Fighting For My Right Not To Have Children

In the two months between my diagnosis and the surgery, I lost count of how many times I had to explain I did not want children, and I was not planning on preserving my fertility. I was used to it – after all, announcing to the world you do not want children rarely goes well, even today. But I was not prepared to have to fight for my voice to be heard.

When you are first told that the only treatment for your condition is a hysterectomy, many things go through your head. For me, the first one was ‘will that cure me?’, but I have always had a very rational mind. Before cancer, and during the diagnosis and treatment process, I was very much focused on the big picture. I saw an issue, I thought of a solution. I only considered the smaller details inasmuch as they could help achieve the bigger goal. This has changed since then, I find the bigger picture terrifying, overwhelming, and I find comfort in details and small-scale decisions.

For me, it was cancer, but many women go through a hysterectomy for other reasons. In a way, I probably had it easy. I did not have to fight to have my hysterectomy, the doctors agreed it was the only viable option. It was going to happen no matter what – unless I refused treatment entirely, which is always an option. And obviously, a hysterectomy is a major operation, with major consequences on your life and your future. Although it is a fairly standard procedure, and there are fewer risks than a number of other major surgeries, it has lasting effects, particularly on younger women. Without a uterus, you will not be able to get pregnant.

I have a pretty good knowledge of biology – I took A-levels (or, more accurately, the French equivalent, the bac) in science, and biology was one of the main components. The minute I heard ‘hysterectomy’, I knew what it meant for my fertility. The doctor who gave me the news made sure to explain as well, to ensure I had all the information. At that stage, he mentioned that it might also be necessary to remove my ovaries, due to the grade of the cancer on the biopsy they had taken. The cancer appeared to be Grade 2, and removal of the ovaries is recommended in that case, as more aggressive types of womb cancer have a tendency to spread to the ovaries as well. If the biopsy had shown Grade 1 lesions only (as my cancer would later end up being), I would have been given the option to keep my ovaries, and to harvest eggs later should I wish to have a biological child.

The procedure which I would be undergoing would be a total hysterectomy with bi-lateral salpingo-oophorectomy. I know, it is a mouthful and a half – try saying it in a language that is not your mother tongue, after you wake up from general anesthesia. No womb, no ovaries, no tubes. It is a lot to take in – or take out, as it is.

On that first day, the first doctor I saw – he did not have an interest in gynaecological oncology, and had very limited knowledge of my case, as he had to break the news to me at a routine appointment and did not have much information – mentioned that I should be thinking about fertility-preserving options. I was overwhelmed. I had just been given the news that I had cancer – you brain cannot process much information after this. Or at least, mine could not. I had understood that meant I would not have children. I was very quickly at peace with that. I had never been particularly keen on having children, and so in my opinion, it was not a huge loss. It was also something I was definitely prepared to do in order to survive, which is what it came down to. I told the doctor there and then that I was fine with it. No children in exchange for a 95% cancer-free survival rate at Stage 1, I would take that any day.

The next day, I had an appointment with a specialist in gynaecology oncology, and a Macmillan nurse was also present. This was exactly what I needed. Facts, accurate information, options, everything was discussed. I had a friend with me, here to support me emotionally and take in all the information I could not process, ask all the questions I could not think of. And at that appointment, they broached the subject which the previous doctor had only hinted at – fertility preservation. That would involve retrieving eggs or ovarian tissue, and freezing them. This could allow for potential future in-vitro fertilization of eggs, and the possibility of having a biological child, using a surrogate. The success rates of such procedures vary greatly, but it was an option.

It was always very clear in my head – this was not something I was interested in. There were several reasons for this, which I had been listing ever since the possibility had been brought up. One of my arguments for not having children even before cancer is that there are too many children in need of adoptive or foster parents, and I was always very open to the idea of adopting instead of having children, if I ever went down the route of having a family. I was not even sure I wanted a family, so it would be a waste of resources and money for my eggs to be preserved, if I ever was to decide I did not want to use them. Finally, I did not like the idea of forcing something that was not meant to be – if I could not have biological children naturally, I would rather not force nature and involve science, resources and energy to try and make it happen. I think it is absolutely right for people who wish to go down that path, but it is not for me. And I think a part of me was relieved. If I said no to fertility preservation, I had a clean break. There was no option, there was no disappointment if ever IVF and surrogacy did not work. I had arguments, I had made up my mind, I was very sure of myself. This was not something I had decided on a whim. I had never really wanted children, I was ready for that option to be taken away from me entirely.

I mentioned this to my team, and they were understanding. They did tell me that they wanted me to see a fertility expert before I made up my mind. I understand why they did. They do have to make sure that you are not going to regret your choice in 5, 10, 15 years. Womb cancer is very rare amongst young women, so not many have to make this choice. Caution is recommended. I was a bit disappointed. In my mind, I had already made my choice. I presented my reasoning, thought it made a convincing argument. It made sense for me. Surely it would make sense for them.

Maybe it did. But they still requested that appointment. I was fragile emotionally at that point, I will not lie. I cried about it, I complained a lot. I felt like I was not being listened to. Now, a year later, I understand. But it did not make it any easier at the time.

Because I was so young and there were factors which could make the procedure more complicated, I was referred to a specialised hospital in Oxford. A new team, a new set of doctors, a new string of appointments. That was going to be my life for the foreseeable future. All appointments, all tests were scheduled. All but the fertility one. At each appointment, I kept mentioning it. I was calling the nurse in between appointments, in between assessments, asking when I could have that appointment. That appointment I dreaded, that appointment I did not want to have.

I was scared. The date of the surgery was getting closer, and still no appointment. I was advised to call the fertility secretary myself. I called, I sent emails, I chased. I was a mess. I was glued to my phone, I was crying in the loo at work, I had to cancel meetings and work trips ‘just in case the appointment falls on that day.’ By that point, I had told about eight different doctors and nurses I did not wish to preserve my fertility, and got the same answer every time: ‘you need to speak to a fertility expert’. I protested (I was truly a horrible patient, and I apologise for it), and was told several times told that it was because I was so young, and there was a risk I would change my mind and they wanted me to consider all the options. I was not young anymore. I had aged about 20 years in the space of four weeks. I knew my mind, I was frustrated. I was afraid it would delay the surgery, as they refused to carry it out without me having spoken to a specialist. Finally, ten days before the surgery was scheduled, I was given an appointment. The hysterectomy was planned for a Tuesday, the fertility appointment would take place the Friday before. Cutting it close.

I had been arguing with doctors, but I was also fighting people in my personal life. People who kept telling me that I should reconsider. Friends. Family. The same arguments that the doctors had made to explain the need for that appointment, my loved ones now gave me to convince me to go ahead with fertility preservation. You are too young. You are going to regret it if you do not do it. You will see, in ten years. But do you not want to try, just do it and see if you want to use them later? It costs you nothing. And probably the most infuriating of all: but what about your future partner? What if he wants children of his own? Arguments that after a while, made me want to cry. Of course I had considered it. Of course I wished that I had been given the choice to have children. Having it taken away from you is extremely violent. It takes away your free will, and even though it is no different from what you wanted, it feels like something has been ripped away from you. I like options. I like having a choice. I often saw myself as one of these women who would decide not to have children, who would stand up against society. By taking that away from me, it was like a part of me I liked no longer existed. But at the same time, it was about making that choice, right there, right then. I would not have children, and that would be it.

All the fight had been taken out of me at that point. I remember going to the hospital, being in a room with the fertility expert, a medical student and another woman. They explained the options. I said I was not interested. And that was it. No explanations needed, no justification. I had made the choice in front of an expert, that was enough. I signed the papers they gave me. I agreed to donate part of my ovaries to research, so they could try and improve on options to preserve fertility in younger girls undergoing chemo or radiotherapy.

I have not regretted my decision. I am still angry about having had to fight to get my voice heard, to even get an appointment. To have had to speak to so many different people about it, to have given the same answer, again and again. To have had to justify my choice in front of people who should have been supporting me during this time, not making me feel guilty about the decision I was taking. To have been told time and time again that I was too young to make a decision like this. I was too young for cancer too, but cancer did not care.

Before cancer, I had to justify my lack of interest in children to people who had no say in the matter. Now, when they ask me, I just tell them that I cannot have children. I see pity in many people’s eyes, but all I feel is relief, because I no longer have to explain myself.

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