Report by Jo’s Trust.
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.
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.
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.
On Tuesday I saw Alistair Campbell at Waterloo station. Today I was on the same site as Jeremy Hunt.
I’ve always quite fancied Alastair Campbell. He writes a cracking novel. I admire his honesty around his alcoholism and battles with mental health. I’m ashamed to say I stared, walked away, turned back and stared again. If he hadn’t been on the phone I’d probably have gone up and said hello.
I know there is something I could say about Jeremy HUNT that fits with the topic of vaginas but I just can’t find the right word……..
Anyhow. I usually spend my time in my rural bubble of bliss and venturing out into the big city is always good. This week I was at the Angel Building, Cancer Research HQ.
A few weeks ago Jane my Macmillan nurse had emailed me the details of a position within the NCRI National Cancer Research Institute. Saying no pressure but I think you’d be good at this. The role was for a consumer member of a clinical studies group for gynaecological cancers. Long story short, I was interviewed, I babbled a lot, told the interviewers my two best attributes were being gobby and feisty and got the role!! More details of this will no doubt follow.
Today I was at Dorchester hospital. I was speaking to a group of 17 year olds who wanted to become doctors. I was a little jealous! They had a 3 day programme of fascinating talks and visits to different specialities in primary and secondary care. My job was to tell them about my patient journey. They were a great group but it saddened me to hear how they were put off following their dream due to cost of tuition fees and tales of workloads from junior doctors.
Just metres away from me Jeremy was having a private visit to the hospital. No general public nor press were allowed. I can’t imagine he ever waits for a train at Waterloo station.
The date’s been looming for a while. Even if I had hid the letter under a big pile. Today was finger up the arse day! The joys. I went in January to see him the first time. I don’t think I wrote about it. I was absolutely full of flu then and just 3 weeks post EUA. At the time I couldn’t understand why he didn’t examine the skin around my anus (this is where the issue is) with ‘magic glasses’ but stuck his finger up my arse. I’m not 100% convinced he knows what he is supposed to be looking for. I told him today that what I really need is an anoscope. But hey what do I know?
Arse man, who is probably a lovely guy, but isn’t yet tuned into me, proceeded to stick various things up my arse. I think he may of thought I was serious when I proclaimed I’d been looking forward to this for weeks. When he told me was just wiping me clean from the lube, I replied with ‘Such service!’ There is no dignity left. None.
He believes I should be ‘extra safe’ and have another examination under anaesthetic and biopsies. Here’s the thing. I don’t want to be extra safe. I want to get on with my bloody life.
I asked him what he would be looking for and what he would do if he found it (Just to make sure he knew really) He said if cancer or pre-cancer was found I’d be referred elsewhere as they don’t have the speciality there to deal with it. What is the point of going there then???
Was rather surprised by the fact that I wasn’t all over him like a rash to get EUA booked in. Said I’d go away and think about it.
Royally pissed off.