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My cancer and hysterectomy journey – Julie’s story

I’m not going to post too long a story – believe me this is just the short version (!) and I hope anyone going through a similar experience will benefit from my tale – and my positive outcome.

I was diagnosed in December 2014 with uterine cancer after suddenly starting to bleed heavily in September (hadn’t had a period for about 3 years). Initial diagnosis and MRI imaging were positive and I was led to expect a straightforward op (total abdominal hysterectomy plus ovaries), which would hopefully remove everything.

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Unfortunately surgery proved to be complex; after 3 c sections my uterus wall was very thin and the tumour had started to push through; it had also started to spread downwards to my cervix. My bladder was completely welded to my uterus (again thanks to the c sections) and I was in theatre for 5 hours while my excellent surgeon worked on releasing it. This meant that since he was very concerned that he might have damaged the bladder, I had to have a catheter in for 10 days (I was sent home with a lovely bag strapped to my leg!).

I was in hospital for 7 days and went back to the ward on day 10 to have staples and catheter removed. All was well and my bladder starting working normally right away. What a relief!

My consultant was up front and told me right away that he wasn’t happy with what he had seen as far as the cancer was concerned, and he warned me that I would most likely need to have further treatment. Two weeks later, I returned for the results of the pathology that had been done. This was a devastating day. Although I was told right away that they were confident that all the cancer had been removed, and that the lymph nodes and pelvic wash that had been checked were clear, they still wanted me to undergo a considerable amount of treatment “just to be sure”. The treatment was to be 4 rounds of chemotherapy, 25 sessions of radiotherapy and 3 sessions of brachytherapy (internal radiotherapy delivered directly to the top of the vagina in my case). I was poleaxed; I never thought that the treatment would be so complex.

I had a very low week or two before the treatment started – to be honest the thought of losing my hair was one of the most difficult things, and I know that sounds silly, all things considered, but there you are! My hysterectomy and my lovely planned relaxed schedule of recovery took a back seat, and in fact almost got forgotten about in the haze of appointments for this, that and the next thing! I felt a real fear of the unknown – especially before the first chemo – as I really had no idea what to expect.

I started chemo on 14th February, 5 weeks after my op, and finished all my treatment on 8th July – exactly 6 months after surgery. I was relatively lucky and tolerated the chemo and radiotherapy quite well – I had no nausea or sickness, and only had a few “minor” side effects from everything. My hair came out just after my second chemo, and I am only now, in October, able to face the world without a wig (although it is still very short!).

However the good news is that I feel great! I have got all my energy back, have got over most of the “niggles” associated with the treatment (apart from a slightly temperamental bowel!), and best of all have been told that I don’t have cancer and am in remission. I am feeling very positive and determined to move on. At the time, the 6 months of treatment felt like a never ending nightmare, to be brutally honest, but looking back now, it feels like the time has flown by!

I hope anyone in the same situation will take something positive from my story – there is light at the end of the tunnel!

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in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

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Linda Parkinson-Hardman

Transformational coach and founder of the Hysterectomy Association. Professionally I'm an information scientist who specialises in the adoption and engagement of digital technologies. I am a writer and author of nine books to date, and I've edited a further seven; phew what a lot for a Thursday afternoon :-)

This Post Has 7 Comments
  1. Hi Julie

    Just like to thank you for your story. It has helped me make a decision. Perhaps after treatment I can be as brave as you and write it all down. Thank you again.

  2. I am so glad that you posted this. I too had uterine cancer July 2015, fortunately grade 1. I was also post menopausal and had a very tiny bleed. As I was due a cervical smear I actually went to the GP instead of the practice nurse. I was fast tracked, seen within the 2 weeks but was not operated on for another 3 week. Due to other chronic health conditions I had a 2 day stay in HDU before going to the ward. Thankfully I did not require any further treatment and have just had my 1 year anniversary. The really “spooky” thing for me was that my elder cousin by 9 month had the exact same thing 11 month previous. She is doing well too. Also a newish friend revealed that she had the same thing about 10 year ago. My district nurse who came to see me told me her grandma had this and she was still alive at 90 some 30 years on. Lets share our tales of survival and spread hope. Thank you

  3. Dear Julie

    I’ve just read your story and felt compelled to write and wish you all the best. You sound like real fighter who has not been phased by all you have been through . I had a hysterectomy and partial oophrectomy this year at quite a young age (40) but it was an easy decision for me based on the pain I had suffered for years but I can’t imagine six months down the line that I would have had the strength to go through all that treatment in addition . So I wish you well and send you my best wishes , Louise x

  4. Sorry to hear you have had such a rough ride Julie. All sounds very positive now. Thank you for sharing your experience & giving hope to others Best wishes for the future!

  5. I am gkad you are in remidsion .I was diagnosed with cancer in April this year and I found out on a Friday and was in having it all removed on the Tuesday no further treatment needed just the usual check ups .I was fine at the time but for the past 3 months have been very emotional I cry for no reason And feel like I am losing the plot some days

  6. Thank you Julie for your story, it could not have come at a better time for me. I’m waiting to go for my final chemo session this afternoon after having a full hysterectomy in May. I was feeling quite down, even though like you I have tolerated it well (luckily no hair loss). I shall keep your comment about there is light at the end of the tunnel in mind and hopefully it will come soon!

  7. You’re truly inspirational; your zest for life really comes through in your letter. You’ve had a very difficult year but are focusing on the positives, good for you. So glad to hear you are feeling great. Very best wishes for the future. x

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