Let’s make it right

I’ve had a post brewing for a while. You know how it is. You find your mind thinking about things, formulating ideas, analysing new data and information, having thoughts reinforced or challenged by new experiences. You wonder if the conclusions you are reaching are correct. You think about it when you are driving, when you’re in the shower, when you are sat in front of the telly not really watching it. You take long walks, you take long train journeys and you take your thoughts and ideas with you in your very well designed portable mind.

So here is a list of thoughts that need to be documented.

It is not right that only a fraction of cancer research uk funds are spent on actual research.

It is not right that the research  ideas are solely formulated by academics who are pursuing their own agendas.

It is not right that there are 3 or 4 national organisations (funded by the taxpayer) that duplicate the same work, yet don’t communicate effectively with each other.

It is not right that in a group of 20 people deciding the direction of gynae cancer research there is only one nurse and two patients.

It is not right that it takes a patient representative i.e me to suggest inviting the main gynae cancer charities along to the meeting.

It is not right, considering the money available, that no one has  a definitive contact list of say all the gynae clinical oncologists in the country. Or that there is a discussion about where a definitive list of all current gynae trials can be found (For both patients and clinicians)  This is with representatives from all the major National research organisations

It is not right that vast areas of the country do not have hospitals where patients can access clinical trials.

It is not right that clinical trials fail due to lack of recruitment etc. A very costly waste of funds.

It is not right that the VAST majority of research funds are spent on very costly treatment trials (which will ultimately benefit pharmaceutical companies) and not on prevention, early diagnosis, education or survivorship or palliative research. Areas which Pharmaceutical companies cannot benefit from so profitably.

It is not right that the big cancer charities tell you that your donation will beat cancer sooner. It should say a fraction will be spent on trials , the rest will be spent on advertising, hospitality and ‘infrastructure’.

It is not right that the cancer community, the front line doctors and nurses and MOST importantly the patients don’t identify what they want answers to then TELL the people with the money who then find scientists willing to run the trials. Instead we have scientists  chasing their own interests wasting time and money trying to find a trial that will get their position funded for another year.

It is not right that when I mention ‘value for money’ I get raised eyebrows from around the room from people who are on far more than my £80 a day for attending. (Yes I think I’m very good value for money)

It is not right that there are 5 main gynae cancers but 80% of the group are only interested in one.

It is not right that people walk away from an expensive meeting not really knowing what they have to DO.

There are so many other things that are wrong. So many. I think I’d better stop there before I get myself into trouble.












This. This. And more This.


Only 15% of cervical screening non attenders have made a conscious decision to not attend. Which is of course their personal choice. But that’s a LOT of women who would attend if they were invited in a different way, asked why they hadn’t accepted their invite and/or offered more convenient appointments.

In my talks I stress that I was NEVER asked face to face, or by telephone why I was not attending. Just easily ignored, costly, letters. This was over YEARS of non attendance.  I can’t say if it would of made a difference in my story but it certainly would of done no harm.





This month has seen friends die, friends wanting to die (and thankfully being stopped) friends nearly dying and being saved and friends undergoing more treatment to save them.  February 2018 has been a shitter in many ways.

I’ve been out and about doing my thing. The final Devon GP admin training workshops were run in Plymouth, I spoke at a woman’s health evening in Dorset, and have another couple of speaking appointments booked for March. These talks are making a difference. Women are booking smear tests. Women who have dodged for years are deciding that 20 minutes of their time and a small amount of embarrassment and/or discomfort are worth it to prevent going through what I have.

I was contacted this afternoon by Wiltshire Radio asking if I’d do a live piece later on. The rates of screening in Wiltshire have risen and are now in the the top 20% of the country. I do wonder if all my plugging away at a local level has played some part in that.

I have heard from the horses mouth that there is a flood of cervical smear samples landing at local labs. This years smear for smear campaign absolutely flew and I’m sure was very effective at getting women to make that call. Politicians are talking about smear tests in the House of Commons. Celebrities are talking about attending theirs.

In the book ‘Emperor of all Maladies’ it is recounted that in the 1950’s a woman rang the New York Times asking them to publish a advert for a support group for breast cancer survivors. She was told that words breast or cancer were not appropriate and it would have to be called a support group for ladies with disease of the chest wall. Today I’m on drive-time radio saying words like vagina, sex and smear test. We’ve come a long way.



(Starts at approx 1.09)










Cervical Cancer Prevention Week 2018

Hello Folks,

It’s that time of year again. The time when the everyone is encouraged to go for their smear test. As a long term non attender (look where that got me!) I am especially passionate about spreading the message in whatever small way I can.

I made contact with another local survivor late last week and had the pleasure of meeting her today at Musgrove Hospital, Taunton, where oncology staff  had taken the initiative and set up an information stall next to their onsite M&S store. The highlight of the day for me was the teaching manikin! I performed my first smear test! Didn’t think today when I woke up I would be asking strangers ‘Would you like to come and have a go at doing a smear test?’ Unfortunately technology malfunction means the video of my attempt is not available so you’ll have to have a picture of a bagel and a  washing up brush instead.



I’ve done these kinds of info stands before. You always meet at least one woman who is overdue. No one can force anyone to go of course, but explaining how not going got me in a whole heap of trouble, certainly makes them have a rethink. The reasons for non attendance are complex, varied and individual but reasons are heard over and over again. Sexual abuse, previous bad experience at a smear test, traumatic birth experiences, poor body image, difficulty in making appointments, not wanting it done by ‘their’ GP. I get the reasons. I get them all. Maybe that is what makes me good at talking to these ladies. At least 3 women today said they would go and book their smears. Not a bad lunchtimes work.

I spoke to a group of midwives. They do not receive any training about cervical cancer. The majority of them said they would not feel confident in identifying it. That’s bonkers. Midwives get up close and personal with cervixes more than most! Time for that to change surely.

So you know what to do. I ask you every year. Ask your loved ones ‘Are you up to date with your smear?’ It could just save their life.




Public Health England Press Release.

It’s January, this means that it’s Cervical cancer month with prevention week running from 22nd-28th January.

A few weeks ago I was asked to contribute my route to diagnosis story to Public Health England. The route in which someone is diagnosed with cancer can have a wide reaching impact on their long term survival prospects. Someone presenting at A and E with acute symptoms will have a far worse prognosis statistically than someone whose cancer has been picked up by screening.

The earlier a cancer is diagnosed the better the outcome but also the cheaper the treatment. It is imperative that more people are diagnosed earlier. One of the best ways to do this is to educate the general population on symptoms. The ‘Be clear on Cancer’ adverts are an example of this.

Some cancers however can be found by screening. Bowel, breast and cervical all have a screening programme to detect cancer or early abnormalities that may progress to cancer. You all know the drill by now. Just do it.

Below is the link to the Public Health England press release. I like the fact my name is in the same piece as Dr Jem Rashbass Cancer lead at PHE, Health Minister Steve Brine, and CRUK CEO Sir Harpal Kumar. Maybe I’ll write to all three and ask for funding to go and spread the word!





4th Cancerversary

Exactly what it says on the tin.

An update from my visit to Bath last week. The bottom line is that it’s not cancer that is causing me to bleed. They don’t know why I am, they say I shouldn’t be, but it’s not ‘sinister’ Didn’t leave with a spring in my step. In fact left with the feeling that if I ever bleed again I probably wouldn’t bother letting them know. I cried, I hate crying. It showed me there are plenty of tears still in me. I wonder when they will all come out.

There’s nothing like someone examining you to really drill home how much your body has changed.  I think it hit home quite hard. The advantage of not being faced every day in the mirror with what has been taken away has the disadvantage of generally being allowed to live in denial to a certain extent of exactly what has happened.

Certainly a ‘challenging’ appointment, mentally at least. I apologise to the ‘mothering’  nurse who tried to distract me with questions about the weather. I think my general demeanour  and monosyllabic replies communicated that I did not give a shit whether it had snowed at the weekend or not.

So yet again I’m supposed to be relieved, happy, overjoyed with the news. I’m not. I’m processing the physical and mental outcome of a hideous intimate examination with no clear answers.

Like I say, next time it happens, if indeed it does, I think I’ll keep it to myself.