Scars, Stares and Silence: A Summer of Self-Consciousness

They are angry.

Purple, raised, asymmetrical.

Shockingly dark against my pale skin.

Four marks on my lower abdomen, a sort of connect the dots drawing a rather crooked X pointing to the source of my shame. A treasure map leading to emptiness.

They are the visible stigma of my ordeal, the proof I am not whole. 

My hysterectomy scars.

I trace them with my fingers, often. The one on the left, slightly more raised than the others. The one on top of my navel, long and thin, the one that took ages to heal.

I refuse to look at them. I do not know why, considering I have no problem exploring them with my fingers.

But I will not look down. I will avert my eyes in the mirror. I will cover them up so I do not have to inadvertently see them. 

But others do.

I have been very careful not to show them to anyone. I have gone swimming daily since the spring, and I always wear a full-coverage one-piece swimming costume that keeps them hidden from view, concealed from strangers. No-one can see them, no-one suspects a thing.

Until yesterday.

The much expected and much dreaded family holiday started, complete with extended family time, lazy afternoons by the swimming pool and games nights.

I knew it would be too hot for my usual swimwear (and also, no-one wants a racer back and swimming shorts tan line), so I went on a hunt for the perfect bikini before I left.

I was not concerned with finding something flattering as much as I was with making sure it would cover as much of my scars as possible.

I thought I had done pretty well. All in check, except the one above my navel, which still peaks out from all the high-waisted bikini bottoms I could find, a few centimetres of raised, uneven skin.

I somehow thought that it would not matter as much, because I was with family. Family are respectful. Family would not stare like strangers would. 

But they do. And worse, they know what caused the scars, and yet they still stare.

My mum in particular. And it hurts.

It hurts when her eyes will not leave my stomach. It hurts when she will not say a word about it. It hurts when she will look at my scar every time I get in or out of the pool. It hurts because she is uncomfortable with my scars and my body and makes it obvious whilst also not bringing it up.

I never used to be self-conscious much, but cancer has changed that. I did so much work over the last few months to try and get more comfortable with my situation and my cancer-survivor body, and it all got wiped in the blink of an eye. More like, in that second they refused to blink and look away. But also refused to engage and bring up the truth.

No-one has said a word about cancer.  About my recovery.

I am seeing extended family,  grandparents, aunts, uncles for the first time in over two years. Last they saw me, I had not even been diagnosed.

And now, it is being ignored. Swept under the carpet. If we do not ask questions, it does not exist, does it? No-one asked how I was doing. Where in my recovery I was.

But they stare, and that leaves me feeling both ashamed and lonely.

Either stare and bring it up, or avert your eyes and stay silent.

I will feel uncomfortable either way, but at least I will have someone to share that discomfort with if you say something.

We do not talk enough about the mental load associated with cancer and making people comfortable with it.

Having to take that first step. Forcing people to acknowledge the fact that it exists, when I myself am not comfortable with it. I cannot ignore it like you can. You bring it up by constantly staring at my scars, you should at least offer to take some of the load off.

It should not be up to me to ease the discomfort you make obvious, but also refuse to bring up.

***

At least that has given me an idea for my next few posts: mental load , loneliness and selfishness in cancer recovery.

Searching for Answers: Looking for Someone (Else) to Blame

Blame is an interesting thing. It comes and goes, it tries to find a target and when it does not find one, it latches onto you and refuses to let go.

Ever since my diagnosis, I have been looking for an explanation. A clear, scientific reason, something to put my mind at rest. A definite answer: this is what caused your cancer. Your genes are faulty. It is hereditary.

I am not someone who believes in coincidences, in things happening at random. I don’t believe in destiny, in the universe, in a higher power causing things to happen.

I believe in science, in clear and cut answers, in data and analyses.

Womb cancer is caused by cells in the lining of your uterus (or the muscle, in some rare cases) mutating and replicating to form a tumour over a number of years. Womb cancer develops slowly. What causes those cells to mutate? Usually, exposition to excess oestrogen over many years is the main factor. This explains why women who have been through menopause represent over 75% of those diagnosed with womb cancer, and only 1% of cases are discovered in women under 40. Time and age are the main risk factor, although people with a family history of womb cancer and specific gene mutations are more at risk of developing cancer at an early age.

There are risk factors that make it more likely to develop womb cancer, factors which all increase the levels of oestrogen your body is being exposed to over the course of your lifetime: being older (the older you are, the longer you have been exposed to oestrogen), being overweight, having never had any children, starting your period at a young age or undergoing menopause late, having polycystic ovary syndrome, having diabetes. On the other hand, taking the combined pill for over three years is thought to lower your risk, and so is having children. No one reason in itself means you will develop womb cancer, and even a combination of those risk factors might not lead to cancer later in life.

I was 27 when I was diagnosed. I was overweight, I had PCOS. Both of those are risk factors – but they cannot explain why I had womb cancer at such an early age. In addition, I had been on the combined pill on and off for about ten years. I did not have any children, I do not have diabetes, I have no family history of cancer, and genetic testing showed no genetic mutations known to increase my risk of having any type of gynaeological cancer.

The doctors were puzzled. I remember the looks of shock, the disbelief on their faces. The times I was told that the results of the biopsy had been completely unexpected. When I was told there was no way it could be cancer at my age. The trainee nurse who looked after me after surgery, and was absolutely overwhelmed when I told her why I was there. She was my age.

And I was told there was no explanation for it. It just happened. Randomly. As it stands, science cannot provide a definite answer.

I hate it.

I hate not knowing. I hate it, because I can only continue searching for answers.

In the meantime, I can only blame myself.

I wake up in the morning angry at myself. Feeling guilty. Feeling like it is all my fault.

Feeling like I deserved it.

Blame is powerful. It started impacting all aspects of my life. I am angry at myself, I am disgusted at myself, I am scared of myself.

It has affected my self-esteem. I struggle to feel pride in anything I do – I just feel like no matter what I do, it does not matter. I failed myself in another, much bigger way.

Compliments make me feel awkward. People do not know how much I am undeserving of their praise.

I cannot fathom why people would want to hang out with me – I personally would not. Look what I did. Look what I caused. I am a failure and so is my body.

The only other entity I can blame is my bad karma. Let’s be honest, I have never had the best luck in the world. So these days, when I want to keep things light and make myself feel better, I tend to blame anything that happens on my karma. Cancer? Bad karma. How my operation was cancelled the first time around? Bad karma. Got burgled a month before my diagnosis? Karma. Got all my parcels stolen in my building for months, when others stayed untouched? Karma. Strong side effects to my covid jab? Karma. Wrong vaccine batch? Karma.

I do not really believe there is anything to it, but it takes the blame away from me every now and then. Pretending there is something else at play here allows me to breathe a little bit better.

I will not stop looking for answers though. I continue looking at all my leaflets about womb cancer, I read studies, I stalk the forums about womb cancer, hoping someone will have missed something. I might be in denial.

I was told that I should undergo genetic testing again in about five to ten years. Science evolves, and even though nothing was detected based on the current available science, there might be something at play here that we have not discovered or identified yet.

I am holding out hope. It seems strange, to be hoping for something to be inherently ‘wrong’ with your genetic make-up. But at least it would be the beginning of an answer. Maybe that way, I would be able to turn the page and focus on the future.

I know I am not the only one. It is common, and to the people living through the same thing, I want to say: science will evolve. It might not be the case for me, in my lifetime, but I will be the case the case for other cancers, other genetic mutations. Some of us will get answers, and some of us will not.

Well, with my luck it’s not gonna be me, is it.