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RCOG Specialists of tomorrow Public Insight Group Workshop

24/6/2017

Yesterday. Fri 23rd June 2017, the Royal College of Obstetricians and Gynaecologists (RCOG) held a Specialists of Tomorrow Public Insight Group   workshop in London. Unfortunately I was unable to attend but one of our lovely Peach Sisters, Shona Beaver went on my behalf and she has written a short piece for the blog about the event.

"I attended this workshop on behalf of WCSUK at R.C.O.G
We were divided into very small groups In the morning we found out about the role of the RCOG in training doctors and a bit about how the curriculum is being developed.
Before attending the workshop I had been asked to bring along 3 key points that we thought are important
We then explored and discussed what we think specialist doctors should “do and be like”
At this session I fed in the following points
1) Doctors need to be active listeners and give time and also privacy when important.
2) We need   Drs who enable and inform women
3) Doctors need to treat women as iindividuals (used the example of 2 women with similar diagnoses one may choose a Mirena Coil and regular hysteroscopies where another like myself would survive better emotionally after hysterectomy}
4) Doctors need to be informed re signs and symptoms of womb and other cancers

Other qualities that came up were doctors need to be personable, have emotional intelligence ,empathy, and be skilled communicators both verbally and in writing

1) Doctors need to use clarity of language
Not use phrases like “womb cancer is an easy cancer” as this phrase can have a huge impact during emotional recovery from treatment
.2) Doctors need to recognize women are all individuals and recognize some women need a lot of information and others less. We talked about Drs having enough knowledge to signpost women to information

In the afternoon we explored what knowledge specialist doctors have.

This session was divided into 4 areas including

· Pregnancy and birth
Gynae and menopause
Fertility and womens health
Other areas of knowledge and Understanding

I managed to feed in that many women find hysteroscopy a painful experience. Doctors need to be aware and offer options for pain control and dignity needs to be maintained throughout .for example waiting till the women are dressed and sitting before breaking bad news .

At the end of the workshop there was a board put up to add anything else that was still burning so I put a WCSUK card on it with the signs and symptoms.

I also managed to feed in that doctors do need to recognize cancer can affect women though the age ranges and put a few stats re youngest people you have had and stat re amount of women in group diagnosed young .

Very positive workshop, met some interesting people with a wide range of special interests in womens health.
Thanks to Kaz for the opportunity to go yesterday" .

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Why I do what I do.

14/6/2017

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.I have been feeling a little disillusioned lately, both in my personal life and in the work I do with WCSUK. The depression has come back and I’ve been struggling to keep on top of it over recent months. Plus the menopause issues seem to have reared their ugly head again and that's not helping either. Let’s just say that 2017 hasn’t been a good year so far, but then again neither was 2016, 2015…. You get my drift?

In April this year, WCSUK marked its 6th Birthday. That’s 6 years since we began and it’s been a long 6 years. I never envisaged, when I began the FB page on the afternoon of 11th April 2011 that I would still be doing what I do. In the beginning it was about being a source of support for women who had been diagnosed with womb cancer. I remember how I had felt just over 12 months previously when I was told I had it. Scared, alone and worried what the future might hold.

Within weeks of the FB page going live it soon became apparent that there were many other women who felt the same way. There was a lack of womb cancer specific support out there, both online and in the “real” world and WCSUK was filling a vital gap.
It also became apparent that there was lack of awareness about womb cancer. Many of the women who came to us had, like me, never heard of this cancer before they were diagnosed. This came as shocking news because as I was now aware, womb cancer is the most common gynaecological cancer. Why did it not have an awareness month like other cancers? Why did women not know about it? Why was there never anything about it in the papers?

So, WCSUK became not just a support organisation but also an awareness one. In September of 2011, we held the first womb cancer awareness month, following on from our Peach Sisters in the US who use September for their awareness month. Ever since then we have worked hard to raise as much awareness as we can, not only in September but through-out the year.

WCSUK has never been about me. I do what I do because I know what it felt like to feel scared, alone and unsupported and I didn’t want other women to feel the same way. The ladies who have come to WCSUK, especially the ones in the private chat group we have on FB have formed friendships and support each other through the tough times, and the good times. As some of them move on and feel they no longer need the close support offered in the group, other newly diagnosed ladies take their place so that the group is always buzzing and the ladies are supporting each other with advice, friendship and lots of hugs, even if they are only virtual ones!!

There have been times when I have wanted to move on and leave cancer behind me just like many of our ladies who get the all clear and push their cancer diagnosis to the back to their mind and take back some control of their lives. I am over 7 years post-diagnosis now but feel unable to move on; I’ve never been told I am in remission so I don’t feel that I have had a cut-off date from cancer if that makes any sense.

It somehow feels selfish to want to put myself first for a change but it’s getting to the point where I am going to have to – but for now there is September’s womb cancer awareness campaign to plan for.

Kaz xx

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My story of a womb cancer diagnosis by C.M

4/6/2017

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Another Peach Sister shares her story to help raise awareness

"The before.
Every woman I know complains about her periods – they are painful, heavy, go on for ages etc. Having periods suck – it’s the worst thing about being a woman. BUT pretty much every woman has them. So when you have a period – you don’t know what is right and what you should be concerned about. The internet and doctors tell you that “about an eggcup” is normal – but how do you measure that? Is that an eggcup a day? A whole period? A lifetime?
Anyway, I’ve always had difficult periods. Incredibly painful up until I was 20. Then they vanished and then they came back non-stop. My “floods” began back in 2012 – I was on a canal boat with the husband and two friends and it was horrific. I was using numerous pads and still having to change every 20 minutes or so. I bled through all the bedding and all of my clothes. Plus the pain! I bled so badly that I stood up and it gushed out and ran down my legs and onto my shoes. I thought I was dying!
I went to a GP and he was concerned I’d had a miscarriage and once I’d assured him I definitely wasn’t pregnant he gave me some progesterone tablets and told me that would stop it. Which it did – for the week I was taking them for and then it all started up again so I went to see my normal GP (she’s wonderful!) and I was prescribed some clotting medicine – this did the trick . So this is how I survived – whenever I started to bleed heavily, I would take tranexamic acid for four days and my periods would stop. For the first two days it was like carnage but then slowly became manageable.

Never-ending.
After my second big flood – I arranged to see a gynaecologist. I had been seeing one due to PCOS but we’d fallen out after she’d fat shamed me so I needed to find a new one. My GP had heard of one lady in particular so I used my BUPA cover and went to see her privately. By this time I was bleeding continuously – not heavily but enough I needed to wear a pad every day and change it a couple of times.
I got my appointment with the consultant gynaecologist and we discussed my PCOS and my bleeding. She wasn’t overly concerned about the PCOS – but she was concerned about the fact I was bleeding – she sent me off for blood tests and a scan. The consultant thought I might have a polyp or a fibroid but she wanted to wait for the blood & scan results. Neither of these showed up anything to be concerned about and by the time I went back to see her, the bleeding had stopped. She thought it was likely I’d had a polyp and that had passed – which would have caused the heavy bleeding. She told me to come back if anything started up again and she would arrange for me to have a hysteroscopy .
So this is how I managed for the next 18 months – taking the tranexamic acid when things got too much and wearing pads when the bleeding didn’t stop.

The summer of blood
I didn’t have any more major bleeds and in fact between March and June 2014, I had pretty normal periods. So in July when I began to bleed, I didn’t worry. I didn’t even have any tranexamic acid in the house. The flood began at work – I was in a meeting and I stood up and I felt the gush. This was how my summer of blood began.
I took tranexamic acid – it didn’t work. I took progesterone – this slowed it down but didn’t stop it or stop the pain and also drove me insane! I would cry without reason, I hurt everywhere, I felt sick all of time. I couldn’t sleep. Horrible. My GP signed me off for two weeks. At the end of the two weeks I went back to my gynaecologist – she ordered a scan and bloods. This time, the scan showed something – the radiologist couldn’t say it was a polyp but she suggested a look was required.

Hello hospital my old friend
On 20 August 2014 – I went and had a hysteroscopy. My second ever general anesthetic and it went fine – was a great experience in fact. My gynea couldn’t find a polyp – she said the lining was thick and “fleshy” but she cleared it all away and sent it off to tested. I was in and out of hospital (private) within an evening. The next day, I felt wonderful! The best I’d felt in ages. No bleeding, no pain. Amazing!
By the Saturday (I had the op in the evening of the Wednesday), I felt awful – really bad cramps, bleeding, feverish. I just put the cramps down to the womb going back to its normal size and the bleeding being because I’d been scraped out. And the fever I didn’t really recognise as such. The husband was away for the night and I spent it feverishly dreaming slugs were climbing all over the cats’ bowls. I was also freezing. I remember putting loads of layers on and using the hairdryer to warm my socks and my feet. Yet still I didn’t recognise I was sick. Not until 7am on the Sunday morning when I stood sobbing in the bathroom feeling so terrible and a memory flashed into my head – I hadn’t felt this bad since I’d gotten my post op infection after I’d had my tonsils out. THEN I knew . An early morning phone call to NHS direct, a trip to A&E with my wonderful friend I’d dragged out of bed and two lots of antibiotics later, I was back home – feeling worse. The doctor I’d seen in A&E had said if I felt worse or felt sick to come back in.
To cut a long story short – I did have an infection. I was treated ridiculously poorly by every department I encountered on my return visit to A&E and I was hospitalised for three days due to the infection. But this was it yes? I had been unwell enough? Ha! No quite.
The worst is yet to come
Two weeks after I’d had my infection, I was due to go back to work. But finally – the results of my biopsy were back. I walked into my gynea’s office thinking I was going to be told it was nothing that losing some weight wouldn’t solve (answer to EVERYTHING when you’re a fat girl) and walked out with a potential cancer diagnosis. Basically my results had been reviewed by two pathologists and both were unsure – including one who is one of the leading pathologists in the UK. It was likely the fact I’d been taking huge amounts of progesterone had skewed my results but to be better safe than sorry, I was going back to have another biopsy but under urgent care at my local NHS hospital.

The unknown journey
The biggest difference I noticed between NHS and private care is not the level or standard of care you get but how much you are told what’s happening. With private – I guess because you are a paying customer – you are told “you are going to have a scan for x reason.” “These blood tests are to tell us y”. That doesn’t happen with the NHS. I got back from holiday with my next operation already booked in – with lots of demands about how to ensure I have it. My first appointment with the gynaecologist consultant involved me having to have an internal scan without warning (and it being discussed in the middle of the waiting room with me!). I wasn’t told much else. I read the results of the scan because I was given the paperwork and had to walk back to where my consultant was. It read “womb lining <5mm thick (measuring 25mm) looks hyperplasia in appearance.” whatever that meant. I should have known then that I was going to spend a lot of time asking “why?” and being on the defensive. It’s probably easier if I bullet point what happened next:
* I was booked in for my operation – and told I would need to stay the night as they would put me on IV antibiotics to prevent me getting another infection. But only my consultant and I appeared to know this! I spent my whole time in recovery explaining “I get post op infections; I need to stay in for antibiotics”.
* I was asked by the ward sister if I’d had an operation in last six months, three hours after coming out of surgery!
* I kept receiving phone calls about scans and MRIs but had no idea what these were for and why. In fact my MRI and CT scan were booked for the same time and if I hadn’t enquired about why I wouldn’t have had one of them.
* I wasn’t told I would need to have a cannula in for both scans – until the day. I then had to endure someone trying to get them in!
* I was fat shamed 10 minutes before my operation by the anaesthetist – who asked me what I was doing about my weight! She then got shirty that I was abrupt with her “you took offence when none was intended” “no, you assumed I would just take it when you questioned me about my weight when it has nothing to do with why I am here”.
* I was told I needed to have my results discussed at St Thomas’ and was given an appointment time. Two hours before that appointment it was cancelled because “as you don’t have cancer, then you don’t need to see us.”!!!
And I’m sure there was more that I’ve blanked.

Tough decision
I was ready for my results. I was confident that it was nothing to be worried about. After all, I’d been told it wasn’t cancer. WRONG (kinda)! I had pre-cancer – I had something called complex atypical hyperplasia and I had two choices:
1 – take 16 times the amount of progesterone I was on in the summer (you know when I felt like I was going insane) for three months. Be bioposied again. If the hyperplasia was under control, loose eight stone, try and have IVF. If the hyperplasia wasn’t controlled – have a hysterectomy.
2 – have a hysterectomy.
The consultant wanted me to decide there and then – he also assumed that I would go for option 1 . I didn’t – I needed to talk to my husband. I needed a second opinion. I needed to research it further.
Here’s what my research found:
1. Hyperplasia means you are infertile. My womb was not a healthy or hospitable environment for egg implantation. Getting pregnant naturally was impossible. Getting pregnant and staying pregnant through IVF for someone with hyperplasia? – 1%.
2. A third of all women with complex hyperplasia were found to have cancer once they’d had their hysterectomy.
3. Taking the progesterone was basically a way of clearing out my womb – I would have more horrendous periods over the three months of taking the progesterone.
4. The hormone therapy only works in around 18% of cases. The rest end up having three months of hell and then having a hysterectomy.
5. I would be given around a year to loose eight stone and try and get pregnant – throughout that year I would have a biopsy every three-four months to ensure the hyperplasia was still under control.
None of the above sounded positive. I decided to be logical – even if they didn’t find cancer, I had to think about my periods. Did I really want to spend potentially the next 20 years with periods like I had been suffering? The chances of me getting pregnant seemed slim to none. We had already discussed other ways to be a parent.
So after a second opinion – where my original consultant was as logical as I was - I decided to have a hysterectomy. At 35 years old and without yet having children. To me it seemed like a non-brainer. As it did to pretty much everyone else we discussed it with. Everyone fully supported my decision – this made it easier.

Time to cut
Thanks to my wonderful consultant, I managed to get on the books of one of the top five laparoscopic gynaecological surgeons in the country. My consultant’s thoughts were if I was going to have to endure this operation let’s make it as easy as possible. The surgeon was a softly spoken giant of a man. He immediately made me feel at ease when I met him. He examined me and said that he would be able to the operation on me no problem (basically as long as the surgeon can find and feel your hip bones then you’re ok). My weight was not mentioned once.
I was booked in for 11 December 2014. I went privately.
I went into surgery at around 7pm – I was back up in my room by midnight. I don’t remember much about this at all – morphine is wonderful. My husband had been told all had gone to plan.

The insider knowledge
Hand on heart – although scary and not at all pleasant – having a LAVH (laparosopic assisted vaginal hysterectomy) wasn’t all that bad. I’ll break it down by the lead up, the first 24 hours, the first week, the first month and we’ll take it from there.
The lead up – before the operation you will be told not to eat or drink for a certain period of time. You will also be given a laxative to take. The laxative for me just made me feel like I was having one of my dodgy tummies. I have a sensitive stomach and sometimes its violently upset. This wasn’t so traumatic for me. However, if you are someone you doesn’t have an issue normally, it basically feels like you’ve got food poisoning without the fever or the pain. Just be close to a loo and have moist toilet tissues to hand!
The first 24 hours – the first six hours I don’t really remember post op. I remember being given morphine. I remember thinking the leg pressure thingys were someone touching me on the leg, I remember it feeling like I really needed a wee but being unable to go. You have a catheter in – for me this was the worst thing. It wasn’t painful, just really uncomfortable. You will have packing – basically a whole box of tissues will be shoved inside of you and I think this more than the catheter was making me feel like I needed a wee. You may have a drain in if you have bleed a lot during the surgery. I did – this only hurts when you try and bend. You have a big tube into your pelvis. You will be on a drip – and you will be having saline and antibiotics put through it.
I had 4 tiny incision wounds - one in my belly button, two both sides and one below my belly button. They were about a centimeter across and I had 1 stitch in each one on my belly and two in my belly button. They’re pretty much healed now and not very noticeable.
About 9am I was helped out of bed and allowed to wash my face and body if I wanted to. I washed my face – I thought I was using my face wipes, turns out I was using my moist toilet paper!!
By 12pm my catheter and packing was out and my leg compressors were off – BLISS!! I was then able to get up and go to the loo by myself and move around. My drain was still in but as long as I was careful it didn’t bother me.
Every hour I felt better. I was being regularly topped up with pain relief but the strength of it was slowly being wound down. I was able to eat a little and my stomach was making lots of noise (you fart a fair bit!) and was a little uncomfortable as your intestines begin to work again.
My drain came out around 8pm – it wasn’t very pleasant but I was given morphine to cope with the pain and it was over and done with quickly. Once that was out, I had next to no pain moving around.
The first week – I left hospital at lunchtime on the Saturday – just a day and a half after my operation. I was sent home with more dressings, injections of blood thinner and painkillers. I walked out of the hospital without any help. It felt odd – like my legs and head didn’t really belong to me. I also couldn’t believe it was all over!
The first week had its ups and downs and actually the worst was the fact I had done something to my leg and that was causing me agony (I think due to the position I was in during surgery it pulled a nerve or a tendon in my thigh and its taking its sweet time in recovering!). You feel stiff and a bit battered – it’s uncomfortable to bend and to sit in certain positions but overall I was up and moving around. I was walking for five or so minutes every day and I was able to use the shower and the toilet without help. The husband did have to help me dress for the first week – but that was due to feeling a bit tired and weak and not being able to bend. But I dressed myself one week after the operation no problem (the husband had to return to work).
I was able to eat what I liked, but didn’t feel like huge meals so just had small ones. I was pretty teary – but I think now that was more due to the shock than the kick started menopause. In fact I would burst into tears every time I brushed my teeth for some reason. My pet theory on that is trauma from them trying to knock me out. It took them a while and then had to sedate me to get a line in. I must remember it on some level. But that’s just me – it won’t necessarily be everyone’s case.

The big C
Cancer – a word that strikes fear into nearly everyone. At the time I was adamant that my results would come back negative. There was over a 60% chance I wouldn’t have cancer – that I would be without a reproductive system for no real reason. The husband and I concentrated on being prepared for that. I reasoned that my periods had been so bad that that in itself was reason enough. So when I got the results that cancer had been found I was pretty shocked. But what worried me the most was that I would have to endure more tests or possibly have more treatment. Luckily, I don’t. Cancer was found in a small part of my womb but nowhere else. It had spread to the muscle of the womb but not to my cervix or my ovaries. My perseverance and the fact I have good medical support paid off. My GP and my first consultant didn’t just brush off the fact I had prolonged bleeding being down to PCOS and my weight. They listened when I said “something isn’t right here”. I was lucky.

And finally. . .
What happened to me at my age was really rare. I have a few of the factors that lead to womb cancer – I started my periods before I was 10, I’m white with fair freckly skin, I have a family history of heavy periods, I have a family history of female cancer. I also had PCOS. All these are factors which might lead you to have womb cancer. But equally they might not. However, I would urge you to talk about your periods with your friends and push your GP if you feel something isn’t right. My cancer was put at stage 1a – having the hysterectomy cured me of cancer 100%. I dread to think what would have happened if I’d carried on ignoring what was happening."

If you would be willing to share your story then please get in touch using the contact form.

Kaz xx

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RCOG Specialists of tomorrow Public Insight Group Workshop

Why I do what I do.

My story of a womb cancer diagnosis by C.M

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