Cancer Self Care Group

Years before we started the Manchester Cancer Self Care Group, Francesca was running her own website called www.cancerselfcare.com.

We thought it would be a good idea to distinguish between the Group and her original website, for greater clarity. So now, when you first land at www.cancerselfcare.com you will find everything to do with the Group.

Francesca’s informative website is just a click away, at www.cancerselfcare.com/home.html.

Francesca and Judy

At our meeting in May we had another interesting session with Hannah Mackay BA, PhD, MRSS, CNHC introducing Shiatsu.
We found out a bit more about shiatsu, received a short demonstration and practised using acupressure points which may counter symptoms such as low energy, nausea and headaches. We also practised some simple Qi Gong exercises which are suitable for almost everyone, and help you ground yourself within your own energy.

We had a great discussion at our April meeting about homeopathy, kindly facilitated by Trish James and Annie Hirsch (many thanks to them both). The discussion included:

• the differences and similarities between homeopathy and other complementary therapies – we were particularly interested in the similarities between what homeopathy calls the “vital force” and what Chinese medicine calls “chi”
• seeing homeopathy as energy medicine
• how such a small amount of remedy can have an impact – and the answers coming from physics (particularly quantum physics) rather than chemistry and biology
• there have been some random clinical trials on homeopathic treatment – to read more about research and homeopathy see the Society of Homeopaths website
• how many famous people use homeopathy

At our March meeting we had a good discussion about spirituality, what it means to us, what the spiritual challenges are and our sources of spiritual support. The notes are here (pdf).

Jude is a member of a working group with Macmillan on the issue of spiritual support and she’d be glad to hear from anyone with any concerns on the subject.

At the February meeting we had a very interesting session where John Shiers talked about his recent experience of being diagnosed with mesothelioma and how a particular type of healing yoga had helped him.

He will be running small groups using this yoga so please contact us if you are interested.

At the January meeting we shared what was going on for us, as we all continue to make sense of the shock of diagnosis and the ongoing challenge of coming to terms with our new states, especially when our treatments continue to make us ill.

We went on to talk about our experiences with the NHS and the doctors and nurses that look after us. It’s clear that the system is really stretched (and this is before the cuts really bite!) and people talked about waiting hours for chemotherapy, in one case not finishing at Christie’s until after ten at night – such long days when you’re already feeling ill is very distressing.

People talked about being messed around with the appointment system and about one part of the system not talking to another. We have to keep on top of managing our own care. Us having to chase things ourselves adds to the stress we’re already under, although some had experience of specialist nurses and consultants’ secretaries being particularly helpful with this.

We had experience of pathetic people skills from doctors and nurses – a lack of empathy, of doctors being cold and rude, of looking out of the window the whole time in one consultation.

The rhetoric says they want empowered patients but the reality is not many can handle it. We want our fear to be acknowledged and to have a sense of someone sitting alongside us, making eye contact and answering our questions as we ask them. We recognise that we are one of many and that it might be scary for them to see “please save me” in our eyes, but we think its part of a doctor’s job to be able to communicate clearly and with compassion.

We heard examples of behaviour that were unprofessional and incompetent, of punitive, patronising and insensitive comments being made. We are too ill and tired and scared to make complaints and just wish that medics were operating in a kinder way.

Given this was a very short discussion, there was a lot to talk about and we said we would re-visit the topic again in future meetings.

We had another good meeting in November, making music with Annie. Well … the music we made probably depends on your definition of what music is! But we meandered through a landscape of sounds, and hugely enjoyed playing with all the different instruments available.

Many thanks to Annie Harris for bringing all the kit and for making it such a good session.

We also reviewed where we are up to with the group as our first year comes to an end. We decided to:

• Change the venue – next year’s meetings will be at the Synthesise Centre, a more contained and cosy environment in East Didsbury. It’s upstairs above the Gaia Centre, so less accessible for people with mobility problems. We hope that doesn’t cause a problem for anyone, but we think it will be more comfortable and more conducive to the discussions we might want to have.
• Carry on meeting from 7 – 9 on the second Thursday of the month. We discussed the option of meeting from 6 – 8 and that would have been easier for some (sorry Annie) but thought the consensus in the end was for 7 – 9.
• Some of the 2011 sessions could be: homeopathy; acupuncture; shaitsu; sacro-cranial therapy; yoga; healing journey; hypnotherapy, when we would bring a practitioner in to discuss with us how these might help us.
• To alternate these sessions with discussions where we talk about our cancer experiences based on themes, like: coping with doctors; fatigue and sleep; coping with chemo and nausea; being ‘brave’; and whatever else comes up.
• Maybe go out for a meal more often than just at Christmas!