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.

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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.

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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!

Ten steps to goodbye in Southwold

  1. We buy ice cream microphones, chocolate and mint. They sing a song of holiday, our caramel cones. We are welcomed in Southwold by sun and blue sky. We walk beside beach huts, peering inside. There are hatted old folk with foldaway chairs. They have tin cups of tea and radios for company. They nibble sandwiches and snooze in their seaside sheds.

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2. As a child, I believed that doing a handstand proved my immortality. As long as I could stand upside down, I would live forever. On Southwold pier, I scissor kick the sky. My shadow leaps with delight, challenging my adult doubt.

Mum100-blog-IVF-miscarriage-Southwold-pier-handstand

3. There are thousands of bronze plaques, permanent fixtures on the pier railings. Messages of love and remembrance, odd little quotes. Each one is a short story, a marker which states, ‘I lived and loved well on this piece of Earth’. They say, ‘read me, so I am remembered’.

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4. We play coin-operated machines, handmade by a Great British eccentric called Tim Hunkin.

  • There is Whack a Banker, a fabulous game for shifting anger. Thirty seconds to bash as many bankers as possible.
  • In The Booth of Truth, we receive dodgy readings of our character, based on Barnum statements that could apply to anyone.
  • In Mobility Masterclass, we practise walking across a motorway with a Zimmer frame. The aim is to get safely to the dance hall the other side – there are three settings for this game, aged 80 (easy), aged 90 (hard) and aged 100 (extreme)!
  • I win big on Pirate Practice, one billion dollars my prize, for steering my pirate ship past rocks to raid a yacht.
  • I have a consultation with The Doctor, half man half mummy. I put his stethoscope to my chest, then he scribbles an illegible prescription. Does it say ‘margaritas’? I think it does!


5. We devour fabulous food at Sutherland House fish restaurant – three courses for the two little piglets in the corner.


6. At twilight, we have the town to ourselves. We are like kids in an abandoned playground. There are so many grand houses with no lights on inside – empty palaces that come alive only at weekends, when Londoners unlock their second homes. There is the occasional house, still inhabited by local people. We look out for the yellow glow in windows. We see a pair of feet up on a living room table – there is life! – but mainly, Southwold on a Thursday night belongs to gulls in the black sky, shy rabbits that hop between poppies and long grass. As we approach on the coast road, they dart for cover, their white tails disappearing down holes.

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7. The beach is ours for the night. We own this stretch of the east coast. As the sky darkens, lights come on in the water – big ships sheltering from the harsh North sea. The Liquid Giant spits salt on the sand. Diagonal waves race to shore. Under the pier, we look between sea-beaten legs. The noise doubles, trebles, we are part of the sea under here. Out the other side, we climb over slippery rocks, to see red Mars above.

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8. Back in town, the lighthouse beams safety warnings to ships at sea. A crescent moon joins the display. Gulls loop between light shafts.

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9. In the morning, the sky is grey. We walk the length of the beach again. We watch the water crash into the sea wall. In winter, the waves smash over the top of the beach huts. They take the exposed huts away, to stop the North Sea breaking them to pieces.


10. And then we know how to say goodbye to the two tiny lives we lost. At Party Pants on Southwold High Street, the shopkeeper inflates purple and pink helium balloons. She goes to another shop for us, to get some tags. We write our messages and fix them to the ribbons. We walk through Southwold town, then up the pier.

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The wind is strong on the pier. Our balloons bounce against each other. They are like toddlers play-fighting. We try to take a photo with our messages showing, but soon we surrender to nature’s force. When we let the balloons go, I feel the drop in my stomach, the sting at their loss. They climb in the grey sky, floating north west. We find a bench, Dad 100 puts his arm around me. Tears come. We watch them rise, impossibly high. They are visible for much longer than I think they will be. Then there is peace beyond sadness – seeing them tied together, still climbing. They are a speck in the clouds now. I blink and they are gone.

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A big thank you to Dad 100, who took all the brilliant pictures for this post – you’re very lovely x x x 

 

Today, yesterday, tomorrow

Today

My intention this morning was to write a post about keeping busy and cheerful – and the day did begin on track. I danced to some tunes in the living room. I air-boxed infertility. I had a soak in the bath and enjoyed the warmth on my back. I used generous quantities of sea salt body scrub. Then I tucked into a large bowl of porridge with banana and nuts. I was set up for the day.

After breakfast, I sat down at the computer. I intended to create my plan for staying positive. The blank page would not be filled, however. My eyes glazed over and my brain switched to standby mode. I just couldn’t make myself think. I flicked through social media instead, to find a hook back into the world. Somehow, I managed to send the hospital report to Airbnb, who are considering our refund request for the Ibiza accommodation. It took an hour to achieve that, however, as I couldn’t work out how to attach the document on the website. I cried on the phone to the Airbnb agent, who said I could email the report to him instead – thank you Paolo.

For lunch, we had homemade soup and a long hug, which is when I remembered that I don’t get to decide how this goes. Many people have said to take it easy, that the feelings will come and go. So I went back to bed this afternoon and slept for an hour, which was the perfect medicine.

At tea time, I had peanut butter and honey on toast (a suggestion from a friend on Twitter, which sounded so disgustingly delicious, I had to try it). Then the spark came to do a quick drawing, as we’re packing for the seaside and I didn’t want to go without saying thank you for the loving messages – they take the loneliness out of this experience.

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Yesterday

We had a three hour wait for our blood test results, which would indicate whether a scan was required. While we waited, we left the hospital for a walk in the sunshine and some lunch (another great suggestion from an IVF sister). On the way back to the Early Pregnancy Assessment Unit, we picked up a new prescription from the hospital pharmacy for Progynova and Cyclogest – to signal our confidence to each other that there was good news ahead. When we returned to the unit, there was an episode of Jeremy Kyle on the waiting room TV. It was a DNA testing episode, where they prove conclusively who is or isn’t the daddy. Cue the shouting and finger pointing and storming off set – nightmare show!

Thankfully, we were called by the nurse. She was quick to tell us the result.
“I’m afraid it’s not good news,” she said. Six little words that ended IVF1.

We were taken through to the doctor’s room. It was Nargis, the same doctor as last Thursday. She was kind and very clear. She said to stop taking the medication now. I felt a bit daft clutching the prescription bag.
“Come back in a week’s time for another blood test,” Nargis said. “We need to monitor the hormone levels, to make sure they drop further.”

Walking out of hospital, there were just sounds – footsteps, alarm beeps, doors opening and closing. It was a strange experience of shrinking inside myself, like a hedgehog curling up. People were featureless shapes in the corridor. It is true that the world blurs with bad news. In the hospital entrance, we were stuck in a buggy jam, but the sensory shutdown protected me. The buggies were just dark blobs. With his arm around my waist, Dad 100 steered me through the gap. When we got to the car, we sat for a minute, holding hands.

Naively, we thought we were prepared for this outcome. Since our double embryo transfer, there have been so many warnings that things weren’t right. Low beta results, continuous bleeding, medics giving opinions – but of course, hope is stronger than all of that. The instinct to protect and believe in the life inside me superseded all the gloom. So when the conclusive statement came – “your beta-HCG levels have dropped, which confirms the miscarriage” – we both felt a fresh punch.

Tomorrow

In the morning, we’re heading to the east coast for our overnight stay. We have booked a comfortable hotel room with a big bed and sea view. I’m really looking forward to the fresh air and the old-fashioned arcade games on Southwold pier. Sunshine is forecast when we get into town. See you all very soon – thank you so much for your friendship.

Mum100-blog-weather-Southwold

Happy holiday head

I woke up with a fuzzball head – that feeling you get if you’ve stayed up late watching crap TV, gobbling chocolate. There was a swirl in my stomach. I said to Dad 100, “I feel a bit pregnant”. He suggested a group hug.

This slightly pregnant feeling has come and gone today. In the last four weeks, I have learned that symptoms, or lack of them, do not necessarily mean what I think they mean. Tomorrow, our scan will clarify, we hope.

There is an aeroplane landing in Ibiza this evening with two empty seats. We have no regrets about cancelling. It would have been beyond daft to travel to a small island, a boat ride from Ibiza Town, with this question mark about the nature and location of our pregnancy. Formentera can wait.

Soon, I need to look for new work. The money I set aside for time out in IVF1 runs out in August. I’m not sure where the next project will come from but I know that confidence will come by taking even the smallest actions towards work – baby steps are the most creative, after all.

For now, it’s holiday time. So, I’m dedicating this week to happiness.

Reading

Over the weekend, I picked up a fine haul of books at the Stoke Newington Literary Festival. I was drawn to the heightened emotions of gothic tales – Sarah Perry’s After Me Comes the Flood and Eleanor Wasserberg’s debut Foxlowe. Eleanor gave a captivating reading by candlelight in the 16th century Old Church (the only surviving Elizabethan church in London). The setting was ideal for spook and intrigue.

Candelight-Old-Church-Stoke-Newington-Literary-FestivalThe authors also discussed Mary Shelley, including her experiences of loss as a mother – three of Shelley’s four children died in early childhood, from premature birth, dysentery and malaria. There was also Shelley’s own traumatic birth. Her mother, Mary Wollstonecraft, died due to complications in childbirth, when her daughter was just eleven days old. From these beginnings, the birth of Frankenstein seems inevitable – Shelley’s classic gothic tale, conceived 200 years ago.

Sun

After-Me-Comes-The-Flood-Sarah-PerryLondon glowed gold today. I lay on the long grass on the common with the sun on my face and Sarah Perry’s After Me Comes the Flood. This book has incredible atmosphere, eerie and mesmerising. I disappeared into the tale of John Cole, the man who escapes London, only to break down on a country road. He makes his way through pine trees to a house, where to his surprise, he is expected.

Food

I was born a little pig and I shan’t change. Tonight, I’m dreaming of peanut butter, spread on crispy toast, with banana slices. This snack is both disgusting and delicious. It sticks to the roof of my mouth and clogs my teeth – but, my god, when this combo hits the bloodstream, my brain lights up like Blackpool tower.

Sea & travel

Dont-Need-The-Sunshine-John-OsborneThe next best thing to a spa in Formentera is a B&B in Southwold – oh yes it is! At Stokey Lit Fest, we went to an event with writer John Osborne. He read from Don’t Need The Sunshine, his book about the crumbling fascination of British seaside towns. John read a passage where he plays the coin-operated arcade machines on Southwold pier. They are ‘lovingly constructed’ games, with names such as The Chiropodist, The Zimmer Frame Simulator and Walking the Dog.

When we get home from hospital tomorrow, we’re booking an overnight stay. There will be battered cod and fat vinegary chips. We’ll share a side of mushy peas. I will crunch my gherkin alone, however, as Dad 100 thinks they are the preserve of monsters. There will be pier games and ice cream. After dark, we’ll sit on the beach and star gaze.

Who needs Formetera, eh?

Sisters

My IVF sisters are a constant source of happiness. These connections are vital to me. They allow me to find out what I’m really feeling and deal with it. I cannot navigate this strange journey alone. I have booked a ticket for Fertility Fest in London on Saturday 11th June – for some face-to-face time with people who understand.

And I must say thank you to my real sister, Georgie, who reaches out consistently with love and support.

Drawing

Today’s doodle reminded me to focus on what makes me happy.

Mum100-blog-IVF-journey-do-what-makes-you-happy

Music & dancing

This Paolo Nutini song helped to shake off the fuzz this morning. I love the teenage simplicity of the idea that new shoes can fix a rubbish mood – and it’s always good to move my bod to music.

Comedy

I want to laugh until my cheeks hurt this week. Daft cat or monkey videos will probably do the trick tonight. I will also surprise tickle Dad 100 and he will attempt to get me back. Later this week, we’ll find some laughs on Southwold pier.

Sleep

My lifelong love, sleep! I’m an eight hour girl. Life is baffling enough without sleep deprivation – I’ll willingly do my stint at broken nights when my babies arrive, but tonight, I will sleep very well after the fresh air and sunshine.

Hugs

When Dad 100 wraps his arms around me and squeezes tight, the tension flows out of my body. Virtual hugs from friends online relieve mental stress.

Each hug is a jab to infertility’s jaw – BAM!! Sending a big hug to everyone out there who is suffering. Let’s stick together – because as a team, we can knock infertility out.

A faraway star called hope

Mum100-blog-IVF-hope-uncertainty-incomplete-miscarriage-early-pregnancyPseudo sac, pouch of Douglas, foetal pole – a fresh batch of medical phrases I picked up in hospital on Thursday.

If nothing else in IVF1, my vocabulary is growing.

The day starts well

My friend Jessie visits. We met at university sixteen years ago. Somehow we managed to get degrees, despite our commitment to the pub over the road. Jessie has been through so much with pregnancy, including miscarriage, stillbirth and successful pregnancies. Thank God for friends with experience. There is no awkwardness when I tell her my news.

Jessie tells me about having no pregnancy symptoms with her two kids. She tells me about having an early scan with her daughter, where the doctor wrongly diagnosed an incomplete miscarriage. We talk about the loss of her son and how difficult people find it if she mentions him. We also speak about her two teenage kids – who were a tot and a pregnancy bump when our friendship first started.

We head out for lunch. We order juice and healthy-sounding burgers. We pick up our conversation with the plot leaps in friends’ lives, since we last met up.

Suddenly, I have an intense cramp, so strong that I feel sick. I try to stay with the conversation. There is that daft British instinct not to make a fuss (stupid habit!) but then comes the heaviest bleeding yet.

Thankfully, common sense returns. I tell Jessie what is happening. She understands, immediately. We make our apologies to the café staff and head home.

Game shows and new words

Dad 100 and I drive to hospital. We go straight to the Early Pregnancy Assessment Unit. A sleepy lady on reception gives me a clipboard with a form to fill out.

During our afternoon in hospital, we discover that Channel 4 afternoon telly is the same as thirty years ago – Fifteen to One and Countdown – except both shows have different hosts now. The presenters I grew up watching are now retired (William G Stewart) and dead (Richard Whiteley). I laugh at the swift reminder of my age.

Within ten minutes, we see a nurse who takes brief details. Back to the waiting room for more quiz questions – I get one right about the Pixar movie, Inside Out (great film) – then we are called for a scan.

The sonographer is an Irish man called Robert. I ask him to show me what he can see on the screen. He shows me my right ovary, normal he says. I look at the grey ball with black follicles, an asteroid in space. Then we whizz over to my left ovary – abnormal, he says, due to an endometriomal cyst. Old news, Robert, old news.

Robert says there is fluid in my pouch of Douglas – er, sorry? my pouch of whom exactly? It turns out there’s a cavity between my uterus and rectum, named after a Scottish anatomist called Dr James Douglas. The good doctor explored this area of female anatomy in the early 18th century. He then named body parts he discovered after himself, including said pouch!

A jellyfish head

Then Robert shows me my uterus. The consulting room suddenly feels wide open, roofless. Time stops for at least twelve heartbeats. Robert points the device at the top of my uterus. He shows me what looks like a jellyfish head – a floaty ghostlike appearance.

“It looks like a small gestational sac,” Robert says.
“Oh, really?” I say.
Dad 100 and I peer at the screen, hopeful, a bit tearful.
“But I can’t see anything inside it,” Robert says. “There’s no foetal pole or yolk sac, so it may be a pseudo sac.”

A pseudo what?

When I am dressed, I ask Robert to explain further. He is perching on the clinical waste bin by the door, however – he’s a scan and run kind of guy.

“Take a seat in the waiting room,” he says. “The doctor will call you soon.”

Cue the purple plastic chairs and the theme tune for Countdown. Dad 100 and I lose ourselves in the letters and numbers games. I get a 7 letter word – PLASTER. I award myself an extra mark for the relevance to our location.

The doctor calls

Nargis is her name. She is friendly with a round face, around fifty years old. I am reassured by her slightly messy hair. In the consulting room, Nargis invites us to take a seat.

I peer at Robert’s report on her desk, while Nargis types up notes. Have you ever tried reading medical words upside down? It’s a skill, I tell you, to cross your eyes in exactly the right way, whilst trying not to be caught out.

I learn from my snooping that I’m 6 weeks pregnant. The expected delivery date is 26th January 2017, tucked between my birthday on 16th January and Dad 100’s birthday on 4th February.

I see Robert’s report of the 2mm gestational sac and I feel that wide-open-stand-still feeling.

Then comes Robert’s diagnosis: “incomplete miscarriage.”

Okay, I’ll stop reading now.

Report

“There is always a chance”

“So, what is happening actually?” Nargis says. She has an uplifting smile.
“No idea,” I say.
“We have seen a very tiny sac. It could be a pseudo sac or it could be a pregnancy sac. At this moment, we are not sure.”
“So, there is still a chance that there’s something in there?”
“Might be, I don’t know, but the pregnancy hormone level suggests that it could be an incomplete miscarriage or ectopic. We have not seen any foetal pole. No yolk sac.”

Nargis takes time with us. She asks questions about the level of bleeding and pain. She doesn’t rush us, which is the best gift any doctor can give. We can think and breathe and ask questions. Nargis takes some more blood from my arm, to test beta-HCG levels and iron.

“We will do another scan on Tuesday and we will test your hormone levels again,” Nargis says. “Then we will discuss what management we will do.”
“Is there still a possibility of things working out?” Dad 100 asks.
“I am not sure at the moment. There might be. There is a sac. To see something inside, the hormone level should be around 1000.”

I ask Nargis about other explanations for the sac. Do they sometimes form without anything in them? She says it could be that – a pseudo sac – an impression that I am pregnant. Sometimes the uterus will do that, apparently, in response to a pregnancy of unknown location. It can also mean an incomplete miscarriage. She says the fluid in my pouch of Douglas may have come from the gestational sac.

“In your experience, Nargis, are there ever cases with this amount of bleeding, where things work out?”
She smiles, takes a breath.
“Be truthful, it’s okay,” I say.
“It could be a miscarriage. I don’t want to give you false hope. But there is always a chance. So please carry on with the progesterone and oestrogen until Tuesday.”

Mum100-blog-IVF-hope-uncertainty-incomplete-miscarriage-early-pregnancyThere it is again – a faraway star called hope, twinkling constantly.

Omelettes and psychics

At 4.15pm, Dad 100 and I finally get some lunch in our favourite caff near the hospital. Spanish omelette, chips and peas. Oh, the relief of food. We both feel calmer with grub to demolish over a debrief session.

We agree – we have not yet heard conclusive proof that it’s over. There is the possibility that it was too early to see anything in the sac. I tell Dad 100 about Jessie’s story of her early scan and the wrong diagnosis of incomplete miscarriage. How we reach for hopeful stories at these times. We devour our food like hungry bears and head up to the counter to pay.

A woman calls out to me from across the café.
“I like your shoes,” she says.
“Thank you.”
She has wild dark hair. She is wearing clothes that could either be pyjamas or comfy casuals. She fixes her eyes on me.
“I am psychic,” she says.
I’m always intrigued by strange characters, so I stop for a chat.
“What’s your name?” I say.
“Sybil. Do you have an education, a husband?”
I say yes for simplicity, although Dad 100 and I are far too lazy bones to organise a wedding.
“Ask me something,” she says.
“Okay, why not? What do you think will happen next Tuesday?”
“It may go up, it may go down,” Sybil says. “But really, the most important thing is balance.”
Sybil then says something about taking care of my heart, which I don’t quite catch. Her parting line is this, “you need to believe in something.”
“Thanks Sybil, that’s good advice.”
“Thank you for talking to me,” she says. “I am staying in the hospital. You can come and visit me there, if you like.”

Outside the caff, it makes us smile. That we still have hope, despite all the odds. That we still believe there may be miraculous news, possibly even delivered by Sybil the psychic!

It’s great to find out that hope is stronger than fear.

How not to do the two week wait

We learn along the way in this glorious pond called life, don’t we? And what I’ve learned since our double embryo transfer is:

  1. It’s called the two week wait for a reason
  2. I am not very good at waiting

Yesterday, our third beta/HCG result was 321 – up from 37 last week. We have managed to baffle our doctors enough for them to refer us elsewhere. Next Tuesday, we’re off on a mini-break to the Early Pregnancy Assessment Unit, to have a scan.

Er, rewind a minute – was that number in the hundreds? Three hundred and twenty one? Yes, it was my loves! There is absolutely no denying it now. I am pregnant. Astonished and thrilled.

Mum100-blog-how-not-to-do-two-week-wait-IVFYesterday, the nurse said again that our beta/HCG numbers are still too low. ‘Possible ectopic’, ‘unviable’, ‘not what we normally see’. Despite these predictions, I’m taking in the warm encouragement from our community online. The medics do not know everything – and until our scan next Tuesday, I am sticking my fingers in my ears about possible complications.

Instead, I will believe in my baby or babies growing inside me, until such time as someone proves conclusively otherwise – as one IVF friend said to me this week, medical professionals often think the worst.

The way I see it is this – let’s say I have two kids. I’m at their sports day, standing by the race track with the athletics coach. Ready, set, go! The coach blows the whistle and all the kids fly off the starting blocks, except mine. The coach blows again, long and hard. My kids make a slow start but they’re having a go. The coach turns to me and says: “rubbish runners, your kids, look at all the others so much further ahead.”

What would I do in this situation?

  • Would I cheer my kids on?
  • Would I feel proud of them for having a go?
  • Would I still believe they can finish the race?

Of course I would! I would never give up on them and go home. And if the athletics coach piped up again – ‘some kids should just take Art class instead’ – I would bop his boney bum with a baton!

I just need to be a mum right now, to the little life or lives growing inside me. I am truly grateful for this strange and wonderful experience of being pregnant.

THANK YOU MOTHER NATURE FOR OUR FIRST BFP!!

From this point forward, I solemnly promise to:

  • Believe in the life or lives inside me
  • Talk to my future kids everyday
  • Take it day by day
  • Have more fun and distract myself more
  • Stop believing that doctors and nurses know everything
  • Refrain from panic buying another holiday (we have to cancel our holiday next week, but I honestly don’t mind)
  • Eat a combination of healthy food and treats, as it doesn’t have to be perfect
  • Avoid Dr Google – my symptoms are what they are, no amount of misinformation can change them


Mistakes I’ve made…

I also wanted to record here all the mistakes I made in our first two week wait, mainly as impulsive reactions to the ongoing bleeding. If we go through IVF again, I can remind myself what not to do.

Transfer day: two 5-day blastocysts come home to mamma – the happiest day.

1 day and 2 days past transfer: nothing to report – I am confident I will breeze through the 2 weeks.

3 days past 5 day transfer: Cramping, dark blood, mild panic sets in. I Google my symptoms. My TTC sisters cheer me up.

4dp5dt: Fresh bleeding begins – I think it’s all over. I draw a butterfly for about three hours – therapy!

5dp5dt: Bleeding, full flow – I decide the time is now to get a strong body. I go for a run around our local park.

6dp5dt: Bleeding, full flow – sod the TTC menu, I eat an enormous pizza.

7dp5dt: Bleeding, full flow – we book flights to Ibiza and a hotel in Formentera. I dance around the flat to celebrate. Infertility, you will not beat us!

8dp5dt: Bleeding, full flow – I do a handstand to prove I’m still young.

9dp5dt: Bleeding, full flow – we book airbnb apartment in Ibiza Town and more dancing.

10dp5dt: Dark blood – first beta/HCG test is 10 – the hospital say it’s a negative pregnancy test. They advise me to stop taking Progynova and Cyclogest. After encouragement from the TTC community, however, I request a second blood test. Hospital agree, although it’s not something they normally do.

11dp5dt: Trace of dark blood.

12dp5t: Bleeding stops – eat a large curry.

13dp5dt: Second beta/HCG test is 37 – total surprise at the rise. The nurse says the “unviable” word.

14dp5dt: an uneventful day – the official end of the two week wait. Clearance from hospital to go on holiday – hooray!

15dp5dt: Cramping, trace of blood.

16dp5dt: Spotting fresh blood.

17dp5dt: Spotting fresh blood.

18dp5dt: Another uneventful day – hooray.

19dp5dt: Dark blood.

20dp5dt: Dark blood.

21dp5dt: Dark blood and mild cramps. Third beta/HCG test is 321 – utter disbelief and delight, I am pregnant!! Nurse says they suspect ectopic. She refers us to Early Pregnancy Assessment Unit. Advised not to travel. Start process of cancelling our holiday bookings.

22dp5dt: Dark blood and mild cramps. Early Pregnancy Assessment Unit call. Scan booked for Tuesday 6th June at 11am.