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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