29 August, 2016

Memories ... still there ...

A week or so ago I had an MRI on my knee, to address the ongoing pain I have had since the accident when I broke my ankle, at a private facility where I have been a number of times; I’ve had two other MRIs there over the years, I now have my mammograms there, and it is also the centre where I had both my HSGs. The first was clear, and as happens quite frequently (anecdotally at least), I conceived only days afterwards. That pregnancy was my second ectopic pregnancy that required a number of interventions over a period of months, and afterwards I needed another HSG that showed both my tubes were now blocked. The blocked tubes meant that my fertility efforts (having already exhausted IVF and other options) were now definitively over. It was scheduled for my birthday, and I’d naively gone to the appointment (as I’ve gone to all appointments at this facility) alone.

Almost 13 years later, comfortable with my life without children, I still choose to sit on the opposite side of the waiting room as I did back in 2003, I still look at the corridor I walked down (and back) for those HSGs, and I still remember standing at the reception paying for the procedure afterwards, holding it together. Getting into the car to leave, even when everything has gone well, still reminds me of getting into the car that day, when I wasn’t so good at holding it together. It doesn’t hurt as much now, but I will always remember.

26 August, 2016

Review of Inconceivable: A documentary

I cringed a little, when I saw that TVNZ was going to run a documentary series following eight couples going through infertility over a period of two years. It was, inevitably, titled Inconceivable, and “follows the highs and lows of ordinary Kiwis trying to conceive.”

I recorded it, but due to my misgivings, waited a few weeks before watching. The other night it felt right, and I ended up watching the first four episodes, finally falling into bed around 1 am.

Other than at the beginning, there is no commentary. The voice-over is purely informative – eg ,couple D are going in for their 2nd egg collection today, etc. This is the (edited, obviously) story of the couples in their own words, and the words of their medical professionals.

The introduction of just a few sentences notes that nearly 1 in 4 couples will face difficulties when trying to conceive. It mentions that this is a journey that now often ends in failure, and has no guarantee of success. It notes that with each couple, their constant companion is hope.

The eight couples are a mix of ages, gender preferences, ethnic groups and diagnoses, although they are all couples. Seven are trying for their first child together (though some have children with previous partners), whilst the eighth are trying to conceive their third, having had successful IVF cycles for the first two. There is male factor infertility, unexplained infertility, genetic conditions causing repeated miscarriage, and a same-sex couple. There are a variety of treatments – IUI, IVF, ICSI, and donor egg IVF.

The medical experts – both doctors, nurses, and lab technicians – on the programme explain very clearly and simply the medical issues, the processes that the couples go through, and the chances for success. One doctor notes the myriad things that need to go right before they can get a take-home baby. We get to see them going through all the procedures – their first injections, egg collection, sperm extraction for ICSI, egg transfer, IUI, work done in the lab, blood tests, laparoscopies, HSGs, ultrasounds, and dildocam. They show the embryo photos that each couple receives.

There is no doubt of the emotional stress each couple goes through. There are no holds barred. A couple is shown being told that their pregnancy had failed at 8 weeks, we see the stress of the 2ww or of having a cycle cancelled, we wait with them to receive the phone calls from the clinic, and we see them receiving the news that they are pregnant or not. One husband describes egg collection as “brutal.” Another couple says, “'The further you get into it the more you have to lose.” A woman looks at her husband after a failed cycle, and says, “I’m sorry.” After yet another negative, they say in frustration, “there's no control. It doesn't matter what you do.” One woman says, "I'm not sure how you're not supposed to be stressed!" Anotherwoman says, “you feel broken" and another couple talks about losing sight of their relationship by focusing on treatment. Two of the woman talk about the real problems of stress eating. One woman said that she’d been married for 18 years, but had never bought anything for a baby, because the prospect that it would never be used was too heartbreaking. One or two of the couples take breaks in the process, trying to reduce their stress levels.

They show a counsellor talking to the couple who have miscarried, and one of the most experienced and well-known specialists in the country talks to another couple about the different emotional experiences of men and women.

The financial costs are not emphasised, but not ignored either. The requirements for public funding are talked about when relevant. We hear that one couple has had to save for six years after their first IVF cycle to have another chance, a chance which the doctor then gives them as about 40%. We see another woman desperately losing weight to qualify for public funding, and another talks about using up all their savings. The lesbian couple had to find a private donor because it was financially more affordable than working through a clinic (and besides, there were no donors available through the clinic), until they could qualify for public funding.

There is humour. One guy laughs that in his first examination with the doctor, knowing that he had a zero sperm count, the doctor said to him, “I’m going to cop a feel.” Another couple giggled about the fact that the mother-in-law asked when her son-in-law was going in to make his “donation.” “Every man’s dream,” he said wryly. Another woman laughs (sort of) about clomiphene (clomid), explaining to the camera that it is “the drug that turns you into a monster.” The lesbian woman said that, having announced to friends that yet another IUI had failed, someone said to her, “never mind, it will happen when you least expect it to.” The couples laugh, showing how brave they are when you can see that tears are so very close too.

Public pressure and insensitivity is also discussed. The comment the lesbian woman received was particularly ridiculous, but they all feel under pressure. They get annoying comments and suggestions from siblings and parents. The Tongan man said he was mocked, and that his brothers have all offered their “help” to get his wife pregnant. He shrugged, saying they’re trying to be helpful, but you can see how those comments have hurt. Another woman was told that she and her husband needed God in their lives. One of the women notes that Facebook is “baby central,” and pregnancy announcements by friends, after trying for only after 2 months, are hard to take.

The couples talk about their conviction that they want to be parents. One couple says, "we feel it's meant to happen, we're meant to be parents," but then note that “a child would be the icing on the cake, not the be all and end all.”

The whole approach taken in the series is calm, honest, sensitive. My nervousness at the outset was that the documentary would be filled with myths, that it would try and hide the emotional, physical and financial stresses. Whilst it is very understated in manner, all these issues are addressed. One couple did get pregnant a month or so after finishing their clomiphene cycles, but the words “miracle” or “just relax” weren’t uttered.

In the end, after two years following these couples, there were conceptions through IVF, miscarriages and births, one using donor egg, and the others using their own eggs. Some couples are left facing life without children or accepting that their family is now complete, at least one or two pledge to continue, and there is a surprise adoption within a family (unsurprisingly, for NZers at least, it is in the Pacifica family). The balance achieved in such a small sample is remarkable.

As someone who has experienced this, and spent the last 15 years in a community of loss, and infertility, I found this deeply moving and, best of all, accurate. I’m hopeful that it will inform many people – young women and couples who may face infertility in the next few years, friends and family of those going through infertility, and the wider public – that infertility is common, it is stressful and expensive, and that there are no magic answers.

22 August, 2016

Thinking about blogging

When in doubt, on Microblog Mondays, I blog about blogging, so I'm going to report that I have been doing lots of thinking about blogging lately, about how much we should keep in mind the sensitivities or views of others who read our blogs, whether or not they are our target readers.

Beyond normal tact and good manners, should we write mainly for our target readers, or should we consider a wider readership when we write? And if we consider a wider readership, how wide should we go? Should we have to qualify our statements all the time, as some parenting after infertility bloggers feel they need to do, by warning of triggers or emphasising that they are grateful for their children, in an effort not to offend any readers who are not (yet or ever) doing so? Or should we own our blogs and our opinions and experiences, as other bloggers do, with talk about pregnancies and children and resulting photos of both, or with strong opinions about aspects of infertility? Where is the line between blogging about our lives or opinions, and becoming competitive or divisive, or is there a line at all?

These are questions I am considering at the moment, and some thoughts are developing, but I’m not quite there yet - so no posts yet, but now the Olympics are over, and my sleep patterns will return to normal, I promise you one or two that might spur some discussion. Though I can't promise any answers.

08 August, 2016

Making real human connections

I was browsing Brené Brown’s Daring Greatly again this morning over coffee, and found her simple statement that she had learned from her research that “nothing is as important as human connection.” I thought then of most people I know, and recognised that – excluding friendly but peripheral relationships we all have - family is at the core of their human connections. In fact, some, perhaps many, barely reach beyond family for their human connections.

Probably, I thought, that’s why there is such a focus on having children, being a family unit with a group of people they can focus on and rely on. After all, I think that many people do struggle to make human connections outside of family; connections where they feel that they belong, that they're heard, that they have a purpose.

Maybe that's why people both pity us, and fear being us, because they struggle to understand human connections outside of family, or to see those connections as real or meaningful?

Yet I wonder too, how many people actually have real, deep, meaningful and honest relationships, real connections where they are heard and feel heard and accepted and understood as they are, with their families - or even, outside their families?

This is one of the reasons why I like blogging – the quest to hear and be heard, to accept and be accepted, to understand and be understood, and to make true connections in a part of my life that few in my day-to-day life understand.

The end and the beginning

                                                                                                       - T.S Eliot

However our infertility journey ends - with a baby or without - it is also a beginning. What differs though, I think, is the transition phase. For those of us without children, our transition phase is one where it is easy to focus on the end, not the beginning. It is a time of mourning, of grief, of loss, when it is easy to focus on what we don't have, what we wanted and tried so hard to get. It is a time that is feared by those still going through infertility, a time that so many cannot see beyond, a time that so often can be mistaken as the final destination. 

But it is only a transition phase, and the mourning too comes to an end, allowing us to look ahead, to develop hope, to learn to appreciate the positives, to start anew. It's a beginning that is different to the one we had hoped for, but it is a beginning nonetheless, filled with promise and adventure and love and joy and new destinations. As hard as it is, we mustn't forget that.

01 August, 2016

Be fair to yourself

We are very good in the infertility world at beating ourselves up. But it wasn’t our fault, and none of us deserved this. We need to grieve; then we need to let ourselves be happy.

It’s easier when we are fair to ourselves. 

By recognising that we are not to blame, we can find it easier to stop blaming others. By accepting our emotions, recognising them for what they are, trying to understand them rather than banish them, we are better able to recognise others’ emotions too, forgive their actions, understanding that we don’t know how they feel. When we accept that we are not bad people for feeling grief at what we’ve lost, or for feeling happiness despite what we’ve lost, we can stop being so judgemental towards others, for what might otherwise have seemed to be selfish actions or self-indulgent emotions.

When you’re fair to yourself, it feels good to be fair to others.