Morph

I’m aware this blog has morphed, expanded and developed into far more than my experiences of cancer. I don’t think its a bad thing. But here is still where I come back to record my news.

Anyway, while at conference I received, somewhat ironically, a phone call from the hospital to book me in for my EUA (examination under anaesthetic) I was beginning to wonder when I would be offered a date. Its been a very long time coming, and even though I attended a pre op at least a month ago I’ve not heard anything.

They have offered me 7th December. I’ve told them that I don’t want that. I can’t face another Christmas being overshadowed by hospitals and waiting for results. I think that’s fair enough. I will remain on the waiting list and they will offer me an appointment in the new year. ‘My’ GP (I’ve never met them before) wants to see me for a med review in a couple of weeks and I think I’ll have a good chat with him (or possibly her I have no idea) about it then.

There is an increased risk that I will develop anal cancer. Equally there is more chance statistically that I won’t. It’s hard to spot and both precancerous and cancerous conditions are hard to treat. The side effects of treatment are pretty grim. I think I’ll just bumble along with the rest of the general population who don’t get their arse checked and lumps bitten out of it on a regular basis. Especially not weeks before Christmas.

 

 

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Liverpool Illustrated.

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I’m sat here on the sofa, with a million thoughts buzzing round my head, emails to answer and to write, calls to make, washing to do! Its the first time I’ve had the space, after a tedious journey from Liverpool, a day’s work followed by a mercy dash last night to Surrey and back. Dog needs a walk, I need a bath, but I need to empty my head a bit.

The last day of conference was a little frustrating. The morning session was jam packed with things I would of liked to have gone to, it was a tricky choice to make. But I went to a session on PROMs that all important measure of the outcomes of cancer treatment on patients. Cancer treatment for anyone is rarely a walk in the park. Physically or mentally.

We need to get the focus put firmly on research into how we can make the PROMs more positive. Before that, we need for patients to have access to accurate, relevant and accesible outcomes for the treatment they are about to receive. I’m not keen on the word consumer but I’ll use it to say that this is all about consumer choice. If you are 80 do you want to go through gruelling treatment which will possibly render your last days a misery or do you want to know what palliative care is available to you. I’ve seen 3 close people die of cancer. There comes a time when ‘the drugs don’t work’ and there should be more information available to make that choice.

Lots of contacts made around this issue and lots of things to follow up on.

The  NCRI consumer forum made it into the Daily Mail. Look I know, not my first choice of rag but you take publicity where you can.

http://www.dailymail.co.uk/news/article-5064405/Pot-luck-sees-patients-miss-cancer-trials.html

Cervical cancer and HPV vaccination made Radio 2 headline news today…

http://www.bbc.co.uk/news/health-41929267

The best bits of conference for me were the intangible meetings and conversations from the bloke manning the escalators, the cab drivers, to the shared umbrella 3 minute conversation with an expert in cancer metabolism. Or the conversation with the devastatingly handsome bowel surgeon from Greece on a walk back from ‘town’.

What a highly skilled, intelligent, passionate group of people posses between them is phenomenal. The question for me lies in where do we focus our energy and most importantly our funds. It’s our money after all.

Watch this space.

 

 

 

 

 

 

 

 

NCRI2017 Liverpool 7.11.17

Here are today’s key points.

Proton beam therapy is AMAZING. Here’s a quick layman’s guide. 50% of all cancers, are treated by surgery 40% by radio therapy, and 20 % by chemo. That adds up to more than 100% because some are used in combination. This means that radiotherapy is a real work horse in cancer treatment. The trouble with radiotherapy is that it is rather like a cannon ball. It, hopefully, obliterates the tumour but damages healthy tissue on the way in, on the way out, and around the tumour. This is why so many cervical cancer patients who have received RT have ongoing bowel and bladder problems, and sexual functioning problems due to scar tissue in their vaginas. When brain tumours are blasted it doesn’t take a huge amount of imagination to realise that serious damage can be done along with potential curative benefit.

Proton beam therapy isn’t thought to be any more effective at blasted the tumour, but it is FAR more accurate. The beam can go in causing minimum damage, blasts when it hits the tumour, then leave the body again with minimal damage. More like a bullet that only explodes when it hits it target; the tumour.

One massive problem. The machines are hugely expensive. Similar in price to a fighter jet. Choices, choices!

The next session was about lifestyle. Smoking and being fat are bad for you apparently. I smoke and I’m fat. That session made me want to have a cigarette and eat cake. I don’t think that would of been her desired intention.

Last session of the day was about Patient reported outcomes. What patients report as symptoms and outcomes of their treatment. However the clinicians decide what subjects the patients should report on! I was on top form, said some slightly contentious things, which led to a few rounds of applause, and an invite from the Professor to join him for some upcoming work in the West country. Bingo!

The evening found us at the Maritime Museum for a drinks reception (my idea of hell) and then a FANTASTIC and I mean FANTASTIC production by teenage and young adults about their experiences of cancer. One of the experiences recounted was of a cervical cancer patient. Nearly lost it. Didn’t.

‘There is a light: BRIGHTLIGHT theatre performance during the evening. An original performance inspired by the findings of BRIGHTLIGHT, the first major study of its kind, There is a Light presents young patients’ perspectives on specialist cancer care in England. Directed by award-winning artist Adura Onashile the show is developed in collaboration with Brian Lobel, BRIGHTLIGHT’s researchers, youth board and young people with personal experience of cancer.’

So many conversations with so many interesting people, so much information, so many ideas and plans to formulate!

 

 

 

NCRI2017 Liverpool 6.11.17

You can’t help how you feel and I’m feeling frustrated. I was frustrated before I came here about numerous things. I feel this post may turn into bit of a rant so if you only want hearts and flowers don’t read on.

A few months ago I was asked, on the back of the training I delivered, to speak to school nurses about HPV at one of their training events. I was very up for doing this. It would of involved a 150 mile round trip, a missed day of paid work, plus extra time to plan and prepare what I would deliver. I didn’t want paying, I didn’t want reimbursement for lost pay, I just wanted travel expenses so I wasn’t further out of pocket. I contacted two very relevant charities, both of whom I had done work for before, and neither could pay me the, top estimate, £50 mileage allowance. So keen was I to deliver the training I agreed to go for free, out of my own pocket. Unfortunately I didn’t go in the end as it clashed with a job interview.

Also a few months ago I was interviewed by another charity, in depth, over the phone. I told my story, which as you know is fairly intimate, with the intention of it being used to raise awareness during Gynae cancer awareness month. I was told that I would be contacted with a copy of the story and that it would be used for awareness purposes. I did not hear from that charity again except for a general mass email a couple of days ago about a fundraising event. I’ve put them straight.

More recently it was announced that a charity had asked another charity to produce lesson plans for secondary age pupils around HPV. I spoke to the head of education at the charity that had produced the lesson plans offering my services, for free, to go into schools and deliver them. Apparently they aren’t going to be delivered, they are going to be available to schools in a pack. Any teacher knows that 99.9% of lesson plans produced by organisations and never delivered and sit in dusty files on a shelf in the staff room.

Today I’ve heard of yet more clever stuff being researched, by experts flown in from all over the world. I’ve sat with people who like myself have had their accommodation, travel and conference attendance paid for by cancer charities and research institutes. I hope we are all offering value for money. I reckon my £50 petrol money to talk to the school nurses would have yielded a better return pound for pound.

I spoke to the Director of the CRUK Institute in Manchester. I really will talk to anyone! I told him that vast sums of money being spent on research I’d heard about earlier that adds a month to someones life might not be the best use of funds, maybe more funds should be spent on mental health services for survivors, support for primary care to deal with post treatment side effects, for more patient involvement. Real patient involvement not ‘tick box’ tokenism. I do say it how I see it.

Should cancer research funds be all about finding a cure, or with more and more people surviving cancer should there be more money spent on how to support people living beyond cancer and into education into how to prevent it. Should the site specific cancer charities be asking patients what WE want their funds to be spent on? Or should they make the decisions for us?

 

 

 

 

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.