Wigwam Cancer Support Groups and Forums

The wonderful Ticking off Breast Cancer blog posted this blog of mine a month or so ago - I've copied it below. The Breast Cancer blog is by Sara Liyanage who published her story in a book with the same name as her blog. A big thank you to Sara - before sharing the blog below about Wigwam I wanted to add my preferred definition of Integrative Medicine is that it 'combines the best of conventional, lifestyle and complementary approaches to improve health and wellbeing'. I guess the word 'alternative' sometimes conjures up less well researched approaches - see my discussion on that here. Anyhow now to my blog:

This is a guest blog from Philip Booth, the coordinator of Wigwam – part of the Yes to Life cancer support community. Wigwam is a cancer support group with a difference. It is a community of people living with cancer coming together to explore and share information and experiences with the aim of empowering themselves to gain control over their lives. Wigwam is a place for people to meet locally or online. Wigwam is a place of safety and care, which is flexible and supportive, to meet others sharing similar issues and to learn about Integrative Medicine. (For those of you who don’t know what integrative medicine is, it is a form of medical therapy that combines practices and treatments from alternative medicine (such as exercise and nutrition) with conventional medicine (such as chemotherapy and radiotherapy).

Overwhelmed. Terrified. Bewildered. Just some of the emotions I felt following my prostate cancer diagnosis over three years ago. I didn’t know what to do. This was compounded by a number of different treatment options. What was the best way forward?

Just after the diagnosis, I asked my oncologist about diet and exercise. I was told that I was pretty fit and to keep doing what I was doing. I knew, that while this advice was well-meaning, it did not fit with what I knew; there is so much we can all do to improve our health and wellbeing.

So I set about learning. To my surprise I came across lots of studies that showed significant benefits. Exercise got lots of mentions – no doubt blog readers here will know of studies like the one in 2007 of 1,490 women with early stage breast cancer. They found that those who exercised, like walking for 30 minutes each day and ate more than five servings of vegetables and fruit per day, had a whopping half the recurrence rate after nine years compared to those who didn’t (i).

Taking an integrative approach

It was some months after learning about exercise that I came across Yes to Life – and discovered they are the UK’s leading charity seeking to improve access for people with cancer to Integrative Medicine. They provide support, information and financial assistance to those with cancer seeking to pursue approaches that are currently only available as private healthcare.

You may well have come across them recently, as they have just put on two great online events with forty plus global experts; the ‘Your Life and Cancer’ weekends (ii) – and we were delighted to have had Ticking off Breast Cancer as one of the many supporters. It was a wonderful coming together and sharing of evidence-informed healthcare to achieve optimal health and wellbeing.

I have so appreciated that the charity is all about combining the best of conventional, lifestyle and complementary approaches. This made so much sense to me and I’ve been on a learning path ever since that has given me a much greater understanding of my cancer and what is possible.  Indeed, the more I have read, the more the UK’s focus almost exclusively on surgery, radiotherapy and chemo seems such huge missed opportunity.

Around the world other countries have embraced the research into cancer that goes beyond our conventional approach. In China, for example, if you aren’t taking herbs as part of your cancer treatment then that is seen as negligent, while in parts of Europe, mistletoe injections and hyperthermia are recognised by many medical doctors.

So where can we talk and learn safely?

There are not many places where it is possible to discuss other options. When I spoke to Yes to Life nearly three years ago, I found out they had plans for developing ‘Wigwam’ cancer support groups that focused on an integrative approach.

Within a few weeks, three of us came together in Stroud. We’ve not looked back, and ten of us meet each month to share where we are at and explore different approaches together. It is not about giving advice, but has been a wonderful, confidential place of support to explore challenges, opportunities and share information.

Why call it Wigwam?

Well the idea came from Richard Mayon-White, who had cancer in 2016, he said “a wigwam provides shelter that is flexible, with an informal style and not fixed in any one place. The way that the poles of a wigwam lean inwards to support each other illustrates how a successful group can offer care and help to its members”.

One Wigwam member said they hadn’t realised how lonely they had been on their cancer journey, while another said; “It was such a relief to find an open and supportive group, totally on the same wavelength when it comes to the challenges faced by those of us looking for a more proactive and personalised approach to healing ourselves”.

Eighteen months on and I joined the Yes to Life team to help the charity establish more groups. Our first online Wigwam group has just been meeting and growing. Feedback is very positive and we are planning more. If you are interested you can complete the ‘Get Involved’ page on our website and we will be in touch.

Free Forums and Webinars

In addition to the support groups we also now host live expert-led online forums every other week, the podcasts of which, are then available online. Topics coming up include sugar, toxins, dance, appetite and an integrative approach. We also have a weekly mindfulness drop in and more planned. See more at: https://www.wigwam.org.uk/events-and-sessions

Philip Booth – Wigwam Coordinator for Yes to Life

Philip has a background in Social Work, managing care services, local politics as a councillor and for the last eight years has worked for a charity helping residents in Gloucestershire build more welcoming communities. His own journey with prostate cancer has led to a passion for helping people come together to support each other in more proactive, personalised approaches to health and wellbeing.

For more information please take a look at the websites of Wigwam and Yes to Life . In addition, Wigwam is on Facebook: wigwamsupport and Philip blogs occasionally about his prostate cancer journey.

Notes

(i) Greater Survival After Breast Cancer in Physically Active Women With High Vegetable-Fruit Intake Regardless of Obesity: http://ascopubs.org/doi/10.1200/JCO.2006.08.6819

(ii) https://www.yourlifeandcancer.com

Please note that I, as Ticking Off Breast Cancer, do not accept responsibility for the content of the guest blogs. The information and content provided in all guest blogs is intended for information and educational purposes only and is not intended to substitute for professional medical advice. Please seek professional advice or speak to your medical team if you have any questions about the issues raised in this guest blog.

True self-care

We often come to self-care when we are exhausted or get a diagnosis - and certainly it has been that way for me at times in my life. A while back I had thought to write a blog building on what I've written before about self care - see here blog re getting the basics right - the blog I imagined would have mentioned all those things that can help some folks like cold showers, fasting, saunas, good food and so much more. It was going to be about doing some of the things we wouldn't choose to do, may not be easy to do - and how alcohol, procrastination and other stuff can get in the way.

Then I came across this quote by writer and poet, Brianna Wiest; "True self-care is not salt baths and chocolate cake, it is making the choice to build a life you don’t need to regularly escape from.”

And that got me thinking.....no doubt Covid-19 has helped...when holidays, visits to friends and more are not an option...I can't escape in the ways that are familiar.....this has perhaps been a gift (and a challenge) to help me think about what I need and want to do....which goals are key and which ones to drop.

Cold shower

This has been compounded some weeks ago when I faced voluntary redundancy in one of the two charities for whom I work....I've loved this job and been there over eight years. Sadly the new jobs they offered, subject to interviews, did not make my heart sing. I agonised for weeks before saying no to the new jobs. I am fortunate to have other options but all this raises great questions about how we look after ourselves and purpose.

Indeed having strong reasons to live is one of the key factors that Kelly Turners' research identified as being key in radical remissions. So how can we become the person we know we want and are meant to be? Where does self care fit with all of this? Oh my perhaps it is easier to go and watch a film!

As Brianna says: "someone who knows that salt baths and chocolate cake are ways to enjoy life – not escape from it".

Luzita Hill dies; ‘patients not criminals’ #cannabis campaigner

I was so very sorry to hear that Luzita Hill died on Saturday. It has been 8 years since her breast cancer diagnosis and she was told she wouldn’t live beyond 3rd June 2017. I met her at Trew Fields in 2018 and 2019 and her wonderful energy totally inspired me - she shared with me some of her campaigning work for the use of cannabis in cancer treatment. Her warmth and passion shone through and I loved her down to earth, no-nonsense approach.

Luzita has been an extraordinary, fearless campaigner who has been at the forefront of campaigns for Medical Cannabis. She chose the title of #cancercriminal because she was forced to break the law to treat her cancer. A lovely post on her Facebook page said: "She fought the prejudice, fear and misinformation. Squarely putting a mirror up to the hypocrisy of politicians who make money from growing it commercially while at the same time denying it to their own people so desperately in need of its medicine. When she stood up to speak, people listened, they dare not because she wasn’t going to back down". 

Luzita converted her skeptical integrative health team, including GP, to buying into her belief that cannabis has been the key to her on-going vibrancy. Even last month she was appearing in videos as a cannabis patient advocate talking about treating symptoms: https://youtu.be/Yznfn_8qZV8

Indeed once you start looking into this whole area there are a host of articles about cannabis and its use in treatment of cancer and symptom management (i) - including lots in PubMed. More research is needed as we still need to learn more about its effectiveness, dose, side-effects and more but there is more than enough evidence out there to make it readily available. This blog post is not for a discussion on that now - am sure I will do a post in the future. 

As part of her campaigning, Luzita spoke in Parliament with the United Patients Alliance, a Not For Profit organisation run by chronically ill patient volunteers, talking about cannabis. See her speech here: https://youtu.be/Vz6kUEqhb_0

Luzita fully supported the campaign for the trial launched in 2018 to target 20,000 patients with cannabis. Indeed she was signed up to participate and I’m told she became legal a few weeks before dying with her first cannabis description for pain relief. However disappointingly the trial has got off to a rocky start with only 12 prescriptions being made in the first year (ii) and few, if any after that up to this summer(iii). It seems despite growing evidence of how supportive medical cannabis can be, there is still a reluctance to prescribe in the NHS. Luzita's work is changing that - many of us need to continue her work.

Luzita also lived to see the introduction of the Cancard on 30th November; patients with a multitude of health conditions will have the right to apply for Cancard (iv). Journalist Roland Sebestyen, writes: "The card, which is backed by police commissioners, communicates to police officers that a person should not be arrested for consuming self-sourced ‘illegal’ cannabis as a medicine. Up to 1.1 million people could be eligible for a Cancard by 2021, removing the fear of arrest and prosecution for possession. All patients with a health condition, that is currently being privately prescribed for at a high cost, will be eligible for the card”. 

 

In terms of Cancer and this card, the conditions that are included are: "Anxiety, Chemotherapy-induced nausea, Cancer-related appetite loss, Depression, Palliative care." I’ve heard very little about this card so would love to hear how this is working?

 
Here’s another film with Luzita sharing how she got interested in cannabis: https://youtu.be/zoAbTPISpt0

Thoughts with her husband, Terry and her family and close friends. Thank you Luzita for all you did - know we will continue the work.

 

Notes

 

(i) https://www.canceractive.com/article/can-cannabis-cure-cancer

See also Tedx talk and one story about its use with pain: https://youtu.be/jyAGlb8PMRc 

(ii) https://www.theguardian.com/society/2019/nov/03/medical-cannabis-patients-refused-drug-nhs-legalised 

(iii) https://www.theguardian.com/politics/2020/jul/01/anger-at-nhs-failure-to-prescribe-cannabis-oil-medicines 

(iv) See more at:
https://canex.co.uk/over-one-million-patients-could-avoid-arrest-for-cannabis-with-cancard/

https://hightimes.com/news/cancard-provide-cannabis-med-card-u-k-patients/

https://cancard.co.uk/