On TV and in films, it is always always always the person who wants to have children most who cannot, by the hand of some kind of medically-based cruel irony that the universe chooses to strike people down with. Need I remind anyone of the terrible few episodes of Friends in which baby-brained Monica finds out she is infertile? Or when Greys Anatomy’s Meredith finally overcomes her commitment issues to settle down with Derek, only to be told she has a “hostile uterus”? I was inconsolable just watching it unfold.
I want to take a moment to be a little smug here: I had always worried about my fertility. I’d googled charts to examine the optimum age for a woman to conceive, analysed how that would fit in with my life plan (just FYI: it doesn’t, I have learnt that optimum age is 20-25, not a decade later. Sorry, ambitious women out there), and repeated statistics to certain friends, all who had laughed at me. Decline in fertility is a serious matter, I did not want to get to my thirties and find I’d left it too late and then have to go through fertility treatment later in life (we are currently en route to cruel irony at this point).
However, my friends did not feel the same, I was dismissed as having silly, irrelevant worries, of course I’d be able to have a baby. After getting over the initial shock of being told I wouldn’t be able to, I couldn’t help feeling narcissistically smug over the fact that I was right. It’s always the people who want babies most that can’t have them. I don’t live and breathe babies now, but I’ve always been pretty good with them, despite a short temper, and anyone who knows me will know how firmly they are cemented in my life agenda.
No one knows how they’ll react to being told they’re en route to cancer-ville (or, at the very least, requiring extensive treatment for a similar disease). I, a self-confessed drama queen, would imagine I’d have a little teary tantrum and why-God-why moment, when in reality it was completely different. My parents, despite having Google-diagnosed me a few weeks earlier, started to well up at the confirmation, whereas I just sat calmly, possibly looking a little like an emotionally-inept psychopath as I nodded along to the details. Perhaps I was feeling a little abashed at dismissing my Mum’s fears that this was something serious.
The real truth-bomb was dropped a minute or so later. Having related the Chronic Blood Disease and Possible Progression to AML (Acute Myeloid Leukaemia) part, my doctor hesitated.
“It is always difficult with young women being diagnosed with these kind of diseases as, of course, they often want to have a family in the future.”
Drama Queen kicks in.
Emergency “why-God-why” moment. “NO!” I tantrummed, going embarrassingly red with frustration and anger at life. My poor doctor. What a terrible job to have to tell anyone this kind of information, regardless of their immediate reaction. Thank you, NHS, for managing to find such calm, understanding and patient individuals to bestow this kind of news upon sheltered girls like myself.
I immediately assumed the worst, because that’s what Drama Queens do by default, and proceeded to imagine my childless life with many substitute cats (I don’t even like cats), and if I’d just let the poor consultant get a word in edgeways of my tears, I would’ve learnt faster that he wasn’t saying I was doomed forever, he was trying to tell me that currently, I was probably still fertile. It was just that in the future, after treatment, I would not be. Chemotherapy significantly reduces, but doesn’t destroy, your chances of getting pregnant, but a bone marrow transplant does. Essentially, in the future I had no chance, but the time I had now was for the taking.
So, I was put in touch with the Oxford Fertility Unit, a big scary glass building with Institute of Reproductive Sciences on the front, and was told I could begin fertility treatment within the next fortnight. Big day.
I recently read Lymphoma sufferer John Underwood’s hilarious post about the mortifying and humiliating experience of visiting a fertility clinic and leaving behind a “contribution” to your potential future. As grim an experience as it sounds, I have far less sympathy for men where such matters are concerned. Their future can be protected with a couple of scrawls on some paperwork and a matter of minutes in a private room. Signed and sealed. Fertility treatment for women, for want of a better description, sucks.
I’ll try not to go too much into detail here, but you know what I’m like. Firstly, I spent enough time over the next few weeks sitting in the clinic’s waiting room, where I realised that the canvas pictures of blossoms blowing in the wind were interestingly designed to look like sperm and fertilised eggs. Either this or my overactive imagination was going a little mad after staring at my blurry ovaries so much on a screen. Silver lining: the waiting room had free tea and coffee and plenty of couples to people watch, couples who I’m sure examined me curiously, as the only young, only single, and only poorly dressed person in there, giving off a not-sure-if-I-really-belong-here-vibe.
I had to take a huge stack of paperwork home to read, all designed for couples planning on having kids together. I had no husband to sign the paperwork with me, no clue as to why this was all happening so fast, and no idea what I was doing. The paperwork asked questions such as what my intentions with the resulting child was (I don’t know, raise it? Did they want a list of schools, names, approved baby clothes shops?). By the time I’d signed all the relevant pieces, and talked it all through with the doctors, my childhood fantasies of revealing that I was pregnant to my future husband by giving him a “World’s Best Dad” t-shirt were long gone. If nothing, at least this experience has motivated me to work hard with my degree and be successful. I’m going to bloody well need to with the future cost of IVF looming over me.
On that note, I learnt that fertility treatment is not automatically funded for such patients by the NHS. I’ve had pretty mixed reactions from friends and family to whom I’ve told this, and while, yes, it is a little controversial (I didn’t choose the MDS, the MDS chose me), let’s be honest, the NHS has one hell of a load of other stuff to pay for. The good news is that people in my position are allowed to submit a request for funding, and the kind people at the clinic got in touch with the NHS, who decided I was eligible for an egg collection on them, along with my storage fees paid for that pesky little freezer I’ll need for quite a few years. Celebratory drinks on me.
Anyway, onto the treatment. I was prescribed varying doses of hormone drugs that had to be injected at the same time every day, twice a day, to stimulate my ovaries into producing enough eggs for what I learned was called an “egg harvest”. Charming. One of these was a simple EpiPen design, the other was a more complicated syringe dosage that had to be mixed up and injected more precisely. Both in the stomach, yum.
Over the next seventeen days, I was injected in quite the exciting variety of places: in the middle of a warehouse, on a bench out the back of my workplace, on a campsite by candlelight, in a car in the middle of a field, but mostly every morn and eve on my kitchen sofa, whimpering at the thought of another burst capillary caused by that dreaded needle in my stomach.
I have enormous respect for all the people out there with chronic illnesses who have to inject themselves. It’s a huge lifestyle change and personally, I didn’t have the stomach (mentally and, as all my bruises proved, physically) for it. Several friends had to do it for me (I owe Claire, Roberta and Joy a hell of a lot of gratitude for putting up with my whining and fidgeting), but mostly by our friend Lesley, who tirelessly visited our house and watched me drag myself out of bed and sit, silently fuming, for my morning injection. Thank you a million times over.
These injections were accompanied by three visits a week to the clinic, where I had ultrasound scans to check on the progress of my teeny little growing eggs.
They had to up the doses of the hormones to make them grow a little more, but the kind nurses soothed me through this change, and before I knew it, it was harvest time.
What had been most bizarre throughout this process was the fact that my blood cell counts were skyrocketing. For the first time in over a month, they were almost back within normal limits. Was I improving? Was there any need for all this treatment at all?
Unfortunately, on harvest day, an 8am blood test at the hospital confirmed that no, a miracle had not occurred. Instead, the hormones had stimulated my bone marrow as well as my ovaries, encouraging them to churn out more normal cells. As disheartening as this was (no new magical cure for MDS had been discovered), it could at least inspire a new line of research into treatments for blood diseases, even just as a temporary fix, which is pretty exciting.
And a temporary fix it was. Having been off the hormones for just 24 hours, my bloods had already plummeted down again. Remember those little platelet cells? The ones that clot up your blood to stop you bleeding out? Pretty vital during the operation I was about to have. Not to go all medical on you, but a normal platelet count for a young adult woman is 150. Mine was sitting at a meek little 39. Far from ideal.
Two units of platelets later, and time was not on our side. My harvest was at 11.30, and I was advised to get there an hour before. At 11.20, I was unplugged from the wire dripping those life-saving cells into my arm, and hurtled into the car and through Monday morning traffic to the clinic. I still had a needle in my arm at this point, as to save time (and my veins), the nurses had kindly left a cannula in my arm so that the anaesthetist didn’t have to bother putting a new one in. Straight-armed and out of breath, I rushed straight through the waiting room and into one of those awful backless gowns (straightened arm making my life even more difficult), before one of the doctors came into my room to inform me that Dr. Child would be performing my operation.
I know, I know, the irony of this was not lost on me either. ‘How much more opportunities for dark humour could this fortnight hold?’ I began to wonder, as I was first disgruntled that a man would be performing such an awkward operation in the first place, and, to add insult to injury, his name was the very essence of the reason I was here.
So into a small, dingy operation room I was wheeled, with the resigned feeling that at least things couldn’t get any worse.
Until, at least, the anaesthetist realised that the cannula I had was completely different to those he used, and therefore pointless. Out came one needle, and in went another, whilst my feet were in stirrups, the kind I’d only seen on One Born Every Minute, and I felt like a truly special case in a room of doctors standing over me. Their faces were the last thing I saw as I drifted off to the welcome relief, the sweet, sweet nectar of the anaesthetic.
I woke up what felt like hours later, was wheeled back into my little recovery room, where my ever-faithful Dad was waiting with a bounty of M&S sandwiches to reward my temporarily starved stomach. Instead of eating, I chose (not really) to be violently sick, and then was aware of an extremely sharp ache in my lower stomach. After carting away my vomit, a nurse administered paracetamol through the cannula, and the pain faded enough to eat half a sandwich, before I felt well enough to get up and show that I could walk around and dress myself.
Now for the good news: the average number of viable eggs collected on such a harvest is seven. They managed to get twenty six of mine. Twenty six whole eggs. Even with the 50-60% success rate of IVF that was still around fifteen potential children I had coming my way. Dreamy.
But it’s not over yet, friends. Home was to become a distant memory at this point, as we drove back to the hospital. My doctors wanted me to stay just one night on the haematology ward, to double check that everything was okay within the confines of such a vastly-fluctuating body as mine.
I sat and waited for a bed for a few hours, and was perfectly happy snacking and reading my book before I went up to the ward and was greeted by a truly wonderful sight: a one-bed room.
My Mum and sister Izzy visited me, bringing tomato soup and fruit. We were sitting together, and Izzy was gambolling all over my ensuite, making me laugh, and that’s when the tidal wave hit. Metaphorically, of course.
This whole new wave of pain just suddenly immobilised me, I couldn’t believe how my stomach so quickly decided it wasn’t getting enough attention and struck back. My abdomen was suddenly tense, I was in pain, sitting or lying down, and before I knew it, the tomato soup I’d eaten decided to buy a return ticket and reappear back into the bowl. Tasty.
Now let us please imagine, or reflect, on what it’s like to be six months pregnant. My stomach was swollen, rigid, it hurt to lie on my side so I just had to lie on my back, whilst whimpering at how unfair my life was. Furthermore, let’s continue to imagine an extreme version of morning sickness. I’d say it would more accurately be called morning-noon-night sickness, however.
The next day, I was moved into a shared room and spent three days sitting up as straight as I could, nursing my poor pregnant stomach, unable to lie down or hunch over as it was so sore I would never be able to get back up again (more NHS praise is due for the electronic beds, which Izzy loved using to help me sit up and down).
Every mealtime, I would attempt a little bread, or cereal, or fruit, and every time would be forced to waddle to our shared bathroom and be violently sick, possibly violently enough for half of the haematology ward to hear. Anti-sickness tablets usually work wonders, I’m told, but my body decided to be difficult and bring them back up too.
You may be wondering how all of this came out of a relatively simple and common procedure. What had happened was the result of Ovarian Hyperstimulation Syndrome (OHSS). As delicious as it sounds, it simply means my ovaries got a little over-excited with all the hormone drugs they’d needed, had a little party somewhere near my uterus, and puffed themselves up with pride. When the eggs had been drawn out of them, imagine that they essentially deflated, because they just got that many eggs (smug face) and fluid from around my body rushed to my stomach to fill the space left behind, hence my sudden faux-pregnancy.
The results were as follows: dehydration, as much of the fluid in my body had now settled in my stomach and apparently signed some kind of temporary rent agreement there, a high pulse as my heart worked harder to disperse some of the fluid, vomiting as it compressed my stomach and everything in it, major swelling which caused me to look as if I was about to go into labour just walking to the bathroom, and, my own symptom: moaning, a lot.
Thrilled to have another cannula in, of course
It hurt, okay? OHSS is often relatively simple and should die down in a couple of days, but after two units of blood given in the middle of the night, many visitors, excruciating blood thinning injections, countless bottles of blood extracted, a lot of vomiting and several check-ups a day, haematology confirmed that there was nothing more they could do for me, and I was transferred to the gynaecology ward late on Thursday night.
Back into a private room I was wheeled, but imagine something a little like the schu that Piper experiences in Orange is The New Black. I wish I was joking. A small, bare cell, with a window that looked out onto an empty indoor corridor, an utterly charming feat of architecture.
When I arrived I was told that the gynae registrar was currently upstairs in the middle of helping someone who was really in labour, but when he did come to see me, he agreed that there wasn’t a lot I could do other than keep hydrated and try to eat as normally as possible. Draining the fluid could just cause it to flood straight back in again, so I had to wait for my body to absorb it over time.
A consultant came around the next day to examine me and told me that, if I was eating, sleeping, and using the toilet normally then I could finally be discharged today. Having been told this every day, I didn’t hold out much hope, but after agreeing that I was fit and ready to go home, the paperwork was done.
It was a mark of how desperate I was to be released from my cell that I agreed that why yes, of course I was eating well, and yes, hadn’t been sick all day. Being home did help a lot, however. I lay on the sofa for quite a few days, and had to hobble back to gynae with fluid trapped around my lung, but two weeks after my harvest I was back to normal. At long last I could return to my I’m-ill-so-it’s-allowed diet of pizza and chocolate.
Yes, I will soon be as dry and barren as the Sahara and yes, it sucks, but I’ve come to terms with it. I’m grateful that there are ways of preserving eggs that didn’t exist three years ago, and that, maybe, when the time comes, science will have advanced to producing robots who can do the labour part for me, or something. Kind of like a consolation prize for not being able to have babies completely naturally.
On a serious note, however, I would urge any young cancer patient fretting about fertility treatment to just do it. It’s fairly harrowing, but you never know what you may want in the future, and having all these options is what makes our generation so lucky. What happened to me was an extreme case of what can go wrong, they usually say that you’ll feel like yourself within forty eight hours, but I got through it, and so can you. When my body is riddled with drugs and those tinned vegetables that hospitals serve, however near or far in the future that will be, I’ll be grateful for my all insurance eggs. If nothing else, it’s a good way to shut your future children up, right? “I went through a lot more than just pregnancy and labour to have you.”