck, be it in baby loss or cancer terms, is a strange concept. Most people I’ve met in either of those fields often shrug their shoulders and say “well, someone has it worse than me”. It reminds me of the remarkable poem ‘Complainers’ by Rudy Francisco – I’ve quoted it before – which I think captures so much of the resilience people always seem to show when faced with either baby loss or cancer. You can watch him performing the full poem here, but here’s the quote I think brings it home:

“May 26th 2003 Aron Ralston was hiking, a boulder fell on his right hand. He waited four days, then amputated his arm with a pocket knife. On New Year’s Eve, a woman was bungee jumping in Zimbabwe. The cord broke, she then fell into a river and had to swim back to land in crocodile infested waters with a broken collarbone. Claire Champlin was smashed in the face by a five pound watermelon being propelled by a slingshot. Matthew Brobst was hit by a javelin. David Striegl was punched in the mouth by a kangaroo.

The most amazing part of these stories is when asked about the experience they all smiled, shrugged, and said “I guess things could have been worse.”

Muscle is created by repeatedly lifting things that have been designed to weigh us down. So when your shoulders feel heavy, stand up straight lift your chin – hell, call it exercise…when the world crumbles around you, you have to look at the wreckage and then build a new one out of the pieces that are still here.

Remember, you are still here.

The human heart beats approximately four thousand times per hour.

Each pulse, each throb, each palpitation, is a trophy engraved with the words “You are still alive”.

You are still alive.

Act like it.”

You see, the thing is, we don’t have any control over some of the things that life throws at us. What we CAN control is how we respond to them. Which brings me to the other purpose of this particular blog post. I’ve talked often, and will continue to talk often, about how amazing my wife is. Because she is.

I’m not going to blog in any more detail about Briony’s cancer journey, because frankly it sort of swallowed me up and swept me along a bit, I’ll just say that battling cancer and its treatment pathway is exhausting, emotionally draining, and utterly brutal. But this segue from baby loss to cancer has brought me into contact with some other amazing people and, in particular, one amazing organisation, that I want to mention, and that’ll hopefully steer people to far better information about this battle than I could ever hope to provide in my blogs.

The first person who bridges these two different aspects of our story is my great friend (who I’ve talked about before in these pages) Heidi Loughlin (click here for her blog – find a blog about cancer and the loss of a child that starts “Welcome to Cancer-land, like Disneyland, only more deaths and you know you’re in for a powerful read).

Heidi was diagnosed with stage 4 Inflammatory Breast Cancer (which is pretty much as bad as breast cancer can get) when she was 12 weeks pregnant with her daughter, and delayed her treatment to allow time for Ally to arrive earth side safely. Ally was delivered at 28 weeks’ gestation and was doing amazingly until she contracted an infection from another baby in the NICU aged 5 days old, from which she would never recover. Heidi was then given a terminal cancer diagnosis.

Now either one of these two things would be enough to absolutely floor any normal human being. But baby loss and cancer have something in common, they are experiences that, through their immense pressure, form some of the strongest, most incredible people.

Diamonds under pressure

I’m privileged to know many people who deserve that title now, but (apart from Briony) Heidi is the single most remarkable person I’ve ever met. I always hesitate to use the word “inspirational”, because any bereaved parent who manages to get out of bed on a morning and put one foot in front of the other is inspirational, but there’s a reason why I nominated Heidi for Inspirational Mother at the 2017 Butterfly Awards – and there’s a reason why she won.

Heidi was the final speaker at our charity conference in York back in February, and she managed to send everyone away with a spring in their step (no mean feat after eight hours of conference about dead babies) with her remarkable combination of honesty, humour, swear words, and a call to arms. She sent hundreds of student midwives away into the cold February evening with the words:

“You could sell out and go and work for some multi-billion pound company, or you could do something to help somebody else. And you’ve got such a role, where you’re dealing with people who are going through a loss, you will make such an impact, whether it be negative or positive, but you are in control of that. So that’s what you’ve got to remember, when you go away, what would you like people to remember you for – being negative or being positive? So just remember that you are in control of what you leave behind.”

If you want to watch her full presentation, you can find it here.

Also at our York conference was the next person I want to talk about in this particular blog post. Pete Wallroth is the founder of the incredible charity Mummy’s Star.

Mummy's star.JPG
http://www.mummysstar.org

Mummy’s Star was set up in 2013 following the death of Pete’s wife Mair. Mair had found a lump when 22 weeks pregnant in 2012, which was confirmed to be cancerous. Pete and Mair’s son Merlin was born healthy in September 2012, and her prognosis was good. But in November, she was admitted to hospital and it was discovered that her cancer had spread to her brain and was untreatable. She passed away, aged just 41, on 6th December 2012, when Merlin was just over two months old, and his sister Martha was just three.

Pete founded Mummy’s Star to support women (and their families) who are diagnosed with cancer during pregnancy or within a year of giving birth. This is the only charity dedicated to supporting these women and families. The numbers involved are approximately 1 in 1000 pregnant women, which is between 600 and 800 women and families a year in the UK. This is the ultimate double whammy – many women are faced with the agonising decision to terminate in order to have their own treatment, or take the decision Heidi took to delay their treatment. So it often involves a range of connections to the baby loss community.

It’s about as hard a decision as anyone can face – which is why we called Heidi’s presentation in York “Impossible decisions – damned if you do, damned if you don’t”. When I spoke to one of the other central figures at Mummy’s Star in 2016, they said they didn’t know of anyone who’d faced this double whammy in the way Briony had – a stillbirth FIRST and then breast cancer nine months later.

I first met Heidi when I spoke at the Mummy’s Star conference at the University of Salford. I was speaking about baby loss and cancer. Heidi came and sat in my presentation. She didn’t just sit at the back quietly and take it in. She sat front and centre. She sat right in the firing line while I talked emotively about our journey, with all its mirrors and parallels to her own. It was typical of her, but I realised when our eyes met, about half way through my talk, that she was no ordinary attendee. You see, bereaved parents can recognise each other just with a look. As soon as I looked her in the eyes, I knew we were together on this journey. It took everything I have to keep my presentation going to the end, but in the aftermath, we’ve become great friends. There’s an inner circle of people who I confide anything in – prior to Henry’s death, this was a combination of uni mates, team mates, work colleagues. Since Henry’s death, it’s almost exclusively made up of fellow bereaved parents, because, in many ways, they’re the only people now who’ll ever truly get me.

Two things from the last paragraph connect this to the last person I want to talk about today – Salford and my uni mates.

Pendle CollegeMy friend Steve is an old mate from university. We were both in Pendle College, which any honest University of Lancaster graduate will tell you is by far the finest of all the Lancaster colleges.

His wife Rachael is a news broadcaster for BBC Radio Five Live – as many of you know, BBC radio is now based in Salford (look, I didn’t say some of the segues wouldn’t be shoehorned in!).

Actually, three things connect that paragraph to Rachael. The third is breast cancer, for her shortly after a year after their gorgeous son Freddie was born.

Like Briony, she’s stared down the barrel of secondary infertility following cancer treatment.

Big C Little Me.JPG

Like Heidi, she has Stage 4 breast cancer.

And, like Briony AND Heidi, she’s absolutely fucking incredible.

Since receiving her breast cancer diagnosis, she’s set up a brilliant blog – https://www.bigclittleme.co.uk/, she’s got a really powerful Instagram – @bigclittleme, and has more recently done an incredible job of setting up a chart-topping podcast about cancer called You, Me and the Big C. They even got JONATHAN BLOODY AGNEW on! Cricket fans amongst you will appreciate this enormously. The rest of you may simply look blankly at your device screens.

So I know this blog isn’t full-on baby loss like my normal blogs. Yet there’s a clear parallel between all the people I’ve talked about in this blog – Briony, Heidi, Pete (and Mair), and Rachael (and Steve).

They all sit in slightly different places on this really weird baby loss/cancer spectrum. But they’re all living proof that strength manifests itself in different ways. They’re all living proof that it’s intrinsic to human nature to SURVIVE, even when you feel like you can’t go on. And they’re all living proof of two things I quoted you all above:

“When the world crumbles around you, you have to look at the wreckage and then build a new one out of the pieces that are still here. Remember, you are still here. The human heart beats approximately four thousand times per hour. Each pulse, each throb, each palpitation, is a trophy engraved with the words “You are still alive”…You are still alive…Act like it.”

Heidi what you leave behind

And they’re all absolutely incredible and inspirational. They’re all diamonds.

No pressure no diamonds

Remember – no pressure, no diamonds.

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