I was invited to attend this year’s British Sarcoma Conference in Nottingham. The British Sarcoma Group is the professional association of the specialist clinicians, nurses and supporting professionals who treat patients with sarcoma in Great Britain.
On arrival it is evident that there are a great many professionals attending the conference. It’s wonderful to be invited as a patient advocate with personal experience and to be amongst professionals that want to understand ‘the journey’.
Given that the conference is one day only, I’m pleased about the opportunities to speak with the professionals ‘offline’ ie outside of the workshops. Often shorter conferences don’t allow time to speak delegate to delegate as the agenda is often squeezed up.
However equally there are a number of workshops that I’d like to attend and have to make a difficult decision between them to fit the agenda!
The first workshop I attend is ‘Your treatment is over, now what?’. Andrew Shepperd first explains in brief his journey with Ewings Sarcoma and also about his time ‘after treatment’. He is a Trustee of the Bone Cancer Research Trust and is able to liven the workshop with discussion from his experience of other sarcoma patients and carers. As you know with an organisation like ‘Living Beyond Diagnosis’ this is a passion of mine and I know from my experience and that of speaking with others that the ‘now what’ is a huge aspect of a cancer diagnosis that isn’t tackled or spoken about.
A few of the points raised were:
- A sense of isolation when treatment finishes;
- Friends and family (all good intentioned) tend to stop asking how you are.
- Reframing the illness by looking at ‘problems’ in a different way. One person spoke of their recurring dream where they had been ‘watching’ their child’s wedding day but they weren’t present ie implied they were dead. However had learnt to ‘reframe’ it by putting themselves on the front pew in the dream and then learning to redream it regularly as if they were there.
- A need to notch down new events and future dates ie ‘investing’ in a new car; child’s first day at school; planning and booking a future holiday.
- Ask for help earlier about anxiety and worry. If you ask early it won’t be a surprise if you ask again when and if you need it.
- Guilt of being a ‘survivor’. This was a lengthy discussion and would need pages to discuss here. Suffice it to say that a great many people in the room felt ‘guilty’ about surviving when others they met during treatment/surgery didn’t. Dealing with the ‘why me’ can be extremely difficult.
- Counselling. It was interesting how many hadn’t thought of counselling. How many had asked for counselling but had had it declined. How many had received counselling also. It was felt that this should be more obviously on offer to all diagnosed patients in the UK and not restricted to just when in treatment but an ‘open door’ policy be activated.
- We also discussed ‘incurable -v- untreatable’. A big difference in the two and little understanding the general public as to what either really means.
My second workshop was ‘Key facts in decoding sarcoma research – lay to expert, in 45 minutes flat‘ by Chris Hiley.
No mean feat to explain any research project from bench to bedside in 45 minutes but Chris was able to do so. Also in a very humorous fashion! Chris spoke about policy and funding applications. About how decisions were made as to what would be funded and the difficulties sarcoma had in funding from main sources due to the rarity of the cancer type.
My final workshop was the ‘Patient closing plenary – Summarising and action points – patient delegates‘.
An incredible amount was discussed, ideas banded about with reference to spreading awareness of sarcoma with GPs, primary and secondary healthcare but also within the general population. We discussed at length the new initiative by Sarcoma UK of the ‘golf ball pilot project‘.
There was also discussion regarding the many types of sarcoma and how it was imperative that we work together rather than pit against eachother. However priorities should be directed not necessarily to the loudest voice or largest number of sarcoma.
Overall I was pleased with the content and action of the conference however felt that the sessions were slightly more rushed than I would have liked. They were all large topics and it was obvious from the lively discussions that there was a great deal to talk about and perhaps dig deeper in depth of many of the points raised. It was great however to have many sarcoma specialists in each of the workshops, taking notes and seeing how something that they may think quite small in a person’s journey can actually be the opposite and be challenging to moving forward.