My Cancer, My Rules

Something happened today.

It was nothing major. It was nothing that had not happened before. But it is something that always makes me terribly uncomfortable, that makes me want to run home and hide under a blanket for a couple of hours.

As a result of my cancer and the surgery, my body is no longer producing the hormones that are essential to women under the normal age of the menopause. Because I was so young when my cancer was caught, and because it was diagnosed at such an early stage, I was prescribed hormone replacement therapy (HRT). Most women who have had endometrial cancer will not be given HRT, as oestrogen can increase the risk of recurrence in many hormone-driven cancers. In my case though, the benefits of taking HRT would far outweigh the risks, so I was offered to start treatment back in February. Since the start of the pandemic, that has meant monthly calls to the GP, who renews my prescription over the phone, and trips to the pharmacy to collect it. I will need to keep that up until I am 51, the average age where a woman reaches menopause naturally in the UK. That is a mere 23 years of treatment.

I am terrible at renewing prescriptions, so I have dozens of alarms on my phone. I miss them, I snooze them, I end up asking friends to remind me to re-order my prescription. It is not time-consuming – usually a 5-minute phone call to the GP and a 3-minute visit to the pharmacy do the trick. Sometimes though, it gets exhausting.

When I rang the GP last week, asking to renew my prescription, the receptionist asked me what medication I wanted to re-order. I gave her the name, and her immediate reply was ‘Oh, if it is for contraception, you will need to speak to a nurse.’ No, it is not a contraceptive – my body took care of that all on its own, thank you very much. ‘It’s not. It’s HRT, hormone replacement therapy.’ A pause. ‘Ok, I’ll speak to the doctor about this.’

It used to be a trigger. The reminder that I no longer need contraception used to drive me to tears. Now, I just close my eyes for a couple of seconds and breathe deeply.

I nipped out at lunch today to go and collect it from the pharmacy I have been going to since my diagnosis. I pushed the door and waited my turn. A few people in front of me, a chatty new pharmacist, it took longer than usual. Since I am not one to make small talk with strangers, I expected that once my turn came, it would be over much more quickly.

I gave my name, my date of birth. And the eyebrows of the pharmacist shot up above his mask. ‘Is it hormone replacement therapy you’re here to collect? Sorry, what was your date of birth?’ I gave it to him again. ‘That’s really young to be on HRT – who have you spoken to about it? Is it your GP or…’

I had just popped out to get my prescription on my lunch break. I was not ready to give anyone my life story.

I get that he was genuinely surprised. After all, it cannot be often that a 28-year-old woman comes into his pharmacy asking for HRT. But the way he said it, it felt like my right to get HRT was being questioned. I felt the need to justify myself, and so I did, feeling terribly uncomfortable whilst uttering the words. ‘Yeah. I had cancer, I had surgery, and I’m now on HRT’, I said it as quietly as I could, mindful of the people who had come into the pharmacy behind me. ‘But did you speak to your GP only, or did a gynaecologist…’ He was not being as careful as me, his voice was strong and loud. ‘Yeah, I went to a specialist menopause clinic.’

I was annoyed, I was ashamed. I am open about having had cancer, but it is my story to share. I write about it on this blog, I tell my friends about it, I have opened up to more people than I ever thought I would, and it is my choice, I do it in my own time, when I feel like it. At 13.20 today, out on my 30-minute lunch break, I was not ready to discuss it. And I was not ready for the people in line behind me to get front row seats to my life story. But I was forced to do it, because of his questions, because of how insistent he was, because I did not have the energy to stand up for myself.

He went to the back to fetch my prescription. From there, he shouted: ‘You are not also taking the patches, are you? Because sometimes they can interact and…’

‘No.’ Just let me pick up my prescription and go, please. I did not say that, but I wanted to run out of the pharmacy and back to the safety of my flat.

‘Ok, so here it is. What dosage are you on, oh, it’s two pumps a day, isn’t it. Oh yeah, I can see there it used to be one, and now it’s two, the prescription was updated… Oh, do you pay for your prescriptions, or do you have an exemption?’

I was about to say I was exempt, when he interrupted me again: ‘Oh, of course, if you had cancer you must have a medical exemption certificate. Let me check, yes, we have it on our system, valid until 2025!’

And once again for the people in the back?

I am a private person. When I decide to open up, it has to be on my terms. When I muster up the courage to tell people I have cancer, it has to be my choice. When I resolve to explain what treatment has done to my body, I want to be in a safe environment, not in a pharmacy, in front of strangers. Even the 6-feet rule does not prevent anyone from hearing what is said loud and clear by an over-enthusiastic pharmacist.

I could not have run out of there any faster. I signed my name at the bottom of the form, ticking the ‘medical exemption certificate box’, took my prescription and made it out within seconds. Was I rude? Maybe.

Mostly, I was shaken. Within ten minutes, I had felt judged, exposed and patronised. I do not need my health, my private life to be discussed in front of strangers when I am picking up a prescription. The people behind me could have been anyone. They could have been my neighbours. They could have been clients, they could have been colleagues. I felt naked, which is pretty incredible considering I was wearing two jumpers, one on top of the other. I felt like I had no control. I started shaking.

I know hearing about my case might surprise some people. They might have questions, they might have opinions. They might want to discuss it at length But it is my life, and I will share it according to my rules. Maybe tomorrow I will pop by the pharmacy again and give that man the link to my blog. If he has any questions, there is a time and place for them.

It is my cancer, and I have earned the right to control my story.

Reclaiming My Body

Surgery took away some of my organs. I lost the hormones I had relied on for years. Cancer started, and spread inside of me for months, possibly even years, and I did not notice. How can I trust this body? How can it ever feel like mine again?

Womb cancer, or endometrial cancer, happens most often in older women who have been through menopause already. The most common sign that something is wrong is unexplained bleeding. Because I was only 27 when I was diagnosed, I attributed any bleeding to irregular periods, which I had had ever since I first went on the pill as a teenager. I had flagged this up to a gynaecologist before leaving Paris back in 2014, and I had been told it was no cause for concern, it was quite common actually. It would take years for me to bring it up again with a doctor, which prompted a series of tests which eventually led to my diagnosis. Along from bleeding, some women with endometrial cancer also experience pelvic pain, which helps them realise something is not quite right. I never felt anything.

I have always had a high pain threshold. And I mean, very high. I once knelt on push pins that had fallen to the floor (I was a messy kid), and only noticed something was wrong when blood started seeping through my jeans. I played tennis with damaged ligaments, and only went to A&E after my foot turned blue. I could put my hands over a hot plate and not feel any pain.

After my hysterectomy, I did not need any painkillers. In the hospital, I only asked for them once, in the hope that they would help me sleep when the constant beeping of the machines kept me awake. When I was discharged from the hospital, they gave me a large box of codeine tablets, to take whenever I was in pain. They are still in my bathroom cabinet as I write this post, ten months later.

Now, I cannot help but wonder if my resistance to pain prevented me from seeing something was wrong. Had I felt pain, maybe I would have gone to the doctor earlier. Maybe they would have recognised the signs, maybe I would have been diagnosed more quickly. It would not have changed much – luckily, my cancer was caught at a very early stage anyway. But you cannot help but wonder what if, and blame your body for betraying you.

When someone gives you the unexpected news, so many things go through your head as you try to process it. So many feelings, some of which you can describe, some of which you have no words for, as you have never felt them before. I had this thought though, this disturbing but unrelenting idea that I did not know my own body. After all, cancer had been developing inside of me for months, maybe longer, and I had had no idea. Something sinister had been happening inside my body, something was growing and spreading, and I had not been able to tell.

You cannot see your womb. There is something incredible about your existence being threatened by a part of you you cannot even see. It is a silent, unnoticeable threat. There is nothing you can do about it. You cannot locate the cancer in your body. You cannot pinpoint the exact spot where something is happening. For someone like me, who likes seeing and experiencing things first-hand in order to understand them, it was mind-boggling.

I have never had the best relationship with my body. I have put it through hell, I have gone from one extreme to another, I have hated it at times. But that was the last straw. I had no trust left for my body. I had been betrayed by a part of me, by cells and organs that made up who I was. For the very first time, I realised I truly had no control.

Treatment only made that worse. Surgery is hard on the body, in many different ways. For me, it was the only real option if I wanted to live. So I accepted it. I was peace with it. But still, it felt like it was being forced on me. My organs were going to be literally ripped out of my body, and I had no say in the matter. Was it even still my body, since I could not control what was happening to it?

After surgery, I struggled physically. So many things I used to take for granted, I could no longer do. Small things I was not allowed to do, like lifting a kettle or bending over to tie my shoes. Sitting up without using my arms, which my body now simply refused to do.

The loss of hormones which accompanied the removal of my ovaries did not help. Suddenly, I would find myself crying, and unable to explain why. I would feel weak, I would feel hot. I had headaches which lasted for days. I had strange pains in my muscles, my body was doing its own thing, I would wake up cold and drenched in sweat. I would feel hungry, and then could go days without eating.

To get through it, I detached myself from my body entirely. I convinced myself that my body was going through something, but my mind was on a different path. My body was weak, it was diseased, but my mind was going to be fine, it would stay strong.

It is freeing, but it is also terrifying. There are days where I look in the mirror and I do not recognise what I see. Where I cannot make the link between my body and the image I have of myself.

I am working on it. I am now aware of every single thing that happens in my body. A twinge here, a tremor there, I am conscious of everything, but I cannot tell what is causing it. There is a disconnect between my mind and my body. I overreact about every sensation in every part of my body. If I was not able to tell the signs the first time around, I should now try and listen to every signal it is giving me, should I not? I feel afraid of my own body, of how it could be letting me down at any second.

But it is my body, and I hope to have it for many years to come, so I have to reclaim it. I have to make it feel like mine again. I might not have been in control of what happened to it a year ago, but I now hold the reins of what is left of it. I keep experimenting with my hair, because I feel lucky I was able to keep it throughout the last year. I cut it, I shave it, I bleach it, I dye it. It is all mine. I got a new tattoo, I have plans for more. I did not choose the scars on my belly, but I get to choose these ones. From now on, the marks I make on my body will be all mine.

I barely flinched when getting my latest tattoo, but I felt it. It was a slight pain, a twitch in my arm, but I felt it, and it was amazing. I knew where the pain was coming from, what was causing it, and I was the one who had made that choice. I had control. I could have stopped it at any moment. My body and my brain were connected for a while, and it was my own doing.

It is both beautiful and terrible. You should not have to cause yourself pain in order to reconnect with your body. For months after getting that tattoo, I kept tracing the raised lines over my arms, the scars which were giving me comfort. When they disappeared, as the tattoo finished healing, I felt a deep sense of loss.

I have taken to wearing different clothes. I used to always be hot and wear short sleeves. Now I wear huge jumpers, just to feel warmth around my body, to surround it with something I can touch every time I move. I wear trousers, when I always wore dresses. You can feel trousers against your skin, you can feel your body moving with them, straining against them as you change positions. I wear rings every day, just to stay aware of my fingers.

It is not an easy road. I do not make these decisions on purpose, all the time. It would be exhausting. I think my brain found a way to tell me what my body needed, without me being aware of it.

I need to listen to it. To all the signs. I cannot understand them, not yet. Every feeling, every sensation that I do not control causes fear. But I have a support team. I have a nurse who I can call when I am worried about symptoms. There are doctors who can tell me what is happening, who can reassure me. It is normal. My feelings are normal, my reactions are normal, my body is normal again, as far as they can tell.

It will need some getting used to. I hope one day, I no longer need people to help me understand my own body. But in the meantime, I will keep on learning to take care of it, so that we can support each other, me and this body that I am reclaiming.

The Post That Started It All

Although I have always loved writing, I had never thought of writing a blog to share my experience. One the eve of the one-year anniversary of my diagnosis, I decided I wanted to share my experience with people, and wrote and shared a long facebook post. The response I received was overwhelming. People reaching out, comments about how much they related, how much they appreciated that I had shared that with them. I realised that not only had sharing this post lifted a weight off my chest, but it had helped others as well. And overnight, the idea to start a blog came to me, and I decided to make the jump. The post below is taken from the message I wrote on that night, the 14th of October 2020.

If you know me, you probably know I am not a fan of feelings.

They are unpredictable, they are messy, they make you vulnerable, they are overwhelming. I am uncomfortable experiencing them, let alone talking about them or sharing them on facebook.

I have been thinking about it a lot this past year.

A year ago, if you had asked me where I would be in a year, I probably would have given you some positive, commonplace and deliberately hopeful answer, like ‘oh, I hope I have my life together, a good job, a boyfriend, maybe a new flat, I will have made some progress with my writing, started a small calligraphy business, who knows.’

Well, let’s be honest, it turned out slightly differently.

Tomorrow morning, I will wake up and it will have been a year since I was given a diagnosis of cancer. A year since I first cried in front of friends, family, and strangers (I will make an exception for all those times I cried when I was drunk before – it does not count), and since I started doing it most days, because it is often the easiest answer to the question ‘how are you doing?’. Crying is not a feeling, and it is all my feelings at once.

I truly thought that when the dreaded one year mark would come up, I would be feeling all positive, ready to put it all behind me. After all, the prognosis was extremely good, the operation went well, I am expected to make a full recovery, recurrence is fairly unlikely.

But then, cancer had been very unlikely too.

A year is the perfect moment to turn the page on everything that has happened. A new chapter, a new beginning, that is what everyone has been saying, and I have too. Only, I have been lying.

I still cry every day, and that is not likely to magically change from tomorrow. I think about it every day, I think about the exact moment, at 9.10 in the morning, when I saw the first of scores of doctors. I cannot remember the name of the surgeon who operated on me, or the nurse who chatted to me whilst I was recovering, but I can remember the name of the doctor who gave me the news, telling me he was not supposed to be the one to tell me, as he had no interest in oncology, that it should have been done differently, not at a routine appointment, that he wished he was not the one delivering these news, that they should have asked for someone to come with me, that they did not because they did not expect it, that they did not even have a specialist nurse available.

I did not cry, even as he explained what the treatment would involve, and what it meant for the rest of my life. I asked if I could call someone. I had no idea who I was going to call. I could not even think straight, but I was obsessed with the idea that I had to save face, that I would not cry in front of him. They set me up in a quiet room with a cup of tea – even asked me what kind of tea I wanted. I took out my phone and without hesitating, I called my mum.

And then I started crying.

I have not stopped. I cry in the mornings, I cry when I make a cup of tea, I cry when I look at my scars, I cry when I think about the plans I had a year ago.

I am not turning the page, I am continuing to write on a scroll that only gets longer and longer, and that is ok too.

I have had the best support over the past year. Friends, family, colleagues, housemates, Macmillan nurses, everyone has been fantastic.

I still do not like feelings. I do not talk about them, but I have started writing them down, in the hope that in the future, I will be able to make sense of them, and help someone else like people have helped me.

I will continue saying I am fine when you ask me how I am doing.

And one day, it will be true.