Two goodbyes

mum100-ivf-blog-two-goodbyesIt’s been a month since I last wrote, the longest gap since I started this blog. That’s because August was a month of goodbyes: one easy, one hard.

The easy goodbye

We parted with our first IVF hospital. When we started out with them in February 2015, we were bright-eyed newbies to assisted reproduction. We knew nothing about IVF, other than to expect needles and waiting rooms. I believed we’d complete treatment by the end of the year, with a baby bump and our scan pics to show for it. Come December, however, we still hadn’t done our embryo transfer. I felt dreadful between Christmas and New Year, we both did. I knew I needed more support, so I started to connect with people who understood my hopes and fears. Thank god for this loving community.

This July, we made our decision to change hospital. It took fifteen months to do IVF1 (one frozen embryo transfer which resulted in ectopic pregnancy). We just don’t have that much time for IVF2, as the NHS will only fund our treatment up until my 40th birthday in January. So, we went back to our GP, who swiftly referred us to a new hospital in central London. At their open evening, they told us they had no waiting list for NHS patients – a miracle! We set about transferring our IVF funding.

Then we received a letter in August. Our new hospital wrote to tell us we had one NHS cycle left. There must be a mistake, we said, we have two rounds left because originally we were funded for three cycles. It turns out, however, that two of our three rounds of funding were used on one attempt at pregnancy. This came as a total surprise.

If in doubt, write a letter! We asked our first hospital why one frozen embryo transfer has used up two rounds of IVF funding; we also asked why no-one informed us at the time. We do know we are still very lucky to have one more NHS funded cycle. In England, depending on where you live, clinical commissioning groups fund anywhere between zero and three IVF cycles. The postcode lottery in England is clearly a divisive system, where many people are not offered three cycles (as recommended by NICE). That said, we did have important questions about our funding and treatment – we should receive a reply this month.

The hard goodbye

After writing our letter, we both needed a break from all things IVF. Dad 100 wanted some fresh air. He said he was going for a walk to the High Street. I took up my favourite position on the sofa and picked up a chunky Harry Potter book. I’m twenty years late to the Potter party but it’s still a delight to discover JK Rowling’s plot mastery. Her magical tales erase all thoughts of IVF from my mind, which is clear evidence of her wizardry. I dived into Hogwarts. I drank Butterbeers at The Three Broomsticks. I attended a Care of Magical Creatures lessons with Hagrid, learning about Blast-Ended Skrewts.

This is the moment I want to press stop. I want to go back in time like Harry Potter can. Have you ever had that feeling, in your stomach or your heart? – that feeling when you know, before the fact, that something is wrong? It’s like a snapshot of the future, but it’s not a premonition of a precise event. Instead, it’s a tight ball of fear, scrunched up in your gut. When Dad 100 returned from the shops, I had that feeling when he walked into our living room. He had a shiny steel frying pan in one hand (a fertility-friendly replacement for our knackered non-stick pan). His mobile phone was in his left hand, hanging by his side. His face was in shadow with window light behind him.
‘My Dad’s died,’ he said.
‘Oh no,’ I said. ‘Please no.’
I reached out for him. He sat on the sofa next to me. He put down the frying pan and I wrapped my arms around him. I kissed his face and put my hand on his cheek and held him there.

He relayed the phone conversation with his brother. His Mum and Dad are called Win and Leo. They were getting ready for a weekend trip to Blackpool, to celebrate Win’s birthday. Leo went out to the garage to clean the car windscreen. Next thing Win knew, Leo was back inside the house, calling her name. She dashed through to the kitchen and there he was, passed out at the kitchen table. Win dialled 999. She ran for a neighbour, who volunteers with St John’s Ambulance. The neighbour came quickly. He felt for Leo’s pulse. He found a faint beat. The paramedics arrived and they lifted Leo off the chair on to the kitchen floor. They tried so hard to revive him with heart compression and artificial respiration.
‘Pumping at him for ages, they were,’ Win later told us, distressed at her husband’s suffering.
The paramedics took Leo to hospital but he died on the way – a cardiac arrest, they said, brought on by angina. Win thinks the attack happened while Leo was cleaning the car windscreen, ready for her birthday trip.

I hugged Dad 100 tight. I wanted to squeeze love into every muscle and cell. I stroked his head and kissed him.
‘I’m so sorry,’ I said. ‘I love you.’
‘I can’t believe I’m never going to see my Dad again.’
I felt a twist in my stomach. We cried at the loss of his father, such a kind and jovial man. Though he had his health problems, no-one expected this abrupt end. Only days before, I’d suggested that we go up north to see his Mum and Dad. We wanted to see them before IVF2 kicked off.
‘Put your feet up on the sofa,’ I said. ‘I’ll do dinner. Do you want some tea? Please let me take care of you.’
I wanted to show him the same level of support that he’d shown me during the ectopic pregnancy – and he did let me look after him. When the fish stew was simmering, I went to buy him some wine. Over dinner, we talked.
‘My Dad always had time for me and he loved to crack a joke. He had a great bullshit detector and he would do absolutely anything for our family.’

Before bed, I replayed the events of spring and summer 2016, going through our embryo transfer. Then came the confusion of the ectopic pregnancy, lost inside me until 9 weeks pregnant. We cancelled our holiday to the Balearics. For weeks, we didn’t venture much further than our postcode boundaries – alternating between home and hospital. It ended with emergency surgery at the end of June and recovery in July. When we got back to normality, Dad 100’s work tipped into his hectic summer season. During that time, there was never a clear three days for a trip up north. Could we have found the time? I felt guilty in light of Dad 100’s loss. Had IVF and pregnancy complications prevented his last visit to his father?

“Busy and strong”

We drove north to see Win. We camped out in her living room on a blow up bed. Usually we stay in a B&B in the village but we really wanted to be with her at night time. For the first time in 62 years of marriage, she was on her own.

Win likes to keep busy. She’s always up on her feet, offering cups of tea and beef sandwiches, handing round the well-stocked biscuit tin. She likes her soaps and Strictly Come Dancing. She grew up in a time of post-war rationing. Her parents didn’t have enough money for the ice cream van that came by but Win didn’t mind. There is hardship in her story but no sorrow. Her Dad died when she was nine. She remembers dunking bread in Oxo beef tea for her dinner. She played out in the streets with her siblings and friends. She took on the local bully boy, Michael, who terrified the other kids on her street. Win stood up to him when no-one else would. The same spirit was shining in her now – she was standing tall, she was fighting.
‘I’ve got to be strong,’ Win kept saying to us. ‘I promised Leo. We always said to each other, “if you pop off before me, I promise I’ll be strong.” ’
‘You don’t have to be brave with us,’ I said.
But Win insisted. This was her way. They’d just had a new carpet fitted and Win brushed it at least a dozen times while we were there, to remove the scuff marks from all the feet coming and going. She showed me the muscle in her right arm – it was like Popeye’s bicep, the result of all the housework and gardening she does.
‘It’s come right up this year,’ Win said, ‘since Leo’s angina took hold.’

Win has three sons and five grandchildren. We all went to the crematorium to help her pick the right spot for Leo. It was a hot and bright day. As we walked around the petal garden, I read the headstones, so many ‘treasured memories’ of husbands, wives, mothers and fathers. It’s always relational in death. That is how we mark our losses, with our name and dates and to whom we related in life. There was a baby’s grave with a teddy bear. The birth and death dates were within a year. It was a sharp reminder of the brutality of nature, how we are not in control of life and death. Win wanted a sunny spot for Leo. She was adamant that the digits of the plot number must not add up to 13 (which ruled out plot 1066). She joked about not putting Leo between two women.
‘They’ll be trying it on with him,’ she said, and we all laughed. ‘Such a good lad, he was, my Leo. Gave me anything I wanted. They’ll all be after him down there.’

The hardest goodbye

The following day, we took Win out for a birthday meal. She was dressed in a pale blue suit with matching handbag. She had sweet potato and ginger soup for starter and cottage pie for main, with a pile of vegetables. We took photo evidence of the feast to show her granddaughter, who had given us instructions to make sure Win ate enough during our stay.

After lunch, we met up with the family to visit Leo in the chapel of rest. The three brothers went in first with their Mum. I waited in the small waiting area with the partners and one of the grandkids. Through the open door, I heard their heartbreak. It was an impossible thought, that my lovely man was seeing his father’s body.

After ten minutes, Win called the rest of us through. The room was clean and cool with lilac lighting. I reached out for my partner, put my arms around him. I hugged him tight.
‘I’m so proud of you for supporting your Mum,’ I whispered. ‘I’m so sorry for your loss.’
Over his shoulder, I saw Leo. He was lying on the bed beneath a dark blue cover. I could see the collar of his smart white shirt. His white hair was brushed back over his head. His eyes were closed and his glasses were missing. Win smoothed back Leo’s hair, stroked his face. She leaned over the bed to kiss him.
‘I love you Leo,’ she said. ‘What am I going to do without you?’
The brothers reached out for their Mum, pulled her into a hug.

My partner and I went towards the bed. I stroked Leo’s white hair and his cool cheek. There was that childish belief in me, that wish for Leo to open his eyes. I can’t help but hope for the impossible at these times.

That evening, we stayed close to Win. We looked through photo albums – their tanned faces on cruise ship holidays, their sparkling eyes in black and white wedding photos. Win said she felt a bit better, seeing Leo at peace in the chapel of rest – especially after the shocking scenes when the paramedics attempted to save Leo’s life. Despite our protests, Win insisted on making cheese and pickle sandwiches.
‘We’ll do it,’ I said.
‘I want to keep busy,’ she said.

One of the things I most admired about Leo and Win was that they still went dancing together. They danced a lifetime of rumbas and quicksteps and foxtrots. In recent months, Leo had to sit out of the sequences but he still went along with Win because he knew how much she loved it. For Leo’s headstone, Win has decided on a pair of dancers – the symbol of their joyful partnership throughout life. Leo was buried in a brand new suit, made to measure, and his dancing shoes. Win said she wants the same when she goes, so they can dance together again. We told her she’s not going anywhere for a long time. I am inspired by the energy and stamina of this brave lady. I marvel at her long and loyal relationship. Rest in peace Leo.

 

Get the gloves on – anger and pregnancy loss

At 39 years old, I have bought my first pair of boxing gloves. They are red with white stripes down the middle, emblazoned with fierce lions. Lonsdale London is stamped on the wrist and fist. I am ready for the ring – ding ding!

The purchase came after a training session with Dave. At the end of class two, Dave reached inside his rucksack (which is the personal trainer’s equivalent of Mary Poppins’ carpet bag, holding implausible amounts of kit). He pulled out two pairs of boxing gloves and some contender pads. My gut fluttered with excitement. This was an exercise I really wanted to try.

With rain spitting on our faces, Dad 100 and I put on our gloves. We awaited our instructions from Dave, like two eager terriers waiting for a ball to be thrown. Dave demonstrated a sequence of punches. He showed us how to stand for each blow – legs square on for the jabs, one foot forward for the upper cuts and hooks.

“Got it?” he said.
“Yes!”

Dave strapped the pads on his hands and raised them shoulder height. He braced like a defending champion. A group of teenagers were huddled under the pavilion on the green – the crowd for our first big fight.

“Right then,” Dave said. “Let’s have you!”

Mum100-IVF-blog-anger-fertility-pregnancy-loss-ectopic-boxing-exerciseI stepped up first to whack Dave’s pads – WHAM, BAM, SCHLAM! I powered through my shots. Each thwack on the pad thrilled me. My arms filled with hot blood and soon my lungs were working hard to keep up. I was a prizefighter on the overgrown bowling green. My biceps and triceps and flexors smarted with lactic acid. Finally, the hooks: for anyone who is new to boxing like me, hooks are the money shot, the side-swiping cracker-smacking blows. I pulled my arm right back and swung each punch towards the pad. DOOF! DOOF! DOOF! Five with the left, then five with the right. POW! POW! POW! On my final punch, I spun a full turn to celebrate.

I looked across at my teenage fans under the pavilion, expecting at the least an approving nod, maybe a cheer or shout of “respect!” Instead, their eyes followed a spliff around their circle. I laughed at their indifference to my knockout punches, as Dad 100 stepped up to the pads. He launched into his jabs and hurled his hooks, as I cheered him on – his number one fan.

Straight after the session, we went to our local sports shop. We bought pads and boxing gloves – bright red for me, black for Dad 100. Home they came, bringing into our flat that excitable energy of new possessions. I look at them lovingly as I pass them in their storage bag and whenever the anger rises, we say:

“Right, let’s get the gloves on!”

It does help – to concentrate on the pads, to feel the force in my arms, to hear that sock on the pads. The rush of power and release makes me feel proud of my body. I become aware of a tremendous store of strength inside me, which is great to feel right now.

Anger and pregnancy loss

It is normal to feel angry after pregnancy loss. So many people have said this to me that I have now accepted it. I’m no longer fighting my anger. It comes when it comes and that is all there is to it. There is no need to deny anger or squeeze it down. It’s an expression of the uncontrollable, the incomprehensible. It’s healthy to feel anger and it’s phenomenal to channel it – SMACK into those contender pads!

I don’t always get it right because my anger comes in unpredictable spikes. Yesterday, for example, we were out for an early jog. The traffic lights turned red and we stepped into the road. A cyclist zoomed towards us. My stomach jumped when I saw the bike was whizzing too close. I yelled at him, “the lights are red!” as his handlebars skimmed past me, then I swiped at his rucksack. The cyclist turned around in his saddle, swore back at me. We both had our moment of fury and I won’t lie, it felt good to vent. Seconds later, however, I thought, “actually, he could beat me up now” – so we ran fast through the graveyard gates and didn’t look back.

For Dad 100, the anger is more of a build up of frustration. He gets annoyed when his computer plays up. He gets more annoyed when yet another SEO company phones him, pitching for business. Sometimes, he turns anger on himself, calling himself an idiot for minor mistakes. I tell him he mustn’t do that – he is feeling the loss as much as I am.

Saying this, we are getting through it. The anger comes and goes but there is plenty of love and fun and relaxation in between. And with regular boxing practice, hopefully there will be fewer clashes with cyclists and telesales agents.

Seconds out – round 2

In other news, we have received a letter from our new hospital, after we transferred our remaining IVF funding. Our first appointment with their Assisted Conception Unit is on 1st September – two and a half weeks away.

We don’t yet know whether to transfer one or two embryos. There is more chance of pregnancy with two embryos but also more chance of complications. I feel very protective over our last two frozen embryos and my remaining fallopian tube. I’m frightened of another ectopic pregnancy, but equally I am hopeful that we did achieve a pregnancy in the first round of IVF, albeit in the wrong place.

Round 2 here we come!

Weeble wobble

Mum100-blog-IVF-wobble-falling-over-getting-upOn the surface, there was no reason for me to lose it. I slept well. We went for a jog around Abney Park cemetery. Beneath tall trees, we darted down paths between ancient gravestones, running in and out of sunlight pools. For breakfast, we ate fried tomatoes and mushrooms on toast. I sent some work emails. At lunchtime, Dad 100 made cheese and onion omelette with mixed salad. There it was on the table, red and yellow and green, ready to go.

The first piece of omelette was too hot. It brought tears to my eyes. I gulped water and started on the salad instead, cucumber and tomato slices in vinaigrette. I couldn’t make eye contact with Dad 100 because of an ugly feeling in my stomach. Quite suddenly it was there, as if an elevator had dropped a floor with us inside. I tried to hold back tears by concentrating on the next fork of food – blowing to cool it, chewing, swallowing too quickly. It was absolutely no good at all. My eyes were spilling over. Unfairly, I wanted my partner to guess what was in my head. Worse, I wanted him to make me feel better.

“I don’t know what to say,” he said.
Without looking up, I said, “I’m not expecting you to say anything.”

Except that was a lie. In that moment, I was craving answers. Why can’t I stay upright for long? How is this going to turn out? Don’t get me wrong, since the surgery there have been plenty of good moments. We’ve started with a personal trainer called Dave. We met him by the goat enclosure at Clissold Park for our first session. He had us skipping and squatting and side-stepping on the grass. We attracted inquisitive gazes from local dogs and toddlers, who were keen to join in. I’ve also taken steps towards work, emailing and meeting with prospects, contacting agencies. I’ve met up with friends for food and conversation. I’ve visited my Mum and stayed two nights longer than planned. These are all positive things. However, punctuating all of this have been sudden tiredness, sharp snaps of anger and turn-on-the-tap sadness. I’ve fixed up social activities then wanted to cancel. Right now, there’s a convincing illusion of complete safety inside our home, potential harm outside.

Mum100-blog-IVF-journey-ups-downs-glum-bags-past-futureIs any of this making sense to you? My head has been a jumble of sensations and thoughts over the last few weeks. Glumbags has been on the scene with his memories and predictions. And I haven’t known what to write on my blog. I don’t want to be gloomy, as we’ve all got enough to deal with in this community, so I have missed the connection that comes with weekly blogging. To write a piece, to press publish, to feel the arms of sisters around me – I have shrunk away from the very thing that makes this process bearable, enjoyable in fact.

Anyway, I lost it over that omelette.
Dad 100 said, “too much thinking about what’s happened, it’s not doing you any good.”
Through wonky ear filters, I heard, “why don’t you pull yourself together?”
I said, “I’m trying my best. Can’t you see that? I’m looking for a new contract and training courses. I’m meeting up with friends, even when I’d rather stay at home. I’m working out. Isn’t that enough? I already feel useless enough, without you adding to it. I can’t even carry a baby, for god’s sake.”

I always know within seconds when I’ve been out of order. I left the kitchen. I cried off a face of make up. Up in the bathroom, I scooped handfuls of cold water on to my face. I looked in the mirror and thought, yep, that’s about right – puffy eyes, blotchy cheeks, mascara smudge. I was due to meet with my friend Jill in an hour. I was so tempted to cancel, to swerve my writing class that evening. After crying, I always get tight temples and the start of a headache between my eyes. I could easily call it off, I thought. I can suggest meeting before our next class.

But this is exactly how the gloom wins. It wants me to cut myself off. This is the lie it tells. It says, “you just need a bit more time on your own, away from the world.” And it’s a convincing voice because it does feel safer to close the curtains, to curl up. It is more predictable to disappear into a Storyville documentary or to gawp at the latest drama on the news. Watching the world go mad is a terrible fixation of mine, when I’m avoiding my own life.

Of course, I do accept that not knowing what was happening inside my body – for so many weeks, months – has knocked my confidence. But strangely, all that build up to discovering the ectopic pregnancy, all the alarming symptoms and uncertainty over the diagnosis, the many hospital visits and the operation – that was easy compared to how I’ve felt since the surgery. Whilst going through it, we had to take the next step forward. There was no choice. We had to get to the next blood test or scan or examination. Now, the urgency has gone and I’m tumbling in space.

Thankfully, sense kicked in after my tear storm. I did meet up with Jill. She was great to talk to, actually. She pointed out why it was easier before the surgery.
“It was an anchor, all that stuff going on,” she said. “And what you’re telling yourself now is you should be over it, you should be back out in the world.”
“Yes, that’s it,” I said. “And the normal conversations involved in drumming up work, they feel like rejection. I know that finding new work involves talking to lots of people. It’s about numbers and the truth is I’m not yet having enough conversations – because the ones I am having, I’m taking way too personally.”

Then, for an hour or so, I listened to Jill’s stories. Turning points, those big reversals in life that switched her course – unexpected illness, job crises, family matters. It was such a relief to sit and listen. I asked questions and Jill answered them generously. She told me about her partner walking out unexpectedly and a sociopathic work colleague, who I wanted to slap on Jill’s behalf by the end of her tale. Then Jill mentioned not having kids, something I didn’t know about her.

“I haven’t exactly taken Conventional Road,” she said.

To listen to Jill was to be in the world. I need other people’s stories for relief from my own. I need to hear that other people have been through their own tough times and they are still up and out and doing life. Jill is a smart sixty-something year old, always sharply dressed, a great talker with an infectious laugh – you wouldn’t know, on the surface, there have been these big difficulties in her life. Her stories made me remember how much I enjoy writing. I love to exchange stories with people in the hope of connection. It’s what energises me the most – the identification that comes through sharing experiences.

Before our writing class, Jill and I tapped at our laptops for an hour. Out came this blog. It’s a human-shaped blog, rough around the edges, but it’s something. It makes me feel hopeful to see words on the page, after several weeks of not being able to write.

I have also apologised to Dad 100 – for expecting him to know how our story ends.

A conversation with Dad 100

Mum100-blog-IVF-partners-strong-supportI had a chat on the sofa with Dad 100, asking him about our first IVF cycle. I wanted to capture his thoughts, to acknowledge the massive role he has played in IVF1. This blog is dedicated to all the amazing partners out there – thank you for the heavy lifting you do. x x x

How are you today?

Physically I’m still tired but as the day has gone on, I’m feeling better.

How long has the tiredness been going on?

Since you had the operation for the ectopic pregnancy, three weeks ago. At first, I put it down to having so little sleep on the night you had surgery. In the days afterwards, I thought I’d catch up – but I haven’t been able to shift it.

Why do you think that is?

I don’t really know. Maybe it’s a physical manifestation of sadness? The IVF process so far – it feels like a long time – and our first round has ended with a loss. There was also the stress and uncertainty after our embryo transfer, going backwards and forwards to hospital. Then having to make a quick decision about emergency surgery. It’s all caught up with me now.

We went to see The Quiet House play about a couple going through IVF – how did you find it?

I related to it completely. It was a mirror image of our story. The part that got to me was when they first started their injections. It reminded me of when we first started out and the huge hope we had. I was overcome with sadness.

What coping strategies are important for partners?

I guess it’s important not to bottle things up. I think that’s why I feel better today, because I’ve actually talked about it.

What do you need right now?

I need to rediscover things that make me feel happy, things I love.

What do you love?

I love you. I love spending time together, just hanging out. I love music and playing my guitar. Jamming along to records. I love good food and a glass of wine. I love being hopeful – and I am still hopeful we will have a family.

What would you say to other partners in our situation – when an IVF cycle hasn’t worked out?

Acknowledge your feelings. Don’t hide them.

Do you hide your feelings?

Definitely. I feel uncomfortable talking about what’s really going on. I have a natural response to my emotions to keep them inside – especially with difficult feelings. I tense up physically. There’s also societal conditioning that men aren’t supposed to admit to these feelings. I tell myself I should be able to brush them off and get on with my day. They showed that in The Quiet House play – how Dylan struggled to talk about his feelings.

So, now’s your chance to be really honest. How do you feel about losing our first pregnancy?

Primarily, I feel gutted for you – losing a fallopian tube. I feel sad that we’ve gone through so much and it didn’t work out. I was so sure it was going to be a success. When you had the operation, initially it was a relief after weeks of uncertainty. At that point, I just felt concerned for you. I wanted the operation to work and you to be well. When the immediate danger was over, that’s when the tiredness set in. It’s taken time to surface with me – like delayed grief.

What gives you hope?

We’ve been referred to a new hospital. There is a possibility we can continue our NHS treatment there. We’re also looking at private clinics. And our first round wasn’t a complete failure – at least one of our embryos tried to grow inside you, albeit in the wrong place.

How do you feel about starting IVF round 2?

It would be nice to have a longer break because it has been exhausting at times. But I accept time is of the essence. We need to crack on.

What about being a Dad? Do you still feel the same?

That hasn’t changed. To have a little person to think about – maybe even two – I would absolutely love that.

What have you learned in our first IVF round?

How much I love you. I wanted to be there every step of the way. The big thing was the night you had the operation. I prayed and prayed that the operation would be successful and there wouldn’t be any complications. When I came home to pack an overnight bag for you, I couldn’t wait to get back to the hospital. It was the middle of the night when I returned. There was nobody around. I had to find you. I went to the recovery area and I walked into intensive care – completely the wrong place! Luckily, that’s when I bumped into your surgeons. They told me you’d just come out of theatre. A nurse appeared and took me down. I had to wait for twenty minutes, so I ate a sandwich and a Mars bar – I hadn’t eaten for god knows how many hours – then the nurse came out and said I could see you. When I saw you, I realised how much I loved you. You looked so fragile, actually, coming round from the anaesthetic. I was very relieved you were there and you’d come through the operation.

Do you know how much I love you? You’re an amazing partner and friend in all this. Do I tell you that often enough?

You do. You tell me that you love me and you think I’ve been great throughout the cycle. It surprises me to hear that because I’ve just done what is necessary. I don’t think I’ve done anything that brilliant.

You have been brilliant – end of story! I love you very much.

 

Round 1 to infertility

I have three new scars. They tell me I’m recovering well. Neatly stitched, they close this confusing chapter. They will fade but they won’t be forgotten.

On Sunday, I decorated my scars. I drew a cartoon face. I cut out the features and arranged them around my belly button scar – a fine nose, I think you’ll agree! Dad 100 laughed at the photos.

“You’re daft,” he said, which made me happy.


Last week

After six weeks of inconclusive tests, we booked a scan with an early pregnancy specialist. It wasn’t an easy decision because £380 is a lot of money for us to spend on a second opinion. Were we overreacting? I did ask myself this, especially when our hospital downgraded the risk after a scan on Tuesday. I was grateful for the reprieve from methotrexate, I really was, but there was still a quiet voice inside me, whispering that something wasn’t right. Dad 100 was worried too, which decided it for me.

So, on Thursday afternoon, we went to see Mr Jurkovic in a grand Georgian house on Harley Street. He had a large office on the first floor, with high ceilings and comfortable chairs. His face was serious and kind. He asked us questions and listened carefully to our answers – good doctors always have good ears. I handed him a typed summary of the last 44 days: beta-HCG levels, scan results, blood and pain. Through spectacles, he considered the information. Then he asked me to prepare for the scan.

Through the red door

Dad 100 and I held hands during the scan. Would we get another uncertain diagnosis? We turned to the other-worldly images on the screen. Mr Jurkovic confirmed there was no pregnancy in my womb. He found my ovaries and pointed to some blood in my abdomen. Within minutes, he became focused on a round mass. He drew lines across it on the screen, measuring from top to bottom, side to side.

“Here it is,” he said. “The ectopic pregnancy.”

As quick as that, he found it. I felt a spike of adrenalin. To my untrained eyes, it was just a grey blob, but I didn’t doubt him. At 9 weeks pregnant, we saw our pregnancy for the first time. There you are, I thought, all along. I felt relief and sadness and love, all squashed in one ball of emotion.

Mum100-blog-IVF-pregnancy-unknown-location-ectopicThe pregnancy measured 33mm x 27mm x 20mm. It was in such an obvious place – through the red door of last week’s drawing, inside my left fallopian tube.

“How could they have missed this two days ago?” I asked.
“It does happen,” he said. “You really have to know how to look.”

One way to go

Mr Jurkovic advised us to go straight to A&E at the nearest hospital. Emergency surgery was essential, he said, due to risk of rupture and further internal bleeding. Methotrexate injection was not a good option, he said, due to the damage to my fallopian tube.

“How much damage?” I said.

I knew what was coming. I absolutely knew in my gut, before he spoke. My left tube would have to be removed too. He explained the high risk of another ectopic pregnancy with a damaged tube. I looked at Dad 100. His face mirrored mine. Mr Jurkovic reassured us that many women have healthy pregnancies after losing a fallopian tube.

Did it sink in? Not really. There wasn’t time to think about implications. We thanked Mr Jurkovic for the clarity and waited downstairs for his report. We were given cups of hot chocolate. We agreed it would be foolish to ignore his instructions.

The final wait

We went to A&E at University College Hospital. Their systems were down and an angry drinker was swearing in the waiting area, but still we were admitted quickly and assigned a bed. Beneath fluorescent lights, I took off my clothes. Dad 100 helped me to put on the hospital gown, but he couldn’t figure out the ties. A nurse helped out with two efficient knots, then two cannulas were fitted, one on each arm. Then doctors with questions, another scan, more tests.

When it was just us, Dad 100 pulled his chair up beside the bed. We talked about the best experiences we’ve had together:

  • Mum100-blog-IVF-ectopic-pregnancy-Venicewatching the sunrise in Venice on Accademia bridge
  • seeing the brightly painted houses of Burano
  • stargazing on Brighton beach
  • getting lost near Bolney wood on a charity walk
  • the night Dad 100 proposed to me in a teenage disco in Camden, after Italy knocked out England in Euro 2012

“Four years ago tomorrow,” Dad 100 said, “I asked you to marry me.”
“Is it really?” I said.
He’s always been so much better with dates than me.

“Do you understand?”

At 8.30pm, we met our surgeon. He was tall and slim with eyes of pure concentration. He named the procedure: a salpingectomy, left side. He gave precise facts about the operation. He asked me to repeat back what I understood. I passed the comprehension test.

Then we were alone again. Dad 100 and me. Perhaps it was to do with speaking the words out loud, perhaps it was meeting the surgeon, but I woke up then, I realised fully what was about to happen. Sadness covered me like shrink wrap.

“I love you,” Dad 100 said. “More than ever.”

I looked across at him. How wonderful it was to hear those words. I wasn’t diminished in his eyes. In fact, the opposite was true.

Time tricks

The clock raced on – nine, ten, eleven. Each hour disappeared, so very fast, as if hospital gremlins were devouring great chunks of time.

At 11.30pm, the call came from theatre. There was lots of activity in our cubicle. Dad 100 and I kissed goodbye. A porter wheeled my bed out of A&E. There were faces at odd angles, two police officers, pale yellow walls, a well-used coffee machine. Then inside a silver lift, going up and up and up. Out on to a high floor in the longest corridor in the world. Not a soul in sight. There were black windows to my left, London city lights outside. I was floating down a tunnel to a parallel universe. At the end of the corridor, through double doors, there were people inside. They were expecting me.

In the anaesthetic room, the clock said twenty to midnight. Tom the anaesthetist prepared his potions, while his assistant Steven wrapped a blood pressure pad around my arm and clipped my finger into a pulse monitor. I put my hands on my stomach and said a silent prayer. May the life inside me be protected from unnecessary harm.

Tom passed me a plastic mask. He told me to hold it over my nose and mouth. “Nice deep breaths of oxygen,” he said, “you’ll taste vanilla.” The smell was like those air freshener trees in cars, artificial and sweet. I focused on my vanilla breathing, as I watched the second hand on the clock. Time was slow now, almost unmoving. Then Steven tickled my throat and there was the black juggernaut, hurtling towards me, that shocking and irresistible oblivion. Could I beat the blackness? I tried my very best. But soon there was the taste of anaesthetic, seeping from my windpipe on to my tongue.

A hand, a voice

When I came round, I was sobbing and shaking. It was like waking from a nightmare I couldn’t remember. It was an instinctive cry of loss and surrender. There was a clock, 2.15am. Then Dad 100 was by my bedside in the recovery area. I don’t have any visual recollection of him, but I felt his hand holding mine. And there was the sound of his voice, comforting me, though I don’t recall the words. On the ward, our conversations calmed me. When he was falling asleep in the chair, I told him to go home to bed. I drifted in and out of semi-conscious corridors. It wasn’t an unpleasant place to be.

Mum100-blog-IVF-ectopic-pregnancy-hospitalAt dawn, I opened my eyes to surprising light. I studied the diagonal shafts across sea green curtains. The angles and patterns occupied my mind. The sunlight stretched into my cubicle, warm and hopeful.

That’s when I decided to take this photo. At 4.50am on Friday – no longer pregnant and one tube down – I realised I have nothing to hide. I wanted to show my face because I remembered the love in our community. Infertility is not a shameful condition. It’s a fact of my life.

Mum100-blog-IVF-ectopic-pregnancy-surgery

Finally, some proper sleep, two or three hours. When I woke up, I sent a text to Dad 100 – he was already up, just about to leave for the hospital.

New goals

I am happy to be home. I appreciate my bed and sofa. I am lucky to live in a comfortable flat in an area I love. I am getting out when the sun shines.

I am very grateful for Dad 100’s love. He is a strong and available man. He wants children as much as I do, but he’s always said the most important thing is my health. I am lucky to have a partner who values me, above anything we are trying to achieve. I must make sure he knows he is loved.

I am still determined to be a mum – more than ever – but this is not about having a baby at any cost. My goal is now to stay safe, sane and happy while we try to conceive. We’re not in charge of the result.

I have some thank you cards to write this week – to all the NHS departments that have helped us and to Mr Jurkovic. Though this isn’t the outcome we wanted for IVF1, there are still dozens of nurses, doctors and support staff who tried their best for us.

I also need to find some new work. I would love to work in this field now. There must be a good use for this experience.

Pregnancy of unknown location

Mum100-blog-IVF-pregnancy-unknown-location-ectopicBehind one of these doors is a pregnancy. It is not a viable pregnancy, our doctors insist. Something is still growing inside me, however. We’re in a land beyond strange.

The diagnosis of miscarriage is now a pregnancy of unknown location. They suspect ectopic again, due to low but fluctuating beta-HCG levels, which have tripled since they diagnosed miscarriage. They say the pregnancy is most likely in one of my fallopian tubes or ovaries. However, they cannot find it on the scan. I guess this is good news – the pregnancy must be small, so there’s less immediate risk of rupture. There is some internal bleeding in my abdomen, which the consultant says may be coming from a tube. This isn’t as drastic as it sounds, however, the medics have assured us.

I’m not sure what I’m feeling – sad? angry? detached? – I don’t know. This latest turn is so unexpected, but we’ve both come a long way since our embryo transfer in understanding we aren’t in control of this. We accepted the loss at 6 weeks 5 days, when we were told it was definitely a miscarriage. Two days later, we said our goodbye in Southwold. I went to Fertility Fest and felt so much love from people, as well as all the amazing support online.

Then, last week, the beta-HCG rose from 282 to 647 – still unviable numbers, no change there. The next day, I had very painful cramps. I laid down in bed with a hot water bottle. I was certain the miscarriage was happening and I felt some relief. Friends online gave helpful suggestions. There wasn’t much increase in bleeding, however. I had some shoulder tip pain, which we were told can indicate ectopic pregnancy. We went to hospital, where I was examined and tested. The beta was up again, 840 this time, but the doctor could not detect a mass.

I have to admit something here. I know it is utterly foolish. I felt a flicker of hope in hospital, when the beta rose again. What if the doctors have got this all wrong? What if there is a viable pregnancy? I know, I know – the verdict is clear from all the doctors – but logic has nothing to do with my desire for a child. It is a primal surge of love I feel, when there is any sign of life at all. I can’t help but feel hopeful, happy.

Cue the Professor

Mum100blog_IVF_monkey_mind_baby_brainMy monkey mind, Professor Wilson, took over last night. He wrote out a summary of key results we’ve had so far. It makes him feel useful, plus it stops him throwing banana skins at me.

  • 10th May: double embryo transfer of 2 day-5 blastocysts – good quality, we are told
  • 20th May (10dp5dt): docs say IVF1 is a negative result – beta-HCG 10
  • 23rd May (13dp5dt): positive pregnancy test but unviable, they say – beta-HCG 37
  • 31st May (21dp5dt): suspected ectopic, referred to the Early Pregnancy Assessment Unit – beta-HCG 321
  • 2nd June (23dp5dt): diagnosis of incomplete miscarriage – scan shows small gestational sac in the uterus at 6 weeks, no yolk sac or foetal pole. I am told to stop Progynova and Cyclogest.
  • 7th June (28dp5dt): beta-HCG drops to 282 – diagnosis of miscarriage
  • 14th June (35dp5dt): beta-HCG is 647
  • 15th June (36dp5dt): beta-HCG is 840
  • 17th June (38dp5dt): gestational sac has gone from uterus. Diagnosis changed to pregnancy of unknown location. Doctors recommend methotrexate injection to dissolve pregnancy. Beta-HCG drops to 804.
  • I have been bleeding for 33 of the last 40 days – mainly dark blood, sometimes fresh.

What now?

On Friday we were given two options for “management” – that term sounds so clinical to me, but this is the language of science after all – objective, unemotional. This is where detachment is useful, I suppose, so doctors can make their decisions each day, without getting emotionally involved.

  • Methotrexate injection

I feel so much aversion to this. Methotrexate is a chemotherapy drug, used with ectopic cases to dissolve the pregnancy. They wanted me to have this injection on Friday when they changed the diagnosis, but I just couldn’t face it. I know it’s irrational but I don’t want to harm the life inside me. They say it’s the safest option but methotrexate also rules out trying for a baby for at least three months – because of the toxicity of the drug to developing pregnancies. And this paper says methotrexate can affect the number of eggs retrieved in IVF cycles, for up to six months.

My blood hormone level dropped again on Friday. Surely there is a possibility this will resolve naturally?

  • Surgery

The doctor said surgery presents greater risks than the injection to future fertility. There could be damage to, or loss of, a fallopian tube or ovary. They cannot find the pregnancy with the scan at the moment, so they may not find it with surgery either.

Mum100-blog-IVF-treatment-control-surrender-letting-go-peacePlease body, remember what you need to do

I have another blood test at 9am – we need to leave for the hospital but I’m dawdling. Dad 100 is telling me to hurry up and get in the car🙂

I know the outcome is not up to me. I can only trust that this is exactly where we’re meant to be.

Fertility Fest – the heart of Infertility Wood

Mum100-blog-IVF-fertility-fest-london-reviewAmongst the tall trees of Infertility Wood, there is a house called Fertility Fest. I found it last Saturday. From the outside, the house looked inviting – I knew this would be a place of great heart – but still, I was nervous walking in alone.

I was greeted warmly as I stepped inside. “Come in, here’s what we’re doing today, make yourself at home, we understand.” These were the messages I picked up within minutes of arrival. How important the welcome is at events like these. I breathed out. I bought some tea.

As it turned out, there was nothing to fear. I arrived at Fertility Fest at 9.30am and stayed for thirteen hours. It was a sanctuary, the in-person equivalent of the love and support I have found online. The festival was designed to be inclusive. There were sessions covering assisted reproductive technologies (including donor conception), involuntary childlessness, adoption, surrogacy and the male experience. Artistic displays and performances weaved with scientific debate, which made for an energising day. Babies were welcome, because men and women who conceive after infertility still need people who understand.

In the opening session, The Director of Fertility Fest, Jessica Hepburn said, “there are two stories here today – it does work and it doesn’t work – I wanted to bring us all together.” For me, this is such a crucial part of ending the stigma around infertility. We’re all connected through the emotional experience of infertility. Everyone has a valuable story to tell. The idea that the only goal is a smiling baby, and that a smiling baby solves all heartache, is flawed and stigmatising. Neat bows may exist, but they aren’t the typical outcome.

The silence around infertility was addressed throughout the day. Kate Brian from Infertility Network UK asked, “why is infertility so difficult to talk about?” In response, Jessica Hepburn spoke about the unwritten societal rule of keeping quiet about trying to conceive. Generally, people announce pregnancies after the 12 week scan, due to the risk of complications or loss in the first trimester. There is also workplace secrecy around trying to conceive (especially for women who fear career implications), as well as British reserve about discussing sex. All these factors are multiplied when infertility is added to the mix – the silence becomes a wall that can be impossible to break down.

And yet infertility is the most universal and human of subjects. Infertility Network UK estimates over 3.5 million people in the UK are affected – that’s one in six couples. This figure does not include single women or same sex couples, so the true figure is probably higher. Playwright Gareth Farr’s view is that infertility affects people on every street. This belief, as well as his own experience with IVF, led to the creation of The Quiet House, produced by Gabby Vautier. Gareth writes about “normal people in extraordinary situations”. The Quiet House takes us inside the home and intimate desires of Jess and Dylan, a couple going through IVF. We witness their hope, despair, anger, sadness, excitement and courage. Ultimately, we see how the twists of infertility transform their relationship. I related viscerally to how Jess tries to cope with the unknowns of IVF. Jess talks to her future child, for example – something I have done, many times, as a declaration of readiness and love. When Jess implores her embryos to grow, I recalled vividly the hours and days following our egg and sperm collection – how we attempted to conjure sparks of life in our living room and whizz them towards the hospital lab. The Quiet House also depicts Dylan’s experience at work. He struggles to tell his boss the real reason he is unavailable for work commitments. This spoke so much of the emotional stutters in everyday conversations, which have the potential to relieve so much pressure, but often reinforce the silence. The scenes with Jess and neighbour Kim, who has a young baby, were also brilliantly performed – there is a clear connection between the two women, despite the dramatic conflict. I loved this play so much I’m going again – highly recommended.

In a session called The Infertility Experience chaired by Natalie Silverman of The Fertility Podcast, I appreciated the dose of reality about adoption from Anya Sizer. There are as many myths about the presumed ease of adoption as there are about conception. Anya explained that adoption does not solve the pain of infertility, answering eloquently the “just adopt” advice that is so often volunteered as a simple solution for infertility. Anya explained that after unsuccessful IVF, there is a mandatory grieving period of 6 to 12 months for people who wish to adopt. She also highlighted that the general public perception of adoption is a) of a baby and b) a relatively uncomplicated process – when in fact, the average age of an adopted child is four and the process can be very demanding.

In The Third Parent: Donation and Surrogacy, Sarah Esdaile and Kazuko Hohki presented their experience of donor conception, in their forties and fifties. In my IVF process, I have sometimes felt that my choices are narrowing. Until I experienced infertility, I loved getting older. I have resisted so many limiting messages in society towards women – around beauty, for example, and the ability to compete professionally. Since turning 39, however, there have been moments when I have struggled with messages about age-related fertility decline. The speakers’ experiences were refreshing and relaxing. On her pregnancy, Kazuko commented, “it was not an embarrassing panic but a healthy desire.”

In the same session, Fiona Duffelen spoke about becoming a mother through surrogacy. She talked about replacing fear of the unknown with curiosity. She said the three bones you need to survive infertility are a wish bone, a back bone and a funny bone. Fiona’s story will be covered on an ITV documentary later this year – one to watch, for sure.

In the plenary session, The Future of Fertility, the panel and audience debated the merits and pitfalls of egg freezing. There is a 1000% year on year increase in egg freezing. Amanda Gore of The Liminal Space presented her public engagement project, Timeless, which creatively packaged egg freezing as a beauty brand, then set up shop in Old Street tube station. Their aim was to raise awareness about fertility and stimulate public discussion around egg freezing. I enjoyed hearing from Professor Susan Bewley in this session. Susan’s view is that social egg freezing is tantamount to saying, “I’m planning to be infertile”. Susan said that younger women are given toxic messages about getting pregnant (“it will ruin your life” etc), when there is no evidence this is the case. I received exactly those messages as a young woman, raised and educated to believe that pregnancy before a certain age would be a failure, a life half lived. If I do have children, I know not to pass these messages on. 

A big thank you to the organisers of Fertility Fest 2016 and everyone who contributed to a brilliant day. You can listen here to Natalie Silverman’s Fertility Podcast from the festival. Roll on Fertility Fest 2017!