Briony broke a mirror a little while ago, and it got me thinking on the subject of luck, karma, fortune, etc. “Seven years’ bad luck”, we instinctively said, and then both wondered aloud whether seven years of bad luck could be retrospectively applied so that we had significantly less than seven years’ bad luck left to serve. I try to get a balance in this blog between ‘talking about our journey and experiences’ and ‘talking about the bigger picture’. So back to our journey.
I wrote in ‘Lollipop men are annoying’ about how ‘2015 has to be a better year’ became our mantra as the clock ticked over from 31 Dec to 1 Jan, and our frustrations as (despite the fantastic support of our obstetric consultant and our GP) we didn’t seem to be getting anywhere with our push to be referred for IVF.
IVF on the NHS is a proper postcode lottery in the UK. Now, we should all be incredibly grateful for the NHS and what it provides citizens in our country without batting an eyelid – the NHS is amazing, and as a population we are SO LUCKY to have it.
Break your shoulder, need surgery? Sure come in, we’ll fix it, that’ll be precisely £0.00 sir.
Diagnosed diabetic and need insulin for the rest of your life madam? No problem at all, that’ll be £0.00. Forever.
Having a baby? We’ll look after you for your entire pregnancy and through the birth, absolutely no worries. Cost to you: £0.00.
It really is a wonderful institution, and we’d all be far worse off without it and the wonderful people within it. We’d discovered how lucky we were with the care we were given when Henry died without even the suggestion of any kind of bill or invoice, and we were soon to discover it again.
If Henry had been stillborn in the USA, our bill might have looked something like this astonishing actual bill for a friend’s stillbirth in the US – luckily she had a good insurance plan…
One of the frustrating things with the NHS is this perception of a postcode lottery though – that you can access some treatments for free in one part of the country, and not another, depending exclusively on your address. In Harrogate, the criteria are quite strict, the mum must be below the age of 42 (due to clinical evidence that suggests that older women are less likely to conceive successfully through IVF) and you have to have been attempting to conceive unsuccessfully for over two years (because if you can get pregnant naturally, you don’t need IVF).
So we were ruled out of consideration based on Briony’s age, and based on the fact that it had been less than a year since Henry had died. In a vicious, if unintended, twist of the knife, your child being stillborn at full term rules you out of IVF as it demonstrates your ability to conceive naturally, without the joy of bringing that child home. The further irony that Briony was below the age of 42 when Henry died was not lost on us.
There are some who argue that IVF is more of a ‘lifestyle’ treatment rather than a medical necessity, and as such it shouldn’t be provided on the NHS at all, an argument which I can understand to some extent even if I don’t agree with it. Similarly, there’s an inherent (if cold-hearted) logic in restricting a treatment to those who are more likely to successfully benefit from it, as the pot of money available is not bottomless – news stories on a similar vein surrounding the restriction of things like hip replacements for people deemed overweight (the implant is likely to fail quicker and produce a poorer outcome for the patient) or having one’s tonsils out crop up every now and again. Tough decisions on health spending have to be made every day in a system that’s free at the point of use, but damn if it’s not hard to swallow if you fall just the wrong side of an arbitrary line.
Now, like many things in life, there was an ‘exceptional circumstances’ clause and a right to appeal if medical professionals felt a family’s particular case warranted special consideration outside the criteria. Both our GP and our obstetric consultant wrote to the clinical commissioning group on our behalf, but both also cautioned us that they’d never known the ‘exceptional circumstances’ clause to ever actually be invoked, so it was highly unlikely we’d be successful – and so it proved.
The letters came back – sorry for your loss (or in one case “we are sympathetic to your circumstances” – wow, thanks for that), but your child dying is simply not exceptional enough. An IVF consultant said to us later (and in large part changed my perspective on this) “if you need our help to get pregnant, then you’re automatically an exceptional case, and that’s why that clause virtually never gets applied”.
I haven’t written about secondary infertility following loss before, and I have friends who’ve been absolutely devastated by that emotional challenge. It hadn’t really crossed our minds at that time that this is what we were facing. However, as the “NO FUNDING FOR YOU” letters dropped through our letter box, we began to face up to the reality that self-funded IVF was going to be our only option. So we requested a referral and were waiting for an initial appointment.
Then, creeping up on us at first before hitting us like an emotional tsunami, our lives and the landscape of our grief, our attempts to conceive (and everything else tied up within it) changed irrevocably once more in February 2015 when Briony found a lump.
It didn’t phase her at first, because it was going to be nothing. She’d found lumps before. Apparently it’s not uncommon if you have big boobs (I have no idea about these things). At first she didn’t even mention it to me. An old friend of mine had just passed away from breast cancer in her early thirties, and Briony, ever selfless as she is, didn’t mention it to me because she knew I’d worry – and that my fears would be heightened by my friend’s tragic passing. Sensibly though, she decided in the end that she did have to mention it to me just in case I opened the appointment letter and found out that way instead! She’d been to the GP without telling me about it and been referred to see the specialist. So off we went to see Mr. Ray, the breast consultant at Harrogate Hospital, who’s an absolutely LOVELY man, a true gent, on a Friday in mid-February. Examinations, mammogram, ultrasound, biopsy of the lump, see you in a week.
Still Briony was sure it would be nothing (as she had had biopsies before when she had found lumps), and back we went to the follow-up the following Friday, and we were shown into the consulting room, where we waited. After what seemed like an age, Mr. Ray came in with a different nurse, and instantly I knew. The nurse had a different colour uniform on (a black one), a Macmillan lanyard, and a clipboard.
Nurses don’t bring clipboards in if everything’s rosy. Shit.
SHIT SHIT SHIT SHIT SHIT.
One of the downsides of spending so much time working in hospitals, it seemed, was that you get an inherent sixth sense about stuff. Briony didn’t pick up on it even though I remember gripping her hand just a little tighter.
He shuffled his papers around and then gently, kindly, if slightly apologetically, told us that they’d found cancer in Briony’s breast. Briony did what she always does – she took a moment, composed herself, and asked “so what now?” It never crossed her mind for a second that death was on the table. My mind, on the contrary, could only consider that possibility.
Mr. Ray explained that the tumour was about 5cm x 5cm, around the size of a golf ball, and was earmarked as Stage 3. Stage 3 is BAD.
There are four stages. This is how Macmillan describe them.
This is how I describe them (simplified and totally non-clinical).
Stage 1: yeah we are pretty confident we can sort this.
Stage 2: this should be okay.
Stage 3: right, we’re going to do a SHIT-TON of tests, this is NOT GOOD.
Stage 4: “Start setting your affairs in order”, as my incredible and inspirational friend Heidi Loughlin, Ally’s mum, described it when she spoke at our charity’s conference in York in February 2018 (want to read another amazing, funny, insightful and informative blog? Head for Heidi’s ‘Storm in a Tit Cup’).
So stage 3 isn’t as bad as it gets, but it is still BAD. Of course, I read up on it later, because I like data and information, and scared myself shitless all over again.
Mr. Ray said the next step was a lymph node biopsy because they’d looked inflamed on her ultrasound. If the cancer gets into your lymph nodes, that’s extra shit, because they act as a sort of gateway to the rest of your body. So determining this aspect is pretty essential to determining the treatment plan. So he and the nurse went out of the room to sort out some paperwork for a referral for the lymph node biopsy, and secretly I suspect just to give us a minute.
As the door closed behind them, in an instant, the strongest, most resilient, toughest and most stoical person I’ve ever met crumbled and broke. “This year was meant to be better”. I pulled her into me and held her as tightly as I’ve ever held her.
That biopsy happened immediately after the diagnosis appointment, and we were booked in to come back on the Tuesday to get the results of it and discuss the plan of action – an entire weekend for me to read in on oncology – give me orthopaedics or maternity any day, oncology was a whole new ball game for me. I did what I always seem to do when our world falls apart on medical grounds: I rang Henry’s Uncle Robin.
So on the Tuesday, a ray of hope. The cancer was NOT in Briony’s lymph nodes. This was GOOD NEWS. But then, like Chris Tarrant whipping a cheque for £125,000 out from under your nose with a “But we don’t want to give you THAT”, Mr. Ray said that because of the location of the tumour being so close to the lymph nodes, he couldn’t see how it WASN’T in the lymph nodes.
So he wanted to take Briony to theatre for a sentinel lymph node biopsy with radioactive dyes and other clever stuff to try and get an even-more-accurate picture. If it was in the lymph nodes then it would likely be surgery – chemotherapy – radiotherapy. If it wasn’t, then it would likely be chemotherapy – surgery – radiotherapy.
“But wait,” we said, “we’re waiting on a referral for IVF. What does this mean for that? We’ve been waiting ages.” Well, you need chemo so the IVF needs to be done before that can start…
Turns out, if you get diagnosed with breast cancer, they can pick up a Batphone to the IVF clinic and they’ll call you and fit you in literally the very next day. I told Bri that this seemed a pretty excessive way to get IVF on the NHS but hey, you have to do what you have to do…
Wednesday, 0830 hrs, here we were, at the IVF clinic at Seacroft Hospital in Leeds which we’d been waiting months to get to. This wasn’t how either of us ever envisaged our IVF journey starting, but start it had. By the Sunday, just like that, Briony had started IVF – and no-one had mentioned payment at any point.
Just over a week later, Briony had the sentinel lymph node biopsy – also clear, YES! – and two days later, eight eggs harvested, three embryos frozen. Well, that was quick! Except now it would be on hold for who-knows-how-long. Three little embryos in a freezer in a hospital 20 miles up the road, a vital glimmer of hope in an uncertain future, something to focus on through everything that was facing us.
So by early April, we’d gone from sitting and waiting for a referral for IVF being the only thing on our horizon (apart from our grief, goodness me, we were still processing that – and it was about at that time that my mother came out with the immortal line “sometimes Christopher, you need to get over it and move on” that I spoke about in “Out of the Mouths of Babes”), to Stage 3 breast cancer (BAD), not in your lymph nodes (GOOD), probably in your lymph nodes anyway though (BAD), to rushing through IVF (GOOD but BAD), to not in your lymph nodes after all (GOOD), to seeing the oncologist (GOOD, we liked him), to starting chemotherapy (BAD because it’s horrific, but GOOD because it stops you dying), all in a little over a month.
Well, if the rollercoaster of baby loss wasn’t full of enough ups and downs, this was like going from the spinning tea cups ride at the fair you take small kids on (well, if you have small kids you do, I imagine), through the waltzers (I fucking hate waltzers), to sitting on the front row of the Nemesis or Oblivion rides at Alton Towers.
Where does the concept of “luck” come into all this? Well I think it gets filed with some of the helpful “at least” type comments. How much bad “luck” can one person or one couple get? But then, it’s all relative isn’t it, because we’re “lucky” to have tackled stillbirth and breast cancer within 9 months of each other in the developed world, in a country with a healthcare system that’s free at the point of use and doesn’t bat an eyelid, but just gets on and treats you. Either one of those things in the Third World, and the chances are that Briony may very well no longer be here. But she is. That’s lucky. There’s ALWAYS someone worse off.
“You make your own luck” or “the harder you work, the luckier you get”, you often hear said, usually relating to success in business or something like that. I don’t think that’s true. You don’t make your own luck, you make your own success. You don’t get luckier the harder you work, you get more successful. That’s not the same. I worked incredibly hard (in large part as a distraction from my grief) in 2014, and was very successful at work as a result. But I wasn’t luckier. My son still died. My wife still got breast cancer. I didn’t work my way to being born in Britain and our being able to access world-class healthcare for free, I didn’t MAKE that luck.
The truth is, some stuff just happens, and it’s shit but it’s completely outside of your control. What IS in your control is how you react, how you deal with adversity. As Heidi said in her speech at our conference, which you can watch here (ensure you have tissues and wine to hand) “That’s what you’ve got to remember – when you go, 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”.
People often expressed amazement at how well Briony “coped” with her breast cancer battle, and her answer was always the same – “it’s not the worst thing that’s ever happened to me”. I’ll come onto the topic of how different people’s experiences frame and inform their perspective in another blog soon.
“2015 has to be a better year”?
No such luck…