NCRI 2017 Liverpool 5.11.17

What an absolutely fabulous city this is! I arrived yesterday after a long haul journey of 8 and a half hours. Had a mooch about last night and this morning. So many things to see. Today was The Tate and The Slavery Museum. Both very thought provoking, both left their mark.

Before that a discussion over breakfast with the head of the NCRI consumer members covered; a collaboration across site specific cancers with a link to HPV, the frustration at the lack of true patient involvement with cancer charities, a collaboration between Teenage and Young Adults group and Screening and prevention re HPV education. This was before I had even finished my coffee. More of this at a later date.

The start of conference ‘Proper’ was at 3pm. Welcome speech then followed by a talk on…well…I couldn’t tell you….lots of detailed knowledge about teeeny tiny little bits of stuff which may or may not respond correspond to big number of other things. It made me sit there and think, I’m being touted as a patient expert and I do not have a single clue what this guy is on about. Another guy talking about similar small things was easier on the ear, but still way over my head.

When it was time to leave I was thinking ‘What have I done?’

Then this happened. A really good talk from a guy at Oxford, who basically gave a talk for ‘beginners’ about cancer treatments. Very good stuff indeed. Learnt loads about radiotherapy and what proton beam therapy is in more detail. A member of the audience asked the question…Many of my patients report fatigue when going through radiotherapy, is there a specific reason for this? Guy didn’t know why radiotherapy would cause fatigue.Why would he? He didn’t deal with patients, he was a physicist playing with his beams.

I later went up to the guy who had asked the question and gave him some possible answers. Having had a recent cancer diagnosis and dealing with the fall out from that, having to organise life, and lifts, and others grief, and researching your cancer,  analyse your emotions, pondering your mortality and the meaning of life and being at hospital every day IS KNACKERING. Simple.

The guy also went on to talk about targeted therapies, and which part of the cell sequence is affected. They can now pinpoint what part of a cells DNA is responsible for causing the cancer. Amazing stuff. I asked how, from a biopsy, you can tell this. How in a real life scenario does one find out what type of camp their cancer falls into. They can’t tell from a biopsy was the answer. They may be learning how to fix problems,  but its not easy to find out if it’s that problem that needs fixing. Is any research valid if its not directly transferable to the patients? Hmmm. So much to think about.

 

 

 

 

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Experts by experience

I’ve just spent two days in London attending induction training for my role with the NCRI. My brain has that pleasant ache one has after a good work out.

There were 8 of us all affected by cancer in some way, some were cancer patients, others had lost husbands or children to the disease. We’d travelled from all over the UK including Wales and Scotland. We will be the patients voice on matters relating to clinical trials for our specific area of interest. I met such incredible people all truly passionate about research and finding ways to improve outcomes for cancer patients either through their treatment pathway or in areas of prevention or life beyond cancer. Considering the rather serious topic we all had a great time.

We learnt how we will fit in to the research process, how research is funded, carried out and what is done with the results once they have been collected. We will help to identify gaps in current research and be ‘experts by experience’

Research is funded by you and me. That is either through donations to cancer charities or by paying your taxes to fund NHS trials. Even pharma’s funds come from us indirectly so it is imperative that we have a say in what we want found out, how we want the results to be found and how we implement the results. We are all the consumers of research.

One of the people there was a professor. A highly educated and intelligent guy who works in cancer research in one of our top universities.  His area of specialism was something very complicated to do with DNA repair, genomes and proton beam therapy (I think….well over my head) He often wondered what these theoretical cancer patients he was potentially helping were like. Then he became one. All the research, all the academia, all the data and results and tests became, suddenly very personal to him. He realised that all this work he was doing had a real life person at the end of it….just like him.  He suddenly became a consumer as well as a producer of research.

We will be there to remind the the research scientists, the professors, the academics that the fantastic work they are doing directly affects us. We are experts of our cancer too.

 

 

 

 

 

 

September

The end of summer, the beginning of autumn, for anyone who has ever worked in Education the beginning of a New Year. A time for change.

It’s been a bit of a manic week. Job application and interview. Son starting college. Mum had a fall. Dealing with government agencies who are incapable of talking to each other and sharing information. Stressful for sure but I’ve got through it. Huge thank you’s to everyone I spoke to and asked questions of in the run up. Learnt a lot.

I didn’t get the job.  That’s ok. I was me, I told them what I’ve done and what I want to do. I told them what I thought some of the issues were in the NHS. (too many people talking and not enough people doing)  I didn’t swear! I wasn’t a fit. That’s a shame of course, but I know I’m making a difference and will continue to. The feedback was useful and my application was good enough to get me an interview, so all is not lost. It would just be really nice to get paid for what I’m doing!

Unfortunately I had to blow out an invitation I had to speak at a school nurses training event on the same day as the interview. They wanted me to speak about my experience and HPV and cervical cancer in general. School nurses, of course, being the one’s who will be administering the HPV vaccine. Another contact made though, and hopefully more will come of that. Interestingly a conversation with the most intelligent 18 year old I know revealed she knew nothing about HPV and thought ‘the jab’ was to prevent breast cancer. Education needed for sure.

I’ve been invited back to another GP admin staff training event in Devon in November. I must be doing something right.

Next week I’m in London for a couple of days with the NCRI for training. I’m really looking forward to this. Lots of other NCRI events coming up too.

Enjoy your mellow Autumn days. I know I will.

 

 

 

 

 

 

£50k

 

Last weekend was Relay for Life weekend. I was involved as a survivor, team captain and as a member of the committee. The fundraising before the event and on the day has raised £50k for Cancer Research UK with more still coming in. It was a knackering, wet, weekend but was amazing to see so many people getting behind the cause and the event. A huge well done to Lou who was brave enough to take on the huge challenge of bringing the event from an idea to fruition. It’s a privilege to be able to see where this money will get spent as I get more involved in the consumer forum with NCRI.

 

 

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