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My story of womb cancer by S.A

21/7/2019

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Up until the beginning of this year I was a regular 38 year old woman. Me and my wife were in our own home with a mortgage and feeling like grown ups. We had been trying to start our own family too. 
I had insane periods, like constant heavy bleeding for months. I always seemed to get a second wind when my wife was due on and it seemed that we had synced.
I also had severe PCOS and was diagnosed when I was 17. I had my first period at 12 years old and then nothing really other than maybe once a year until I was in my 30s. 
These heavy periods made me go to the GP several times. They seemed apathetic/uneducated and just treated me several times with transexamic acid. Treating the symptoms and not the cause. 

In February this year I was bleeding so badly I became delirious. They put me on a 10 day course of Noriday so I could have a smear. I was in agony as it felt like as much as it was nice not to bleed, I needed to for a release. I became severely anaemic.
The nice nurse tried for half an hour to do my smear test (I find them intensely painful) and my wonderful nurse who felt awful just said, enough is enough. And made sure from then on my GP took me seriously.

I saw a Consultant who said because I have PCOS, that I’m overweight and the fact that I haven’t had children that there was a chance I could have hyperplasia that could turn sinister. 
She called it even without examining me. She scheduled a hysteroscopy, biopsy and smear test while I was under GA.

The procedure seemed to go ok; one thing I remember was the junior doctor coming over and comfortingly stroking my leg. I kinda knew it wasn’t fab news but blocked it out of my mind. She later told me that they had found discoloured bumps on my vulva so needed to do a biopsy there too. 

I wait for my letter and then one Saturday morning my wife and I are excited to add some springtime touches to the garden when my appointment letter comes. I "what’s app" a photo  of it to my mum and then google my new Consultants name. 

Dr ....... Gynaecologist Oncology specialist.  

I was devastated. My wife told me not to read to much into it but I knew she was worried too.
I walked to my Mums and began to cry, I walk in to find my Mum already crying as she had googled at the same time. I had just under a week until my appointment.

All that week I was worried about what I had; being as I had my womb, cervix and vulva checked. What if it was all 3? The next few days was a whirlwind of anxiety and tears from me and my family. 

As the day of appointment date arrived my parents came with me, as my wife couldn’t get the day off work. 
As I was called in, I met the new Consultant. He started to say my biopsy from my vulva was negative, and then proceeded to say that unfortunately they found grade one cancer of my womb. He explained that usually the treatment is a full hysterectomy.

He asked how I felt and explained that the menopause would be instant and hard to deal with without a natural progression. I was more interested in getting the cancer out. I left the room feeling a mix of devastation but also  positive that I can handle everything and beat it.
I felt a sense of relief that I googled his name as being told you have cancer, getting allocated a Macmillan nurse and being given news of a life changing operation would have been awful if I was blindsided. 

I had an MRI which showed it had gone to the outer part of my womb, but appeared to have been contained there.
I met yet another Consultant, this one was very reassuring. She explained it was her mission to bring awareness of womb cancer, and how she works physically as a surgeon one week and then does research the other week as she is a “womb cancer geek” her words.


I was scheduled for a hysterectomy, however the first attempt was a shambles, with lost paperwork and then me having a giant anaphylactic shock on the operating table despite never having allergies before. I came around from the anaesthetic with my uterus still intact. 
My next attempt was scheduled for a week later. They/we decided it was in my best interest to have the operation rather than wait 6 weeks for an allergy profile.
It happened again, I went to theatre at 10am and woke up at 4pm. This time it was much more manageable as they knew what they were dealing with.

Now I’m in recovery. I had pelvic lymph nodes removed and dissection and a omentenctomy. Which thankfully both came back clear. My wounds are healing, I have huge swelly belly and tam rying to see whether my trunk and thigh swelling is the start of lymphedema. 
I’m still in my journey as I’m about to start 3 rounds of brachytherapy to prevent it from returning. 
Menopause is a bitch but something I’m learning to deal with. 
I’m just lucky that I have a wonderful family and support system. I’m also lucky to finally have the support of a nice nurse that was the only medical professional at the beginning that took me seriously.. 

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    Blog posts about life with womb cancer; by me and other womb cancer fighters and survivors. Plus occasional guest blog posts on relevant subjects.

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