Adding insult to injury – Karen’s Story

I am 50 years old.

In July 2011 my GP found a large lump on my left ovary. While the NHS dragged out the endless tests my body got fed up of waiting! I didn’t even have a date for surgery when, in the early hours of September 20th I woke up in severe pain which rapidly worsened. I was at home alone at the time and called 999. They sent an ambulance immediately and kept me talking on the phone until it arrived about 10 minutes later. By the time I arrived I was lying on the floor with the phone near my ear as I was in so much pain I thought I was going to pass out. I was taken to A&E & from there to the gynae ward where the consultant came to see me, he said “we have known about this for some time haven’t we. Yes I replied. “And it has to come out doesn’t it?” Another yes from me. “Right then, we will operate today” – I got  the distinct impression he wasn’t happy that they had taken so long to get me in!

They performed a salpingo oophorectomy and removed the fallopian tube and lump which they did a biopsy on. 3 weeks later at the follow up with the consultant I was told the lump was a benign tumour which had torted, hence the extreme pain

The surgery triggered the menopause and I had the miseries of the flushes, night sweats, palpitations, panic attacks, severe anxiety, mood swings, loss of concentration – I thought I was going mad! And it made my stressful job almost impossible to cope with at times.

October 2012 I was diagnosed with breast cancer – invasive ductal carcinoma grade 3. In November I had a mastectomy on my right breast & no reconstruction. Also the removal of 7 lymph nodes. In December I was told it hadn’t spread to any of the nodes they had taken out. But the oncologist recommended chemo, which I started on New Year’s eve 2012. I was post chemo by May 2013. Although amongst other things it had intensified the menopause miseries along with a whole host of other problems.

I had lost all my hair. My self-confidence was gone and even the simple day to day things like driving somewhere had me terrified. Having to go to busy, crowded places left me shaking. My memory had deserted me and when I was back at work I realised just how much of what I did was accumulated “memory”, but not in my head anymore. Again at times it felt like I was going mad. Things improved very slowly and by the end of 2013 I still wasn’t firing on all cylinders.

January 2014 I was told I had another, even bigger lump on my right ovary and the endless tests began all over again. But the ultrasound also revealed an abnormal thickening of the endometrium. So now I was fearing both ovarian & endometrial cancer and the anxiety levels went through the roof & stayed there.

The pre-op last week was a total shambles! They didn’t have me down on the list, had to wait for hours (literally) and when I came to sign the consent form I had to point out that they would have trouble doing a bi-lateral salpingo oophorectomy as they had already taken the last one out in 2011. I had told them this at all the previous appointments, they had seen the tummy button to pubic bone scar – it was on my computer records!!! But the consultant wrote on my consent form “patient says left ovary has already been removed” – CHECK MY RECORDS!

Anxiety now in free fall, body tying itself in knots & sleep & appetite have deserted me. Really struggling to function now, and that is before a total abdominal hysterectomy and uni-lateral salpingo oophorectomy with biopsies on the lump (15cm) & endometrium the day after tomorrow.

I have to report to the DOSSA at 7.45am on Wednesday morning where my partner will have to drop me off & leave me. I am not allowed to take all the things I will need for my hospital stay. He will have to bring those when he comes back in the evening. I am allowed to take dressing gown, slippers, sanitary towels & a book! I will then have to change into a theatre gown and sit in this, my dressing gown & slippers for somewhere between 2-6 hours before I go to theatre, in a waiting room full of other people waiting for surgery.

This is just adding insult to injury. This is not about patient well-being, this is about NHS funding cuts, and I am disgusted and furious.

All in all none of this is conducive to a speedy recover. But as another kick in the teeth, because I had so much sick leave last year (and the year before and the year before that) my employers won’t be paying company sick pay this time, as I am not out of my rolling 12 months from the time I had off during chemo, and SSP will not pay the bills or put food on the table, so recovered or not I will have to go back to work a.s.a.p.

So sorry for the long ramble, but I really needed to get this off my chest instead of smiling sweetly at all the well meaning but infuriating people who are telling me to be positive, stay strong etc – I am too exhausted to think, let alone chose how I think!

Thanks again for the very helpful booklet & e-mail & kind regards,  Karen.

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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.

2 comments

  1. Oh my word – where to begin! Karen’s story just made me want to go to her, give her a big hug, and then calmly but firmly (ok maybe not that calmly,) insist that the hospital give her the care she needs and deserves.
    Each NHS visit is a lottery. The first time I was admitted for my op was disastrous and the care I received during my stay was awful. However, the 2nd attempt was much better and fortunately I could not fault the care I received.
    During the pre-admission check-up of the first attempt, I had warned the medical team during that I suffer from chronic migraines, triggered by stress & hormones. It was no surprise then, that on the day of the first attempt at the op, by the time I was checked in I was suffering from a migraine. I was nil by mouth, so the doctor told me I was not able to take meds to prevent the sickness. It took some time for the anaesthetist to decide that I was not fit for surgery, by which time cyclical sickness (unable to stop vomiting,) was well underway. The result was no op, 48 hours in hospital – vomiting for about 24 of those, and then on a drip for re-hydration. At one point I had no clean dressing gown or nightclothes as I had been sick on everything, but they left me like that for about an hour until I was given a surgical gown to put on. They tried 3 different injected drugs to try to stop the vomiting. The condition I had been admitted for was worsened by the stress caused by the marathon vomiting.
    When I was checked in for the 2nd attempt, I was told to arrive the evening before to be sedated to prevent migraine attack. The nurses had been warned NOT to allow the cyclical sickness to start, either before or after the surgery, so as soon as I said I felt queasy I was given an injection (of the 3rd drug, which worked,) to avert the symptoms. This meant that a nurse had to run to find a doctor during the night, whilst the fire alarm was ringing, and the remaining staff tried to find out if the ward needed to be evacuated.
    One of the nurses explained to me that after my first visit to the ward they had been de-briefed about migraines – most had NEVER seen anyone suffering from a migraine, and had no idea that they could be so debilitating.
    Health care staff need to be educated in helping their patients retain their dignity – I’m sure they used to do this.
    The loss of confidence I believe is the worst side effect of being ill. It took me quite a while to bounce back, and even now I occasionally have a “wobble” and allow myself a brief “pity party”. It’s like the illness has also damaged an invisible part of us, which hurts as much as the illness. Others only see the effects of the damage and feel impotent as nothing they say or do seems to help. I felt helpless and useless. At my worst I was seriously depressed. I didn’t know how to tell anyone – it seemed to me ungrateful after all they were doing to try to help.
    Karen, if you are reading this, you probably won’t believe it just now, but please be assured that one day you WILL start to feel better, and you WILL regain your confidence. Deep inside the hurt shrivelled old woman that I was when I was ill, waited my youthful bouncy self. Gradually, I was able to break free. After all that you have been through, I’m sure that you will too.
    I know that you are sick of people telling you what to think, so allow yourself to think your own thoughts, and at least once each day find something to be grateful for or something to make you smile – the sunshine, a flower, a smile, a good cuppa, etc. Gradually, over time you will start to see life more positively. Yes, you may still have the odd wobble, but you could well be a stronger version of the real you.
    Until you can believe in yourself again, allow those who care for you, to believe in you – eventually your confidence will return.

  2. Hi Natalie,

    It’s terrible what you’re going through. Just hand tight, breathe and know that you’re still alive and as long as your breathing your not doing anything wrong.

    I want to pass on a life changing find I discovered while I was going through similar health issues,
    http://www.soundstrue.com/shop/Mindfulness-Meditation-for-Pain-Relief/2112.pd. In this link there is a wealth of information that is life altering when dealing with issues involving pain regardless if it emotional or physical.

    Reading your blog has made me realize that the twitch in my eye and inability to cope with stress the way I used to is a sign that it is time for a Dr visit. Thank you for opening my eyes to what I thought was something that may pass, but now I know that my hormones are running wild and I need help.
    It has been a while since I practiced to John Kabat-Zinn and consulted my doctor.

    Thanks again, I wish you well.
    Sunny

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