Welcome everyone! It’s week twenty-two of the “On Being Childfree” blog series and today I’m delighted to welcome Claire. I’ve been reading so many stories from different perspectives that I think I’ve come across all of the potential scenarios but then I read Claire’s story about her cancer diagnosis and subsequent adoption experience. Far from wanting to be seen as a victim, Claire is a warrior. Please do read, leave a comment and share as much as you can, I’m really willing this to grow and grow so that we can help as many people as possible who may be going through something similar.
We Are: Claire & Rob, late 30s
Home Is: SE London
We Do: We both work for the same non-profit organisation
Find Me: Instagram
We got married in 2007 and pretty much started to try for a baby straight away. But three years passed and nothing had happened. So in 2010, we were sent for tests. They came back I had polycystic ovaries and we were told me losing weight would solve it. So in came the diets. You name it I tried it but still no baby.
In October 2012, Rob and I went on a long weekend trip with friends for my birthday. We hired a canal boat and it was on this weekend I had the worst period of my life. I bled through every item of clothing I had, over the bedding, through sanitary pads in a matter of minutes. What should’ve been a wonderful weekend pootling up and down the Union canal in the glorious autumnal weather was hell on earth for me.
I got a referral to a consultant – Ruth. She thought I might have polyps so a small procedure to have a look would sort it out. As the bleeding had stopped she prescribed me some medication to help control it if it happened again and told me to come back once I got my next period.
My period didn’t arrive until early February 2013. It was horribly heavy again but I took the medication Ruth had prescribed and 3 days later my period stopped. So I didn’t bother going back to see her.
This is what happened for the next 18 months. I would have a heavy bleed every 2months or so and then I had continuous light bleeding in-between. It didn’t bother me – in my mind the fact the medication slowed the period so it was “manageably heavy” for three days and then back to light bleeding was enough. So I took out shares in Always (ha!) and carried on with life.
Towards the end of June 2014, I was in a meeting being held in our café at work. The café has white benches. At the end of the meeting, I stood up and my colleague looked at me in horror and pulled me back down. She ushered the other members of the meeting away and came back to me with a handful of tissues – I’d bled through everything and all over the bench. I just wanted to world to swallow me up. So I went back to my GP who signed me off work and I booked to see Ruth.
Ruth was immediately concerned about the bleeding. I was sent for an urgent scan which showed a thickened uterine lining. I was booked in for a hysteroscopy in mid-August. When I had come round from the anaesthetic, Ruth explained that she hadn’t found any polyps but my uterine lining was thick and fleshy so she’d cleared out my womb and sent the lining away for tests. I was told to take another couple of weeks off work. And wait for the results.
The operation was on a Wednesday evening. The Sunday evening afterwards I was hospitalised. I had an infection of the womb and was borderline septic. I was in hospital for three days on IV antibiotics.
I got my test results in early September – the cells in the lining were showing some concerns. It was suggested that the progesterone I’d been taking might be causing this, so I was advised to stop taking it (I already had – it had made me feel insane!) and be retested.
The word cancer started to be rolled around.
Ruth was worried. She referred me to her oncology colleague (Mr Z) and I found myself in the oncology mill of the NHS. It’s FAST but silent. You get sent for tests upon tests within a matter of days but no one explains why. I had another hysteroscopy, MRIs, CT scans, blood tests. I was kept in hospital over night after my hysteroscopy to have IV antibiotics to reduce the risk of another infection.
I was told my results were being seen by the multi discipline team (MDT) on the Wednesday. If it was bad news, I’d be asked to go to an appointment the following day. If it wasn’t bad news, I’d be booked in to see Mr Z for next steps. I got a phone call on the Wednesday afternoon asking me to go to the oncology department on the Thursday afternoon. At lunch time on the Thursday I was rang by the department and told my appointment wasn’t needed – it had been a mistake. Instead I had an appointment with Mr Z the following Monday. The person I spoke to confirmed I didn’t have cancer – PHEW!
I rocked up to my appointment on Monday evening – alone – because y’know it wasn’t bad news so I didn’t need anyone with me. How wrong I was! My test results had divided opinion of the MDT – some thought it was cancer. Others disagreed. But they did all agree I had endometrial atypical hyperplasia. 30% of women with this condition were found to have cancer. My next steps were either:
- A total hysterectomy with bilateral salpingo-oophorectomy – “TH-BSO” -(removal of the uterus, ovaries, fallopian tubes and cervix)
- Back on 18x the amount of progesterone I’d just been on (you know the stuff that made me feel like I wanted to kill myself) and then another biopsy plus all associated stays in hospital and pokes and prods in three months’ time and then still might end up with option 1 being the only option.
Mr Z also dropped the bombshell that the hyperplasia meant I would never gotten pregnant – even without the atypical bit. I had an inhospitable womb. Great. I refused to decide there and then.
I got a second opinion from Ruth. She was convinced I had cancer – they just hadn’t found it yet. Her advice was that I should go with option one. It wasn’t an easy decision to make. I was convinced I’d be the 70% who didn’t have cancer. But I just wanted to feel better.
We asked about saving my eggs. The NHS said my BMI was too high. The private specialist I paid to see was more understanding – he didn’t want to risk pumping me full of hormones when the cancer they thought I might have was linked to hormones. He worried that it would cause any cancer to spread.
So on 11 December 2014 I had a TH-BSO. Ruth made sure I got on the books of Mr J – an expert in laparoscopic hysterectomy. I woke from my four hour surgery with four tiny wounds and an undercarriage that felt like it had been repeatedly kicked over those four hours! But I was home a day and a half later. Amazing!
On 22 December 2014 I got the results from the tests on my womb – I had stage 2a uterine cancer.
I had to wait until 7 January 2015 to find out I didn’t need any further treatment, the operation removed it all. I was officially in remission.
I was also slap bang in the middle of surgical menopause. Now that plus major surgery plus (an unexpected in my mind) cancer diagnosis and I was a mess. But I just wanted to return to “normal life” – not really comprehending what that was anymore. But I picked myself up, dusted myself down and threw myself back into this normal life I craved. I got myself a promotion within my first full month back at work.
And I charged on.
Throughout all of our infertility and then cancer journey, we talked about adopting. We both knew it was something that really spoke to us.
In 2017, we felt ready to start the adoption process. We moved house from our one bed flat to a 3 bed house. We went to an agency and a local authority. The agency told us they wouldn’t consider us as my BMI was too high. The local authority seemed more open – my BMI didn’t matter as long as I didn’t have any underlying health issues. So we went with the local authority.
All was going well – our social worker (SW) for stage 1 seemed lovely and switched on. We got our friends and family to write statements of why we’d make great parents, we started the epic task of ploughing through the vast amounts of paperwork. We read books and spoke to adoptive parents. We paid to have our medicals.
The medical was import for me – as our SW had reassured us – as long as I was healthy my BMI wouldn’t matter for the adoption. I walked out with a clean bill of health. My BMI had no impact whatsoever. Hooray!
We confidently sent all our documents off and waited to see how we would fair at stage one panel. Just before Christmas 2017, we got an email from our SW saying the medical advisor had some concerns regarding my high BMI. The SW and her senior colleague wanted to come and visit us to discuss.
During that meeting I was subjected to the most patronising conversation of my life. I have blanked most of it because it was disgusting. I remember Rob suddenly moving closer to me because I’d apparently made my “I’m so gonna lose my shit” noise.
The outcome of the meeting was – they wouldn’t be moving forward with our application until I had lost weight – for two reasons:
- I might die. Given that I had no underlying health issues – I couldn’t get my head round this.
- I might raise my child to be fat.
I remember lying awake at 3 am processing – I already had concerns about adoption. I couldn’t quite come to terms with the fact that by becoming a parent I would be denying someone else that. The demographic of those who had their children removed from them niggled at me. They were often poor, lower class, vulnerable. Did I want to be part of that process – where those most in need were treated so badly? Where I was treated so badly? Was it as simple as going on some crash diet to reach a number that was deemed appropriate for no apparent reason (each local authority has different ideas of the appropriate BMI to be a good parent!)? Did I want it that much?
I then found out one of the adoptive parents I’d been speaking to had committed suicide. She had managed to hide her underlying mental health problem but the pressure of becoming an instant mother to a one year old had been too much. The adoption order hadn’t been processed yet, and so the child was put back up for adoption. Her husband lost his wife and his child within a month. And that child lost two sets of parents at only a year old. Yet – here I was someone who was mentally strong, healthy, and I was being denied because I couldn’t hide my problem.
We decided to pull out of the process and put a pause on thinking about it until I turned 40. In April 2018, we went on a long awaited return visit to Japan. Having 3 weeks back in the country where we met and fell in love was just the tonic I needed. In Japan if you can’t have children, you have to just deal with that. Be happy with your lot. I found a great deal of peace in that.
The only other option we have is surrogacy – but with the added complication of either finding an egg donor or using the surrogates. Add that to the associated costs, the risk the surrogate might decide to keep the child and I’m not sure it’s worth the heartache. I’ve repaired my heart twice. I’m not sure I could mend it a third time. I turn 40 in October. But I think we already know what we’ve decided. That we will be happy being just us two.
Thank you so so much to Claire for sharing her honest story as a guest poster and sharing her thoughts and views in this piece. As I’ve stressed from the very beginning, this is a warm, empathic platform for people to share their stories, hopes, dreams, fears. Please do read Claire’s story and leave a comment if you’d like to and share this series if you know anyone it could help. Together we are making changes.