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Doctors Are Not Always Right – Caroline’s Story

Doctors are not always right – Caroline’s story

My experience began with a blood test as I was post menopause and started bleeding. The blood test had a high ca125 reading, never heard of this before but could be an indicator of ovarian cancer I was told. This was Xmas eve.
Went for different scans, tests and 3 months of waiting and was told I had a 16cm mass on ovary.

I couldn’t tell if cancer or not until come out. The shock took my breath away. No other symptoms,I always thought I was a strong woman but this floored me, even had to take time off work as it filled my head every waking moment.

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This seen me booked in for a total hysterectomy, vertical incision in order to get the mass out in one go. Hysterectomy booked for 25th March.3 weeks from when told had mass. Went back to work and tried !! To forget about it, told very few people as I felt guilty? About me having possible cancer! The run up to op was one of the most stressful moments of my life. I was petrified, even though surgeon, friends, family said I would be ok it was not them this was happening to

Day of op was like I was having an out of body experience and I was quite calm, I had already spoken to anaesthetist and informed him my greatest fear was going under and being sick afterwards, he advised I could hold the mask over my face myself and to have an epidural as well as general so I would not need morphine after, with the hope would be less sick. I would highly recommend this as was only sick once and was pain free for two days! I was still extremely anxious right up until the point I was actually in the anesthetic room and was just about to have meds put in. I said whoa, then thought get it together, took a deep breath and next thing I know I was coming around. I can honestly say the build up to it is far far worse than the actual procedure.

Got out of bed next day, walked around ( with Gucci catheter in hand😂). Doc came around and showed me picture of mass and informed me 80% sure it was cancer, only told my husband, again felt guilty inflicting this in him.

Had shower next day and awaited the wind and bowel movement. Tried everything going, peppermint tea, mints, tablets – no wind. Was told could not go home until passed wind. Belly like a balloon ! Day 4 staff gave me a suppository. Passed wind but no bowel movement. Went home👍🏻

First couple of days fall asleep mid sentence, slept upright, waddled around house, however after two days got myself into routine, getting dressed, out of pj’s in day, walk to end of street. I had downloaded films, books etc but could not concentrate for any length of time, even holding a conversation was sometimes difficult!

On day 5 after discharge had first bowel movement. Omg worst thing of whole experience. But after the first one back to normal, however when weeing, even now, 5 week post op, only know I’ve stopped, cos it’s stopped, no sensation of stopping.

District nurse called every day to change dressing g then had an infection. So still calling twice a week now
Mood swings terrible can find myself crying for no reason.

Now at week five, I’m slowly getting there, can walk further, go around the block a couple of times a day. I’m sure my neighbours think I’ve gone mad! Still struggle getting up and down from sitting. Don’t realise what you use your tummy muscles for until you can’t use them. If I do too much I get a dragging pain and a hot stabbing pain, problem is you don’t know you’ve done to much until after you d done it. My head rules my body! Tells me to do things, like catch a bus, then body says shouldn’t have done that and then two days on sofa.

Had consultant appointment last week and good news, everything benign, I honestly felt like this cloud hanging over me for the last three months had lifted! Then I feel guilty because I’m still moaning about being in pain and recovering.

My top tips would be:

  • Ask for epidural, if possible;
  • Be dust blind and accept any offers of help;
  • Buy a grabber to pick things up and a small step if shower over bath, a god send and cheap on amazon;
  • Buy a v pillow,again cheap on amazon. Used mine to sleep upright first few days then pulled out straight and if put between legs and sort of lie on it can now lie /sleep on side(bliss)!;
  • Walk as much as you can;
  • Be kind to yourself, there will be good and bad days, but just count each day as a day towards recovery.

I also had a dvt prior to all this which I was told was actually a cancer dvt as mass was restricting a burn, so now gave to inject twice a day for 6 months, and can’t drink 😩 But hey things could be a lot worse.

Hope whoever reads this recovers well xxx

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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 :-)

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