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  • Reflections on TCAT Conference

    Monday was a very busy day, and, for me anyway, one that was both fun and educational.

    The conference organisers had arranged for a professional cartoonist to be present and to capture some of the phrases/ideas expressed along the way.  Not caricatures of the speakers, just generic male/female characters with words from participants.  The one above was based on some of my opening remarks at the start of the conference.

    The conference was a clever blend of academic research presented by Professor Robert Fergusson from Pittsburgh, with inspiring patient stories and reports on the project itself.  The delegates included oncologists, psychologists, clinical nurse specialists, third sector representatives, patients and their families/friends, all of whom were equal participants.

    It was a great day, in which I gained a deeper understanding of the condition known as 'chemobrain' and was affirmed as being someone who, like most patients, is 'high functioning' so that other people are largely unaware of the issue.  I learned that, by default, I've done everything 'right' to mitigate and manage the condition - healthy diet, regular exercise, working at using my brain - and that whilst these are beneficial they are neither preventive or curative (Prof Fergusson mentioned having marathon runners among his patients). 

    The key messages that came across were that this is effect is widespread and even 'normal' among people treated for cancer.  Naming it for what it is demystifies it and takes away fear or embarassment.  Small group programmes which combine input on the condition, strategies for coping and peer support are hugely beneficial in promoting well-being.

    It was nice to have my experience officially validated, it was encouraging to hear about the research, and it was a privilege to listen to people's stories.  I'd never in a million years imagined that I'd be present at a medical conference, let alone chairing it - just another unexpected positive consequence of this whole journey.

    As part of the conference this video was shared, with stories from two amazing people:

  • Mellow Monster!

    (Image borrowed from the www)

    Back in February I shared something of my experience as a 'Menopausal Monster' and my decision to seek medical help, which in turn led to me being prescribed low dose antidepressants.  I thought maybe it was time for a bit of an update.

    Drug 'A' was not a good experience.  Once I'd got past the nausea of the first few days, it turned me into a bit of a twitchy, tooth-grinding zombie, devoid of emotion... life was mere existence, I reached the point where I would have preferred to be the angry monster (even if the drugged stupour was undoubtedly better for everyone else)

    Drug 'B' is going well, even though it means I am making a 'quality over quantity' choice as it is less 'safe' for me in terms of its effect on my anti-cancer drugs (it's not a dangerous drug, it's one that's in the fuzzy middle ground).  Although I continue to have some side effects, dry mouth, tooth grinding and (mostly nocturnal) muscle twitching (which evidently suggest I have a mild form of a condition that can be triggered by this class of drug.  Only me!)  this drug seems to suit me much better, even leaving in me feeling everso slightly 'high'.  I've now been on this one for a couple of months, and am continuing for a while at least.

    For all this, I am aware of underlying mood swings (almost certainly caused by cyclic hormonal changes) that, if unchecked, would make me back into a monster.  It's just that now I am a mellow monster, aware of an internal change but one that is so damped down it can never erupt. 

    I think being a mellow monster is OK, and most of the time life is good, if everso slightly 'technicolour'. When I was younger, I used to wonder how menopause might be - now I know that, for me at least, it's no fun whatsoever, but at least I am here to experience that!

  • TCAT Day Conference

    Today I am doing something I've never done before - I've been asked to act as 'MC' or 'chair' or somesuch (it's all a bit vague really!) for a day conference in a health care setting!  We have evidently 90 delegates registered - clinical nurse specialists, oncologists, professors, psychologists - and I, as one of the lay representatives on the steering group, have been asked to be the front person who keeps the show on the road!  Quite an honour and also quite a responsibility

    The conference is part of a project looking at providing appropriate support to people who experience cognitive changes following cancer treatment, what is often referred to as chemo-brain.  The project has run a pilot programme of small groups which have enabled people to normalise their experience, gain an understanding of the condition (and how it is/is not recognised in medical circles) to discover proven strategies and to share hints and tips for coping.

    I got involved with this project as a lay rep because of my own chemo-brain/tamoxi-brain experience (still ongoing into its sixth year) and a desire both to better understand the condition and to see what could be done to help other people.

    Today will be interesting and challenging, and will make use of many of my transferable skills as a person who spends a lot of time standing at the front of big groups of people.  Looking forward to it, even if it's not exactly a day "off"!