Cancer,  Health,  Mental Health

My Hysterectomy Broke Me

This isn’t the kind of post I’m used to writing. Despite trying to be honest about my experience I’ve always tried to find the positive in it too. Even in terms of having cancer itself I’ve been thankful it has given my girls a chance to really know their grandparents, that I have become more fearless in my pursuits and such. But, if I have come to learn anything in life, it is that the right path is oftentimes the harder one to walk and this completely rings true of that. This path, having cancer, is the hardest path I have ever walked and its beginning was particularly traumatic for me.

I have never been able to really “get over it” and in my sessions with my psychologist she has identified this part of my journey as a bereavement and I think she is right. I am definitely in mourning when it comes to this part of my life. So, without further ado, let me take you back to the beginning, to the Radical Hysterectomy.

Upon diagnosis I was told that I needed to have a radical hysterectomy, this included having my cervix, upper part of the vaginal wall, uterus and Fallopian tubes, as well as twenty eight lymph nodes from my groin and upper thighs removed. I was also told that this option gave me a chance at a cure.

Because of the fact I could have a chance at a cure this was the only treatment option I was presented with – because it was the best option for me and definitely the right one. Yet I became so angry I wasn’t presented any other treatment options, that I wasn’t given the choice. Why? Simply because I was twenty nine and not wanting to face the prospect of losing my fertility.

I had all this anger and I didn’t know what to do with it. I found it so hard to control and I took it out on the doctors diagnosing me and planning my treatment, because that is where it was easiest to direct it. After all, I had done everything right, gone for my smear tests and still here I was. They became the embodiment of the NHS which at the time I felt so strongly had let me down. Here I was at twenty nine years of age and not only had I gotten cervical cancer but now that the worst had happened, here they were short changing me on my treatment options and to add insult to injury that treatment option meant me losing my reporoductive organs, my fertility.

“If they’d let me choose I’d find this all so much easier to swallow”

I cried to my family, and maybe I would have but we will never really know. My world was spinning out of control and I was doing anything I could to claw back control. A very good friend of mine once described it like being in a snow globe only all the pretty floating pieces are your life and you are running around trying to grab onto them all before they fall onto the ground, crushed beneath you.

It wasn’t rational, it wasn’t even right. The treatment plan they gave me was the only true shot at a cure that we had. So with that being said: I can never be too clear about the fact my doctors did everything they believed to me in my medical best interests, giving me the best chance at never seeing this awful disease knock at my door again. I can at least, despite the hurt, now see that.

It’s funny, because after my youngest daughter was born I was keen to tell everyone how I didn’t want anymore and two was it for us. Lost in the newborn fog I thought I really meant it. Then the cancer crashed into my world and suddenly I knew that in my heart, I wasn’t done, I wasn’t totally complete. I adore my girls, they were, and still are, shining unmoving beautiful stars in an otherwise bleak and stormy sky, but truthfully there was another spot in that sky for a star. I wanted another baby and now that chance had been lost. Suddenly I felt bereft, missing a baby I would never have or hold or would even exist.

Tom tried to keep my spirits up, reminding me I would still have my ovaries and that potentially surrogacy could be an option for us. I loved him for that, it made me feel less like it was completely lost, for a little while at least.

Then we were left to wait. We needed a date for surgery and the one we got no one was happy with. Pencilling in the 20th of February, we waited for word from the hospital as the surgeon promised to bring it forward. We waited for a phone call about the date and it felt like it was never going to come. Then one day a letter arrived informing me my surgery would now take place on the 1st of February. He had shaved 20 days off, yet it still felt so far away.

I was a whole mix of conflicting emotions, desperate not to have the surgery, to lose my womb, but also so utterly desperate to have it. I felt like I had a foreign invader inside me that I was desperate to get out. What if it spread in that time? What if it grew? What if, what if, what if just going around my mind. Then suddenly came a phone call. My surgeons secretary was phoning me to let me know that he had gotten me onto a list on standby. Tomorrow I would receive a call to let me know if I was to come in for surgery or not. I took down the details and thanked her, hung up the phone and felt my anxiety go into overdrive.

The surgery itself took place on the 25th of January 2018. I met the team one by one before I went in. My surgeon asked me how I was feeling, I told him I just wanted to go home, because I was utterly terrified. I wanted to be back in my old single bed, in my room, in the house I grew up in watching friends on VHS on my TV/VHS combi telly.

Fortunately, the anaesthesiologist recognised my anxiety and allowed Tom to come with me to the room where I was put under. He held my hand all the way there and until I fell asleep. He was the last face I saw before my eyes closed and it was an incredibly hard moment, I imagine he found it just as hard as I did. There was so much riding on this surgery, by the time I came around we would know if my cancer had spread to my lymph nodes or not, if I needed more treatment or not. I went under with a weight pressing down on me from above and when I awoke, the deed was done, I was tumour free and wombless.

I opened my eyes and saw a clock above me telling me it was 8pm. I had undergone eight hours of surgery. But what about my lymph nodes? I asked the nurse and she told me a doctor would be by to let me know soon now that I was awake. It must have been just a few minutes that went by but they felt like hours, before a doctor came along who told me the magic words:

“Your lymph nodes were negative, they showed no trace of cancer”

Thank god, I thought, and made promises to whoever would listen above me that if they just let me get through this I would never want anything more than my family again. I just wanted to be there for my kids. I was wheeled to my room and saw my parents and Tom, they were as relieved as I was.

This was my first real encounter with morphine, I had been put on a pump to help with the pain and all I had to do was press a button and I could feel the cold liquid seeping in through my cannula and the pain slip away. After a while though it became too much and fuelled my confused, angry and exhausted state to the point that I lost it. I screamed, I shouted and swore at doctors, my parents, Tom. I sobbed. They took me off the pump that night and I had to rely on oral medications. Fortunately, the pain didn’t last too long and I was able to rely on basic paracetamol and ibuprofen fairly quickly.

Then I was discharged, sent home and told to recover slowly and that I would see the surgeon in a few weeks time to let me know whether or not I would need any further treatment. When we attended that appointment my nerves nearly made me pass out and I can’t explain the joy at hearing I didn’t need any further treatment. It was such a pure emotion but it didn’t last long. By the following morning I was terrified. “What if it comes back?” Stuck itself so firmly in my head.

It took a while to really sink in, I remember feeling proud of myself for doing it at first. For surviving it and beating it. But slowly the enormity of what had happened begun to sink in. The loss began to emerge and those darker feelings started to break my heart. I beat myself up for that on a regular basis, I had survived and I should be glad and grateful for that. Afterall, I had two children. I was luckier than some.

Yet I had lost the ability to watch anything with childbirth in it without it breaking my heart, without sobbing real gut wrenching sobs. I couldn’t watch shows like One Born Every Minute anymore, and I certainly couldn’t talk about it. I couldn’t let it be real. So I buried my emotions as best I could, forcing myself to remember why I did it: to make sure my girls had their mum gowing up.

Then we discovered the cancer had returned, that it had become metastatic and was incurable. And now? Now I feel robbed. I sacrificed my fertility for a chance at a cure and it wasn’t enough. If the cancer had stayed away then maybe I’d feel differently now. I certainly wouldn’t be writing this post. But the thing is, at 29 I lost most of my reproductive organs and by the time I am 31 I will likely be in the menopause.

All of my fertility options will be gone. I don’t think I’ve ever felt what that makes me feel before, it takes me to places that are pretty dark. It’s not that I feel less of a woman without them, but fertility is an odd thing for women, and without it I feel strange, kind of lost.

Of all the treatment I have had, even the immune response to the chemotherapy, the hysterectomy has been mentally the hardest thing I have had to endure on my journey so far. I’ll never regret it, it was the only right thing to do at the time, but I’ll never really let go of what it cost me and the pain it caused me.


2 Comments

  • Debbie Brown

    Hi Ellie – no words are enough to say to you at this moment- I had heard what you are going through via the Heathside and Esher ave grapevines – so pleased I have found a way to send you love and all positive thoughts are coming your way from us all . We are now living in Dorset – Sam and Ben both send all love to you and what you are having to go through .
    I had womb cancer a couple of years ago and a radical hysterectomy and cervix and ovaries out . I know what I went through at 60 and for you Its a million times plus worse – if you want to chat I’m here
    debbiesbrown71@gmail.com
    Sending all our love to your hubby , ma and pa as well xxxx
    Debbie , David, Ben and Sam Brown xxxx

    • Ellie

      Hi Debbie – so lovely to hear from you. It’s one hell of a surgery and that’s just the physical side of it. It will always be the hardest thing I’ve ever had to do I think. I’m so sorry to hear about your cancer – it’s such an awful disease. I will keep your email handy and give you a shout at some point. I followed Ben on YouTube for a while, all his adventures look amazing. I hope Sam is doing well – love to you all, Ellie xx

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