I was asked to write a piece about not having babies and how it is linked to Lynch Syndrome for the Never too Young division of Bowel Cancer UK charity. I don’t openly discuss it often, but here it is… long read…
I had a few months of feeling that biological clock ticking when I was 29, but I had been ill for over a year, and was diagnosed with bowel cancer and all thoughts of babies went out the window as a bowel resection and course of chemotherapy was prioritised.
Cancer changed my life after treatment, and I know it sounds weird to say, but mainly for the better. I wanted to live, and not just exist, to thrive! So, single and ready to embrace my second chance I planned all sorts of exciting adventures like climbing Kilimanjaro, trekking Macchu Picchi, and so on.
I was contacted by Guys & St Thomas genetic department for lynch syndrome testing because my advanced cancer at such a young age was unusual (then, we now know this is not the case these days) and at 35 I was told that they had discovered I had Lynch Syndrome (MLH1). I am pretty rare in that my diagnosis is a “de novo” one – I did not get it from my parents. It somehow started with me…
This came at a time when I was naturally thinking about whether I had children or not, a decision I wrestled back and forth with for a long time. I no longer felt the biological clock ticking, but had always seen children in my future.
Was this what I wanted or was it social conditioning?
Society assumes women are supposed to have children. From a young age we talk about growing up and being a mom, what names we’d like for our babies (Angelique and Harrison), how many we want, would we rather a girl or a boy? Plus, on a very basic level, the female of the species is on this planet to give birth to young.
My gut (excuse the pun) instinct was to not have a child naturally, as Lynch Syndrome is a hereditary disease with 50% chance of being passed down the line. There were days where I felt like the Grim Reaper was standing behind me, picking which cancer he was going to gift me next, so how could I allow that feeling to be felt by another? How could I be responsible for a child to potentially get sick.
Yes, the child may not inherit Lynch Syndrome, so was I denying a life existing on a possibility?
If the child did inherit Lynch Syndrome, it may not get cancer, but what if it did? It would be my fault.
If the child did inherit Lynch Syndrome, then it would have the benefit of health screening from 18 and look how far we have come in recent years… BUT what if a child of mine struggled physically and emotionally like I had done with my cancer, and now my fear of recurrence, and I was to blame?
It was a real struggle to get my head around it all.
I kept circling back to the fact that I felt that having faced the ordeal of cancer and treatment, I could not put anyone else through that. I live with a constant fear of getting cancer again myself to this day. Eventually I made the agonising decision not to have a child naturally, to ensure a faulty gene that causes cancer “died with me”.
I was lucky enough to be offered pre-implantation genetic diagnosis = PGD IVF, which avoids passing genetic conditions to children. However, when first offered this I was single, and was concerned about the high risk of me getting sick again and someone helping to look after a child. Then when I started dating my now husband, in 2013, IVF seemed a massive thing to throw into the mix of a new relationship. I had already made him read up on Lynch Syndrome before we got serious, as I felt he needed to opt into a relationship where at some point he may have to be a carer.
I had to decide before I was 40 due to licencing regulations (I was late thirties by now) and I was not in the steady position I felt I should be to undergo such an intense programme, so the decision was kind of made for me, by me not pushing hard enough for it. But, there was always a tiny part of me that thought that I could still have a child naturally if I really changed my mind.
I had discussed an elective hysterectomy due to Lynch Syndrome risks with my consultants and we earmarked this for when I was around 43/44. However, my second cancer diagnosis came along in 2019 and meant I needed a panproctocolectomy and a stoma – a hefty operation with a lot of recovery time. Bearing in mind my hysterectomy would be a total hysterectomy with bilateral salpingo-oophorectomy with a long recovery time also, all parties felt it was in my best interest to have the hysterectomy a year earlier than planned, in the same operation.
I don’t think I had made peace with my decision not to have children, as long as I had a womb there was always hope, but within weeks of this second diagnosis this would be removed.
I’ve thought long and hard, for years, about whether I wanted children, or felt like I should have them. I’ve many friends with children and hats off to them, they do an awesome job! (particularly in lockdown!) Their lives have been changed and I found myself having to address whether I wanted my life to change in that way.
I’ve a dear friend who had a baby when she was 46. In fact, look at Halle Berry, Janet Jackson, Cameron Diaz, all over 46 when they gave birth. So, a part of me thought I still had time…
But time ran out.
At one point there were too many choices, and then there were none. My choice was being taken away. Even if I had ended up in the same place, choice was always there. Choice is underrated until you do not have it.
I still question if I made the right decision. I know that I couldn’t have lived with myself if a child had got sick and I wasn’t brave enough to start the journey on my own. I wanted to be a mum, yes, but I wasn’t desperate enough to take the risks.
Some days I am fine with the choices I have made, and others I can feel like I’m not fulfilling my life to its potential, (or societies idea of potential) so it is hard. I overcompensate 😊 I adore and fuss over the other kids in my life when I can, my beautiful step-daughter, my nephew and niece, and my godchildren.
The sting in the tail came 6 months ago, 16 years after all of this began. With further review into my Lynch Syndrome, by a most wonderful, clever and charming genetic scientist we’ll call Dr F, meant that he questioned a few things that I hadn’t (his understanding of Lynch is so much better than mine). I am the first person he knows of with the specific variant that I have, and the first of this variant with a de novo rearrangement.
These words broke me:
“OK, so, you are one of these rare people who have methylation of MLH1… it is spontaneous, so the parents don’t have it, your sibs won’t either, and it won’t be passed on to your children”
Never too Young: https://www.bowelcanceruk.org.uk/campaigning/never-too-young/
Lynch Syndrome UK : https://www.lynch-syndrome-uk.org/
Up Yer Bum : bowel cancer awareness & charity events 