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When I told people about my experience of being taken into hospital in April with severe abdominal pain so many of them told me that I must have been scared. Having an ambulance sent out to me at 3:30 in the morning, being alone, having waves of crippling pain course through my abdomen every 30 seconds, laying alone in a room waiting for pain medication that wouldn’t be effective must have been so scary. In truth though I was never scared; I was convinced that I was overreacting and that I’d be told they couldn’t find anything wrong with me and be sent on my way. I believed this even when I was left in the middle of A&E, crying, “Ow!” out loud, toes curling in pain and banging against the sides of the gurney because the pain was so intense that I didn’t know what to do with myself. When my mum came to see me and I told her what I’d been doing she told me that “nothing is painful enough for you to need to make any noise,” and I felt instant shame at my actions.
When I was taken through to radiology for an ultrasound I was in still in just as much pain but I kept silent and stuffed my knuckles in my mouth to keep myself from crying out loud. A nurse asked me if I was feeling sick and when I explained that I was in intense pain she asked if I wanted to return to A&E to get my pain under control before I got my ultrasound. I’d been waiting 11 hours for my ultrasound at this point so I very firmly told her I just wanted to know what was wrong with me, and I gritted my teeth while they gave me an external and internal ultrasound. The pain at this stage was at the point that I felt disconnected form my body and I just wanted answers. Being told that I had a giant cyst on my right ovary was practically a comfort because it validated my pain and confirmed that I’d done the right thing.
Overnight on the ward my pain came back with a vengeance and morphine didn’t even touch it. I laid in my private room, back to crying out loud repeatedly and desperately wishing to be pain free as staff looked at me with pity. While lying there alone in that room, I was never scared of what was happening or at the possibility of surgery; I just wanted it sorted out.
I tearfully begged the surgeon to perform keyhole surgery but the cyst was too big so I had to be cut open. The cyst was 15 cm in size and twisted four times (ovarian torsion), and there was 1L of fluid in my abdomen—how did I not know this?? I woke up in relatively little pain compared to how I’d felt before and I made it abundantly clear that I was not staying another night in hospital. My parents had flown to Spain while I was in surgery so I lied that I had someone to look after me when I got home and I had no intention to ask for help; I was fine and could cope alone.
Four weeks after my surgery I returned alone to the gynecology clinic for my follow-up, fully expecting that I would be told that everything was fine and that would be the end of it. When the nurse asked me if I had brought anyone to the appointment with me before I saw the doctor I should have known there was something wrong but I was uncharacteristically positive that all was fine. As soon as my doctor said, “I don’t have good news, I’m afraid,” I knew I had cancer. As she talked to me about it and how they hadn’t expected it, I felt like I was a million miles away from the room and I barely registered what was happening. Ovarian cancer in women under 50 is very rare so no one expected this to be the outcome.
Coming out of the appointment I rang my mum who was in The Maldives and when she asked me if I was alright the only answer I could give was, “I don’t know.” Other than being shocked that I had cancer I had no other feelings about it at that point.
10 days later I was back to see my doctor, this time expecting to be told that they’d want to remove the offending ovary and possibly give me a round of chemo, which was fine with me. But no; they wanted to remove both of my ovaries as soon as possible. I told them that if they were taking my ovaries then they may as well take my uterus and cervix too as they would be redundant. I was told that they you need to remove the protective fatty layer that covers my abdominal organs and they would need to use a vertical incision so that they could check all my other organs for signs of cancer. My surgery was booked in for 10 days later.
Other than being angry, I didn’t really have many emotions about my situation. I wasn’t scared of having surgery, I wasn’t sad about losing my ability to reproduce as I’ve never wanted kids, I wasn’t upset about having cancer; I was just fucking angry. I was angry that I’d have to be off work for longer, I was angry that I’d have to be off skates and exercise longer, I was angry that I was losing my holiday, I was angry that my tattoo artist refused to tattoo me despite having hospital approval, I was angry that I was going to be financially screwed over, I was angry that my life was getting fucked up.
The surgery was a success, other than the unbearable pain upon waking and the five hours it took for them to get my pain under control. My time in the hospital was relatively uneventful and I had a wonderful slew of visitors to keep me company. I spent a month after my surgery at my parents’ house, being somewhat looked after by my mum and hating the limitations put upon me by having had surgery.
When I went for my post-op follow up I was told that no more cancer was found and so no further treatment was needed. My mum cried with relief while I felt nothing but rage because to me that meant I didn’t need the hysterectomy; there was no more cancer so I would have been fine. I regret not having demanded an alternative to having the surgery because it has cost me so very much.
I came to realise that, to me, being a woman was being able to reproduce and having the choice not to, so losing that ability and choice made me feel like I wasn’t a woman anymore; what man is going to want a woman that is damaged goods? The fact of going into menopause at 32 makes me feel physically sick every time I remember it’s happening; menopause is an old woman word, not something to describe someone my age. Every time I have a hot flush I am reminded of what has happened to my body and the only way I can quantify the feeling is as shame. It makes me feel disgusting on so many levels; who’s going to want a woman who’s already gone through the change? The damage to my body is possibly the worst part for me; my stomach is swollen and scarred, and looks like a butt. I don’t know what is fat and what is swelling; I have repeatedly been told that the "shelf" caused by my first surgical scar will never go away no matter what I do. I will never be able to get the flat stomach that I’ve been chasing since my obese teens, I will never be able to love and accept my body, I will never not be conscious of the size of my stomach. Who’s going to want to see me naked and actually like it when my stomach looks so revolting?
Something that took a few months for me to realise is what Dr. P Harvey says in his article “After Treatment Finishes—Then What?”
“Whatever your prognosis, whatever your hopes, whatever your personality, the second that you know that you cancer your life changes irrevocably.”
For the rest of my life every time I have a pain, or a lump, or a weird sensation I am going to assume I have cancer again. I never knew I had cancer to begin with so it’s possible that I’ll get cancer again and not know it until it’s too late this time. People tell me that I’m lucky that my cancer was caught when it was, which is true, but it’s hard to feel lucky when everything else has gone to shit since hearing I have cancer.
I never realised how difficult life would get months after getting that diagnosis as it just continues echoing through different areas of my life. People metaphorically crowded around me when I was going through having cancer and surgery but now that I’m struggling so badly that support has diminished because to other people the worst is over but for me it’s just beginning.
My father told me that I should have gotten over having cancer and shouldn’t keep bringing it up. I know that this is a reflection of his own feelings about his child having cancer but in reality it is the cruelest thing anyone has ever said to me and something I doubt I will ever forgive. It has made me feel some shame every time I mention it or post about it because people don’t want to keep hearing about it. I feel like I should hide it and should be alright with it while at the same time knowing that it is nothing to be ashamed of and will be with me for the rest of my life. Cancer isn’t like other diseases; it is not something that sufferers ever really get over because when you’ve had it once the risk of it returning is always there. It is not a defining characteristic of my personality but it is now a part of who I am; I am an ovarian cancer survivor.
I want nothing but to go back to normal; prior to all this my mental health was doing pretty well and my life was in a good place but all that has fallen away again. Because my mental health held fast during my treatment I honestly believed that I would be alright in the long run about everything that had happened; I did not realise that I would suffer more after the fact. I want to go back to normal but it isn’t realistically possible because things aren’t the same as they were before I had cancer and a hysterectomy.
Everything I have been through has led me to lose a large chunk of my self-confidence which is apparently common amongst cancer patients. I feel worthless because I am not coping; I am embarrassed about how tough it is for me. I hold back from telling people the truth of how I really feel sometimes because I don’t want to bore them and my fear of rejection/abandonment is at an all-time high because I do not believe I am worthy of people’s love. I constantly crave validation about everything I am doing or feeling or how others feel towards me; my brain is relentless in its certainty that I am weak, pathetic, unattractive, unlovable and pitiful.
I threw myself into exercise as soon as I was physically able because I want my body back but my diminished fitness, core, strength and stamina compounds the feelings of being worthless so exercising sometimes seems to do more harm than good. Every time I find something hard or get tired I want to throw a full-on toddler style tantrum about how it’s not fair that I’m back at the beginning again. I am constantly comparing myself to how motivated other people are with their exercise and diet, and berate myself for how difficult I am currently finding it to get myself to do exercise I know I enjoy. I should be able to exercise 6 times a week, I should be fitter than this, my body should look better than this. I feel like I will be judged for not working harder or exercising more frequently.
I am finding being back at work very difficult; I think I underestimated how difficult it would be to return after 5 months off and 2 major surgeries. I’m only currently meant to be doing 3 days a week but I still struggle to manage even that. I want to be at home, in bed, most of the time that I am there and it takes a lot of strength to stay and to do the work. I have left after only a few hours on multiple occasions and gone straight to bed but daren’t tell people that’s what I am doing because of the fear that I will be judged for being weak and lazy. I should be able to work and to make myself work harder than I am. I should be a grown-up who is responsible and works as hard as possible.
The most difficult part of everything has been doing it alone. I would have given anything to have someone there to hold my hand when I was in hospital and to tell me that it will be OK. For someone to have been there to hold me, comfort me and talk to me about how I was feeling when it was happening. To have someone to look after me and love me while I was going through the worst experience of my entire life; but instead I did it alone. And now that I’m out of the other side I am convinced that I will be permanently alone because no one is going to want me now, are they? Not only am I ruined physically but I am a needy, pathetic mess who can’t cope with life. I wouldn’t want me either.
Just before I had my hysterectomy I contacted my ex because I knew he would be devastated if he found out I had cancer from someone else. Against my better judgement I ended up messaging with him daily while I was in hospital and then for nearly two months after my operation. I became increasingly emotionally reliant on him and longed to ask him to come to see me but I didn’t. we got to the point that we were messaging each other even more than when we’d been together because I knew I could talk to him about everything; that man has seen the best and absolute worst of me and still loves me. Then one day he made a comment about being stressed due to something related to BDSM and I lost my shit at him. How dare he mention that he was involved in such things to me given my situation? How dare he even think about other women? I ranted at him about what he’d said and that I felt like he was rubbing all the things he has achieved since we broke up in my face. He had all these amazing things going on and all I had was fucking cancer. Of course he didn’t take kindly to my rant and reminded me of all the awful things I have done to him in the past. It was then that I knew that our ‘friendship’ had to be ended because he could never be what I wanted him to be and having someone remind me of the worst of me was not going to do me any favours. He accepted my choice to end our communication and it took me weeks to get over not having him to talk to anymore. I felt like we’d broken up all over again and I was back to being completely alone.
When someone I know passed away from a brain tumour just over a month ago it hit me a lot harder than I could have expected. Not only was I devastated by his death and for his family but I was wracked with guilt over the fact that he had a family and died, yet I have nothing and got to live. How is that fair? How is it fair that I just had to have an operation to cure me when other people have to go through chemo and radiation? I am an imposter of a cancer patient and got off lightly compared to most, and yet I am a huge fucking mess at the moment which just seems ridiculous.
My illness may now be over and I may be cured but there is no relief with this because now I have to somehow rebuild my life and myself all over again, and I don’t have the strength to do that right now. I have been left so extremely emotionally vulnerable and am finding it very difficult to look to the future. I will keep trying to move forward but please bear with me, and if you can, reassure me as much as possible and maybe I’ll start believing it.