I promised to bring this to attention

While at a conference last week I found out about some research that might be invaluable for future carers of Cancer Patients.

Have a look at this URL http://www.actcancer.org/carers%20survey.htm

Saturday 24th March 2007

A few of the Cancer Voices ACT faces were at the Forum organised by the Cancer Council ACT today.

Attached is a photo. From left to right:
Val L, Russell McG, Denis S, Peter G

Autumn Cancer Forum - Saturday 24 March 2007
A free information day for people of all ages with any kind of cancer diagnosis, their partners, families and carers, health professionals and other interested people.

Time:	9:00am to 3:00pm
Venue:	National Library of Australia, Parkes

I was really looking forward to this forum, and I was really excited by the subjects to be presented and especially some of the speakers who were featured on my copy of the program.

When I got there I experienced disappointment as I realised that some of the people I was looking forward to hearing were no longer available and had been replaced by the time that the great day rolled around.

Still, "that's life," I thought, "drop the attitude and listen!"

The introduction went off well enough, even though the air conditioning in the room was off line and so the combined body heat of the attendees started to make life uncomfortable, as the heat rose and the prospects of dehydration loomed.

The first presentation on "Nutrition and Well Being" was going to be, for me at least, one of the highlights of this forum.

Alas, the original presenter was replaced (at short notice I suspect) by a young nutritionist that I had never heard of. As she made her presentation I confess to sitting there and thinking that the information I was getting was of the most basic sort. I felt let down and very tempted to simply get up and leave.

Something I had been looking forward to for at least a week was, for all practical purposes ruined for me, as the material was irrelevant and generic pap.

In combination with the lack of functional air conditioning I literally started to feel hot under the collar, uncomfortable, dehydrated and irritable.

Sigh!

The second presentation, on "The role of complementary medicine and lifestyle in cancer
treatment." Dr Craig Hassed of Monash University was excellent.

The presentation was spiced with humour, anecdotes, personal reflections and what I considered to be sagacious advice.

While I still felt hot under the collar it was now due to the lack of cooling in the room and not irritation.

The third speaker - another change in the program was also exceptionally informative.

The subject he spoke about, namely Pain Management in a palliative setting, was most reassuring.

I guess as someone who has been diagnosed with and treated for cancer I have learnt to experience the ups and downs associated with pain during the course of treatments and recovery. I know that one of my deepest fears has been that as and when my cancer returns and takes it's inevitable course, my end days or longer, would be filled with unremitting pain and anguish.

It was with considerable relief that I heard that pain can be identified and controlled and that the suffering that I have had nightmares about, can be managed. I have to say that while I am not by any stretch of the imagination looking forward to even the concept of dying, it was reassuring to know that there are really competent people out there in the community that I live in who will ensure that my inevitable demise does not have to be filled with pain and suffering!

The next presenter A/Prof Desmond Yip was, as usual, and in my opinion brilliant. He had to cover the topic "Update on cancer related clinical trials". Anyone who is familiar with statistics and charts and number crunching will be aware that this is not the most entertaining topic.

In spite of the dry subject matter I thought that Desmond was able to squeeze as much as any human being could into the small slice of time that he had been allocated and I have to confess to feeling light headed as I reeled under the weight of the information with which I had been presented and depressed by the fact that so many studies result in either no positive outcome or are abandoned because they prove to be too dangerous to continue. Nevertheless my spirits were somewhat restored by the realisation that there are many dedicated people out there doing their best to find treatments and where possible cures for cancers and that the work is fast and furious and unfortunately very very expensive!

The next presenter, Prof. Malcolm Whyte was a surprise. No notes, no overhead presentation and no guff! His subject matter was "Life and Death" which in his view would probably have been better defined as "Thank God for Death"

What Prof Whyte succeeded in doing - at least for me is to bring home the point that everything living, to live, actually requires death on a grand scale to take place around the living organism indeed that it is when things do NOT die on schedule that we really have some issues. Cancer is one of those things. Cells that are supposed to die or be killed off as aberrant are not and what's worse they kill off healthy cells and compete with them for life and without intervention succeed only to eventually die when they have killed off their host.

I did not think I would like this presentation I have to confess I squirmed when the subject was announced. However by the end of the presentation I was able to place my own potential demise into the 'big picture' and actually see - if not necessarily welcome - my end state as being something necessary, normal and natural. In a bizarre sort of way it was helpful to have that stage of acceptance outlined before I really had to experience it.

I am afraid that for one presentation on Sexuality and Cancer I simply had to leave the room and get water to drink as my level of dehydration had passed to the point I could no longer deal with and the refreshing coolness of the air outside the presentation room was so welcoming that I stayed out for this whole presentation.

On returning to the room refreshed and ready to hear the last presenter on "Survivorship: getting back into life after cancer treatment" I was ready to be entertained with a thoroughly upbeat end to the conference on a topic that I thought of as the real reason why some of us were still able to attend and listen. We are survivors!

I was polite, I was in agony for the poor presenter as she struggled to understand and use the technology, I was appalled that anyone would face an audience of this kind and simply read off the PowerPoint Presentation slides instead of using them as background material to give the audience a glimpse of the high points. Eventually I am afraid that my patience was exhausted and I left the hall to wend my way to the outside of the venue where it seemed that even God was crying as there was a quite ferocious downpour of rain and headed to my car to finally get home and get re hydrated.

One lesson I have re-learnt from this experience. When you have a conference make SURE your first and last speaker are fabulous. One will keep the audience in their seats and be glad they have come and the second will leave them wanting more and anxious to come to another seminar or forum you organise.

If however you have the beginning marked by a lack lustre performance and the end characterised by a similar experience then there is a tendency for your audience to be less forgiving.