Negative

For a moment, neither of us spoke. 

And then, as I sat there on the closed toilet lid quietly shaking, my brain pinged - we had another test! This first one could be defective!

But even as the second test started developing, the tears started to fall. The second line failed to appear and our dreams began to dissipate; the twins that we had both so clearly visualised and planned the rest of our life around evaporated in our minds, leaving nothing but an empty void.

We both called into work sick that day, as I cried almost non-stop and we tried our best to console each other. Nothing could have prepared me for how devastated I felt, and it scared me. All these years that I had been so unsure whether having a child was the right thing for me, I would never have expected to have felt such a strong, excited visualisation of how life could be once there was a distinct possibility of being pregnant, or such an acute, raw grief at that being denied.

At some point that morning, I had to make the phone call to Mrs Reddy's secretary to tell her the news, and I could barely get the words out. She was formally sympathetic, and told me that Mrs Reddy would be in touch in the next few days.

Even though I knew that the Day Twelve test was conclusive, getting my period two days afterwards was the final kick in the teeth - not least of all because it was horrifically heavy. My abdomen was sore and tender and Janis was practically visible when I was stood up, let alone led on my back. And to top it off, a few days in I developed the same pain in my right side that I'd had when I was down-regulating - only this time it was so excruciating that painkillers couldn't touch it, and I felt light-headed and sick. I managed to get a doctor's appointment and was referred for a CT scan for the following week to rule out kidney stones, but after a few more days of watching me wincing Gary decided enough was enough and we spent the majority of the Sunday in Cheltenham A&E, waiting to see an emergency doctor who told me there was little else he could do other than give me extra-strong suppository painkillers (bum pills!) until I could go for my scan on Tuesday.

When that day came - two days later - I was thankfully but embarrassingly pain-free, but went along to my appointment anyway. I was pleased that it was a standard CT, not a contrast one, and I was in and out again pretty quickly. After two weeks, the results would come back clear, with a suggestion that if there had been a kidney stone it may have moved on - and so to this day, we aren't fully sure what caused the pain.

And so, life went on and we tried to find the fun again, although tinged with grief, sadness and monstrous periods. Mrs Reddy had told us that we would be able to try a second round of IVF, obviously from square one again, and for a while we weren't sure if we could go through it again - me from a physical and emotional standpoint and Gary also from not wanting me to suffer. After some deliberation we chose to have a break of a few months over summer to give my body time to recover from the intense hormone treatment (and for us to go on another Last Holiday Before Kids), with an agreement to reconvene around August and giving it one more go.

But nothing could have prepared us for what was about to come.

The dreaded Two Week Wait

After that - apart from the thrice-daily progesterone suppositories - life pretty much returned to normal. I very gingerly went for a few steady runs, making sure my heart rate stayed low and I wasn't getting out of breath, and we went about our day-to-day. But there was a constant trickle of excitement that punctuated everything. I was carrying two embryos! Imagine how amazing it would be if we became an instant family of four?! Sure, everything would be really hard work for a few years, but we'd only have to go through it once. Where would everything go in the house? Should we upsize? 

But... what if it doesn't work?

After the transfer, we had been sent home with two pregnancy tests and urine sample bottles, which sat waiting patiently on the bedroom chest of drawers with specific instructions to test on the twelfth day. Whatever the outcome, we were to ring the Cotswold Fertility Unit; a positive test would be followed up with another test and scan before being discharged from the clinic and referred back to our GP. A negative one... well, we weren't going to get one! With two embryos hanging out in my uterus, at least one of them was bound to catch!

The days passed, and I couldn't help but overanalyse every little thing. I had a bit of cramping and my boobs were tender. Why did I need to wee so much? Could Things be happening?!

Despite waking up stupidly early on the twelfth morning absolutely bursting for a wee, I clung on for the two hours it took until Gary woke up, and we both tentatively approached the bathroom. The instructions stated to collect a sample of the first urine of the day, use a pipette to squeeze a few drops onto the test, and wait for exactly two minutes. Two lines, however faint, would indicate a positive test. One line would be negative. And so, I nervously weed all over my hand trying to aim into the stupidly small tube, and we duly carried out the instructions, putting the test on the window sill and waiting with bated breath - Gary checking his watch constantly and me resolutely looking away and forgetting to breathe.

And then, two minutes later, we looked.

There was only one line.

F**ksakes Janis

Oxford Fertility Clinic was fancy. Nestled within a business park, it was all modern architecture and glass panels - quite a departure from typical NHS settings. Gary and I were shown straight to a private room, and since any eggs would be fertilised that afternoon, Gary was ushered off to have some 'alone' time while I changed into my gown and gorgeous surgical stockings. 

***

At some point during the time I'd been downregulating, Gary had been asked for an updated sperm sample, as the last one had been over two years ago at this point. The results, to our slight surprise, came back showing a reduced sperm count, although motility was fine. No-one seemed overly concerned about this - Gary was going through quite a lot of stress at work at the time, and we were reassured that any number of factors could be at play. Still, in order to increase our chances, we were advised to go ahead with ICSI.

"In conventional IVF at least 100,000 sperm must be placed with each egg to have a realistic chance of achieving fertilisation. ICSI treatment [Intracytoplasmic Sperm Injection] involves the injection of a single sperm directly into each egg. The treatment leading up to and after ICSI is identical to the conventional IVF cycle" - Oxford Fertility

***

The procedure for me was straightforward - in as much as I was heavily sedated and don't remember anything beyond having my feet strapped into Velcro booties on stirrups until I was back in my room with tea and biscuits - and by late lunchtime we were free to go. I won't lie - I was in quite a lot of discomfort and could barely stand upright, which was hardly surprising given someone had been prodding around in my ovaries with a giant suction needle. But we were leaving with the knowledge that 8 eggs had been successfully retrieved, and the next morning we had the wonderful phone call to say that five of them appeared to have fertilised!

And so, four days passed, and the evening before we were due to head back to Oxford we had another phone call to update us on progress. Of the five fertilised eggs, three were good quality - excellent news! But already, the doubts were creeping in. Three embryos, down from the fourteen follicles that were counted at the Day Nine scan? The likelihood of successful IVF was already around 30% for us, and the numbers seemed to be dropping rapidly. Still, we took ourselves away to a lovely hotel for the night to unwind, and make sure we were already near Oxford for our 11:00 appointment the next day. 

When we arrived, things had changed again. It was actually two embryos, not three. And because they weren't as good quality as they could be, we were advised to transfer both at once. 

All of a sudden, we were on the spot. Did we go ahead with both, risk both being successful and having twins? If they both failed, we would have to start all over again from scratch. But if they were going to fail then wouldn't it be better for that to happen and have a full round while the funding was available to us? And all of this was taking place while I was sat on the edge of a surgical couch, with the medical team scrubbed up and waiting for our decision. 

Ultimately, we decided that the professionals knew better than us and to go with the recommendation; and so once again I found myself in stirrups - fully awake and unmedicated this time - with a giant lamp shining up my vag, and the transfer began. Or rather... it didn't. Because everything in my uterus was still so swollen from growing more than one egg at once that Janis was now squashing into my uterine cavity and partially blocking my cervix. 

After 10 VERY painful minutes of poking and prodding down below, and crushing Gary's fingers with my hand, the doctor called out to the embryologists in the lab next to us, ever so calmly, "Have embryos already been prepared?" The answer came back "Yes", and a flicker of an expression crossed his partially concealed face. At this point, my internal alarm bells starting clanging and I asked if everything was OK. "I'm having a little difficulty accessing the wall of your uterus to attach the embryos", he replied, "I'll have to try a longer cannula". At this point, the screen of the ultrasound wand that was being held over my abdomen to help with the transfer was swung around to me, and various indecipherable shadows and white bits were pointed out to me in attempt to show me where the cannula should be, and what was going on (Janis). 

So, once again the transfer was attempted, this time with the longer cannula. It was almost unbearably painful, and felt like it went on for hours. In actual fact, the whole thing took just over half an hour - but should have been a matter of minutes. All I could do was try and breathe through it and know that at some point it would all come to an end.

Eventually - success! The cannula was in the correct position, both embryos were brought through from the lab, injected through and confirmed as no longer being in their petri dish. 

The doctor apologised for how long and uncomfortable everything had been, and we then found out that, had the embryos not been prepared - an irreversible process that takes place in the minutes before a transfer - then he would have abandoned the procedure and advised we return after the inflammation in my abdomen had subsided enough to move the fibroid out of the way. As it was, for the first time ever to my knowledge, I was technically pregnant... with twins!

Nose sprays and needles

March 2022 came around (although not before Gary and I had gone skiing for our 40,000th "One Last Blowout Holiday Before Kids"), and we were both invited in to the Cotswold Fertility Unit in Cheltenham for our IVF planning meeting. This involved an absolute encyclopeadia of consent forms for both of us, including questions about what we would like to happen with any eggs or embryos created during the process should one of us die, and whether either of us had been convicted of sexual abuse - really light reading - and a reminder that the exercise I love - running, heavy lifting, anything strenuous that could twist or damage my overstimulated ovaries - would have to stop. I also had another internal ultrasound. Nothing untoward here - low follicle count, couple of fibroids, let's crack on. 

A couple of days later, a refrigerated van arrived with two boxes; one containing a sharps bin, two boxes of Nafarelin nasal spray, an awful lot of progesterone vaginal suppositories and a mechanical syringe with far too many needle tips, and the other (which needed to be kept in the fridge) containing all of the vials of Ovaleap that I'd need for the cycle, plus a pre-filled mechanical syringe of Ovitrelle. 

***

...Sorry, what?

There are other drugs and variations of IVF depending on circumstances, but I was put through a long protocol (which means shutting everything down and then restarting under completely controlled conditions, rather than short protocol, which cuts out the shutting down bit and is timed with your natural cycle) using the following:

• Nafarelin nasal spray - shuts down your oestrogen production; this eventually causes a bleed to 'flush out' the uterus and ovaries and creates a baseline environment. This stage is called downregulation.
• Ovaleap - the stimulation drug, injected for 10-14 days, that puts the ovaries into hyperdrive and recruits as many follicles as possible to produce eggs all at the same time.
• Ovitrelle - the trigger drug; this is a one-off injection that must be taken at an exact time given by the clinic, to tie in with the scheduled time of egg retrieval.
• Progesterone suppositories - starting from just before embryo transfer and onwards for a number of weeks if the pregnancy is successful, these are used three times a day and help prepare the uterus lining to help the embryo stick.

***

Timing was everything. Google Sheets and alarm clocks became my best friends.

On Day 21 of my menstrual cycle, I enjoyed my last bit of strenuous exercise for a while and began taking two sniffs of the Nafarelin, twice a day, for 24 days. It was gross - there was no way of stopping the liquid from dribbling down the back of my throat and it tasted like a mixture of the eraser end of those ink correction pens we used to use at school, and rotten farts. It also caused the absolute MOTHER of heavy periods - I'd been told to expect a heavier bleed than a normal period, but when you consider my normal periods were already pretty monstrous, this was something else. I was used to using both a tampon and a heavy absorbency pad anyway, but for a few days I was flooding both on an hourly basis. 

A few days in, I also developed an awful pain around the area of my right ovary*, which would come on in the morning and leave me almost doubled over for a couple of hours - something that we never found a cause for but it was suggested that it was due to my hormones being shut down and my ovaries and fibroids (which are hormone-fed) complaining. Luckily, I was able to work from home at the time (I had been told that a positive Covid test could jeopardise the entire cycle, and so we were essentially self-isolating again), and was able to rush to the bathroom as often as I needed for period admin, and wedge a hot water bottle between my abdomen and the arm of my desk chair; the heat and pressure took the edge off slightly.

*It was my left ovary that would later become cancerous, so I don't think that this was connected to my diagnosis.

As you'd imagine from shutting down hormones, my emotions were all over the place. Not only was the fact I was having to go through IVF in the first place weighing heavy, but everything set me off. Adverts, movies, a picture of something cute... A friend's dog put his head on my lap one Saturday morning like he knew I was in pain, and before I knew it I was bawling again. 

After 21 days of the nasal spray - and bleeding for 14 of them - I returned to the clinic for another ultrasound. This was the downregulation scan, to check that the lining of my uterus was thin and my ovaries had been shut down. Downregulation had been achieved, and so the next day I was able to cut down the Nafarelin to one sniff twice a day, and start injecting myself every evening with Ovaleap. I'd decided already that I wanted to be able to do this myself, but Gary had also been thoroughly briefed. As it turned out, it was absolutely fine. The dosage was set on the pen so that all you had to do was insert a cartridge of the drug, screw a new needle on and press a button to deliver the dose. One cartridge would cover two and a half doses, so every third day I would need to inject twice, but the needles were so thin that it didn't take much to grab a squishy bit from somewhere around my tummy, take a deep breath and slide the needle in virtually painlessly. 

(If you're interested, you can watch an instructional video here.)

And so it continued - one sniff in the morning, go about my day (and probably cry a lot), one sniff in the evening and inject into my tummy - for nine days. During this time, the pain in my right hand side vanished as if by magic, although Janis the fibroid was certainly making herself known - not only could I feel it for the first time, but when I lay down I could see a visible lump in my abdomen. 

On Day 9 of injections, it was back to Cheltenham for another scan, this time to count how many follicles had grown. If a good number of them were over a certain size then I would be given instructions on how and precisely when to take the trigger shot of Ovitrelle. If it looked like there was still some growing to do, I'd be invited back in two days' time for another scan, and then the next day, and the next... But this first time, we were delighted to be told that actually, considering my low follicle count, a lot of them had grown to a good size - 14 in total! So much so, that the Ovitrelle was scheduled for two days later, at exactly 22:15, and I was booked into Oxford Fertility Clinic for egg retrieval for two days after that again at 10:15.

After 37 days of meds, things were finally about to start! 

Just keep trying

Of course, in March 2020 the UK entered the first lockdown as Covid swept around the globe, and so we were mildly surprised to receive a referral questionnaire through the post not long after that initial appointment with the GP.

By July, and following an initial phone consultation, I found myself driving alone to the Cotswold Fertility Unit in Cheltenham for a face to face meeting and internal ultrasound with Mrs Reddy. It was during this ultrasound that the presence of at least one sizeable fibroid on the outside of my uterus, measuring around 8-10cm, was picked up, along with a reasonably low follicle count for someone of my age. I accepted the offer of a private blood test to check my AMH levels (Anti-Mullarian Hormone, a substance created by ovarian follicles - the lower the AMH, the lower the follicle count) - a result which came back a few weeks later confirming that the levels were more consistent with someone in their late 40s than early 30s - and Mrs Reddy talked me through the next steps, which would include exploratory abdominal surgery (a laparoscopy and dye test, which would reveal any blockages in my reproductive system), and eventually, if required, IVF. In the meantime, she told me, there was nothing that appeared to be directly responsible for my difficulty in conceiving and to keep trying!

I'd held it together so far, but I remember leaving the appointment and sitting in my car to call Gary, in floods of tears. Despite obviously being at the clinic in the first place because babies Weren't Happening, I hadn't really been prepared for the possibility of finding something like what I perceived to be a giant mass sitting on my uterus, potentially responsible for the years of painful, heavy periods. The fact that I'd had to attend the appointment alone was the first time of what would turn out to be many occasions where I have felt vulnerable, scared, and completely alone.

***

It took another year of tears, frustration, confusion, everyone around us seemingly getting pregnant and occasional phone calls to the clinic to ask what was going on before almost out of the blue I received a phone call on a Thursday just after my birthday in July 2022 to tell me I'd reached the top of the waiting list for surgery, and there was a cancellation slot available on the following Monday. From being told a few weeks prior that I would likely be waiting until at least October, suddenly it was action stations. The next day, I had to attend a surgical pre-assessment, go for a PCR test, and then isolate over the weekend until going into Cheltenham General on the Monday morning. Luckily, the weather at the time was incredible and Gary and I spent the time walking laps of the house and garden to keep our step count up, BBQing our food and camping out overnight - god only knows what anyone watching would have thought.

Monday morning came around, and as no-one was allowed in with me, Gary dropped me off at the hospital entrance and I found my way up to the ward. Soon enough, I was taken down to theatre and woke some time later in recovery, complete with three neat keyhole incisions. There had been a misunderstanding on my part, as I'd picked up an impression somewhere along the way that the fibroid was going to be removed at the same time, so to be told that it was still there* was quite a big disappointment. Otherwise, the dye test had shown that everything was as it should be, but along with the original fibroid it was noted that there was another, smaller one on the other side, measuring 5-6cm. The compressive effect of these fibroids on my fallopian tubes was "obviously the main reason for [my] delay in conception", and we were recommended on to IVF. 

*Removing a fibroid is, as Mrs Reddy put it, "a bloody and complicated procedure", with a lot of potential for things to go wrong. Preserving my fertility was of the utmost importance and so the risk of trying to remove it outweighed the complications it was causing by being there.

I'll admit that even with that knowledge, I was still absolutely crushed each time my period started for the first couple of months following the lap and dye test. I had immersed myself in fertility forums - as you do - and there was such a recurring theme of people who had fallen pregnant following the same surgery as the dye had 'unblocked' things that I couldn't help but get my hopes up. But no - that definitely wasn't something that applied here.

Over time though, resignation set in, and everything started to feel a bit lighter again - albeit now knowing that weird pains and cramps were probably because of the fibroids. I took to calling the larger one Janis. Knowing that we were approaching the path to IVF was scary, and felt unfair. But at last, there was a glimmer of positivity. Medical intervention was bound to finally get us where we wanted to be.

What's taking so long?

"Clear cell carcinoma of the ovary is an uncommon type of epithelial ovarian cancer. It accounts for five to 10% of patients with ovarian cancer in the western world, but 25% in East Asia" - ovacome.org.uk

So how did I end up here?

Well unfortunately, in terms of the 'why me?', we'll probably never know. Since my diagnosis, I have been tested for the BRCA1 and BRCA2 genes that are most often responsible for breast and ovarian cancer where there's a family history, and I don't carry either - despite my mum and maternal granny both having been diagnosed with and treated for breast cancer. The other common cause of clear cell carcinoma in the ovaries is endometriosis - something that was suggested as the cause of my monstrous periods over the years but of which no evidence was ever found. So that leaves us with the last explanation, which isn't really an explanation at all: Just Really, Really Bad Luck.

The Really Really Bad Luck unfortunately doesn't stop here, and is the other part of how I ended up being diagnosed at 35 with a pretty rare and aggressive type of cancer, for which I had no symptoms.

***

When Gary and I were in the getting-to-know-each-other's-life-goals part of our relationship, children were naturally included in the discussions. We were quite young at the time - in uni or recently out the other side of it - and the time wasn't right, but we both envisaged Future Us as being parents. Even in 2013, when we got married, it was still a little bit too soon; money was tight, there was no rush, we wanted to enjoy being married for a while first... As it happened, Gary was very much ready quite a long time before I was - something he has spoken about in his own blog, IVFManBlog. It took me a good few more years, and the relaxation of a fairly all-consuming lifestyle change that began in 2015, to come around to the idea, before realising the time felt right in September 2018.

But then 2018 ended, 2019 began, 2019 ended... and nothing had changed. Month after month, like clockwork, my period would start right on cue. Month after month, I'd have to break the news to Gary. Significant days came and went - Mother's Days, Father's Days, Christmases, Gary's birthdays, my birthdays - that felt like a kick in the stomach as I longed to share news of a positive test while never getting close to needing to take one. Pregnancy announcements from friends, family and colleagues, new babies, celebrations... For us, nothing. We knew that this wasn't uncommon, or necessarily anything to worry about, but we were still surprised. I started my periods at the age of 10, they had been regular from about 12 and despite being painful and heavy (alarmingly so, at times), no explanation was ever really given; naively, I assumed that fertility would never be an issue. 

By February 2020 we decided that it couldn't hurt to speak to a GP and just make sure that there wasn't something obviously wrong, although I was a bit apprehensive to do so and was sure our concerns - which were barely more than a sense of 'What's taking so long?' - would be brushed off. I needn't have worried - Dr Haffenden was lovely, listened to our story, took our histories down and apologised that, as there was only one test for male fertility compared to an absolute raft of investigations for women, Gary would be investigated first and nothing else would happen until that had been done.

When Gary's results came back fine, it was over to me. My hormone levels were checked, bloods were taken for various tests. The only thing that came back was low iron - no surprises there, it wasn't the first time, but certainly nothing that could be responsible for infertility. And so we were referred to Mrs Reddy at the Cotswold Fertility Unit in Cheltenham.

(To be continued)

Well, s**t.

"I'm so sorry. But the results show that you have ovarian cancer."

It was Wednesday 12th October 2022. Gary and I had been invited to an appointment with Miss Hillaby, a Gynae Oncologist who just a few weeks previously had removed my left ovary and fallopian tube, along with a mass (inconclusive, at that time). And following a few brief sentences of conversation, as we naively assumed we were just there for a follow-up appointment, she delivered the news that no-one ever wants to hear.

While we'd been sat in the waiting room, I happened to settle my gaze on an awareness poster listing the symptoms of ovarian cancer: bloating, needing to wee more often, feeling full or having no appetite and pain or tenderness in the pelvic area. "Well, I don't have any of those", I thought to myself, "so that's something".  But within minutes, Rachel - a Cancer Support Nurse who I had met before my first operation - was opening the waiting room doors and calling my name, and a sense of unease crept in.

I don't remember much more about that appointment, other than Miss Hillaby's recommendation for a full hysterectomy and omentectomy, which she had already scheduled for 1st November, an awful wailing sobbing noise that I realised was coming from me, and the look on Gary's face - one of fear and absolute heartbreak.