A label is more than a label

We have talked lots in past about the placebo effect...the power of the mind...well I loved hearing about this test where participants had their hormone levels measured before and after consuming different types of milkshakes. One of the shakes was labelled as huge in calories - a super sized indulgent shake while the other was labelled as fat free and guilt free.

It was exactly the same milk shake. Yet the results show that the participants hormone levels reflected what they believed to have just consumed and were wildly different depending on which milkshake they had. This is more evidence that our mindset can meaningfully impact on our physiology. You can check out the research by Alia Crum et al at: https://pubmed.ncbi.nlm.nih.gov/21574706/

Gratitude

Research has shown how important the role of gratitude can be...increasing our resilience, directly impacting on our health (like lowering blood pressure and increasing immunity), opening up new opportunities, improved relationships and so much more.

A while back I came across Oliver Sacks' published essays before his death that were collected in Gratitude. This particular quote so resonates and couldn't resist posting here: “I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and travelled and thought and written. I have had an intercourse with the world, the special intercourse of writers and readers. Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.”

Image from the amazing Rukmini Poddar who wrote: "Choosing gratitude is not my default mode by a long shot. Really, being grateful is not something that comes easy for me and it’s a moment by moment choice. But having had a heavy heart the last two weeks is teaching me that there is always an option of being grateful despite it all. And that’s empowering." 

Rukmini Poddar is an artist, designer, and educator. Her passion lies at the intersection of emotional wellness and creative storytelling. See more at: https://dearruksi.com

Out-Witting Cancer exhibition

 

This new exhibition is in 'real life' in London with some of it online - see more - particularly the videos here: https://www.crick.ac.uk/whats-on/exhibitions/outwitting-cancer

I've only had a chance to look at the online info and it is very much a reflection of the current conventional approach - and gives some great insights to where research is going and how they are researching some cancers.

It does also just touch on broader topics like diet but not in any depth or, in my view, providing any useful info. However several of the videos are interviews with Karen Vousden from the Francis Crick Institute and Chief Scientist, Cancer Research UK - she studies the influence of the body’s metabolism – how cells change food into energy – on the development of cancer cells. She rightly points out that we do not understand
risk well, for example she suggests one sausage a week 'almost certainly' won't give you cancer but if people are told that eating a sausage causes cancer then they will not trust other messages. Indeed sensationalising risks are very unhelpful.

However we also don't know fully the impact of food on cancers; there is still loads to learn. So I think the comments around food might suggest to some not to worry too much about bacon, alcohol etc in moderation.....I certainly agree worry is counter productive but also think that we still need some care around changing the way we eat. There seemed to be no mention - maybe I missed it - about what we do need to be eating...people living with cancer (and indeed many other conditions) are long overdue advice and support around good nutrition....not to give it can only reinforce perceptions that many of us are eating well...the evidence however suggests otherwise. See my last blog on nutrition.

Similarly the info about treatment approaches are all conventional - with a focus on surgery, radiotherapy, chemotherapy and immunotherapy. As we know there is a whole world of lifestyle and complimentary treatments/approaches that are peer-reviewed and will impact beneficially on people living with cancer.

 

Keto, Low Carb or what for prostate cancer?

This post is not going to attempt to answer the question about which diet to follow...indeed it is so individual...the science is still in early days but it is clear that nutrition can play a key role. There are a huge number of podcasts and webinars available covering the growing research - earlier this year we had a Nutritional Congress at Yes to Life (see here) and it was totally fascinating to see how this field is growing...but all this info can be confusing...

One key question is around fats - do they feed prostate cancer as the work of Jane McLelland suggests? In particular she highlights saturated fats that may be a key problem element - see more in a previous blog here. However there are many who argue that some saturated fat is important for the body. So where does that leave keto.....

I liked the latest podcast with Robin Daly, Founder and Chairman of Yes to Life, talking with oncologist, Penny Kechagioglou, Senior NHS Clinical Oncologist to nutritional therapist Carol Grainger. She talks about the impact diet may have on treatment - and warns about the dangers of taking a keto diet - we need to know what keto means as it is so widely used for different approaches - and can be dangerous. However new research shows that the right kind of keto diet with low carbs, ie only 20 grams a day, has shown cholesterol improved and prostate cancer PSA doubling time lessened significantly. Hear more on Podcast number 6 at: https://yestolife.org.uk/cancertalk-podcasts/

Back in 2007 and earlier we've had indications that low carb may help - so it is great that more evidence is finally emerging that says yes to low carb -  we still need more research to help us understand what that looks like.....and for many of us support would be needed if we are to cut carbs to only 20grams a day. Certainly nutritionists warn that considerable care is needed if you are to embark on such a plan.

Where to start? Nutrition, fear and exercise?

I've been meaning to write about my diet/nutrition - but it is such a huge topic it feels daunting to start any blog on that topic. I've therefore been delighted to see Penny Browns recent series of webinars with several focusing on prostate cancer - several done in conjunction with Prostate Cancer Research and Tackle Prostate Cancer. 

The nutrition webinar is basic and for me was close to where I started in terms of my own diet - since then I've built on that and do various other things to support it like additional supplements, juicing and some key foods. I'm also more rigourous around avoiding or eating certain foods than this webinar suggests but it is for each of us to find our own path. There is just not one size fits all diet for cancer. However this webinar is a great place to get hold of the basics - it is easier then to add/tinker/change....

I've written lots before one exercise as it is absolutely key - again this video is great at spelling out the key stuff you need to know.

Lastly I've also covered fear a few times as that is another key factor to try and get sorted - I love what Sophie Sabbage has to say in this webinar.

Big thanks to Penny Brohn. Here are the links to the three webinars that seem a particularly good place to start if recently diagnosed:

Here's the one on diet: https://www.pennybrohn.org.uk/resource/eating-well-with-prostate-cancer-webinar/

Here's the one on the importance of exercise; https://www.pennybrohn.org.uk/resource/prostate-cancer-physical-activity/

Here's the fear webinar: https://www.pennybrohn.org.uk/resource/impact-fear-cancer/

You can also check out there other webinars at: https://www.pennybrohn.org.uk/webinars/

You might also like to see my blog on 'Getting the basics right': https://myunexpectedguide.blogspot.com/2020/08/getting-basics-right.html

The Alkaline Water Myth?

Hey folks water is a whole big issue but in this post I wanted to look at Alkaline Water as I've had several people recently musing about whether or not it is something to consider with cancer. I don't give advice here - I'll leave that to others, but here are some of my thoughts and link to a video that might interest....

When I was first diagnosed with cancer several people recommended I get an expensive alkaline water machine including a former GP. I spoke to suppliers at a Festival and they were convincing. There were many claims also on the internet about how alkaline water can help weight loss, detoxification, pH balance, bone health, hydration, heart health, energy levels and even claims around cancer - it is said that cancer cells can no longer develop in an alkaline environment. 

I bought pH strips for a few quid to test my urine, thinking this might help inform my decision - but I had nagging doubts. I couldn't see how it could work.

The pH scale is how you measure acidity; zero being the most acidic and 14 being the most alkaline. A pH level of 7 is neither acidic nor alkaline. The human body apparently has a controlled pH level of about 7.4 - but levels vary in certain parts of the body. The stomach needs to be acidic between 1.35 and 3.5 to break down food and it seems urine is also naturally acidic. 

So testing pH of urine doesn’t give an accurate reading of your whole body’s pH level. So the strips were a waste of time in terms of this - but have been put to good use in chemistry experiments with a granddaughter.

It seems to me if a person drinks alkaline water it may increase pH, but only very temporarily - as it goes through the stomach it is surely impacted by digestive juices so that the contents all have the same pH? Since most uptake of water happens in the intestines, the water that enters the bloodstream will have the pH of the small intestine digestive juices rather than the pH present at the time of drinking. So how can alkaline water impact?

So it seems consuming alkaline water has little effect on changing the pH of the blood, but a few studies have also looked at the effect of alkaline water or diet on the development or progression of cancer. Very Well Health report on 'a large systematic review (combining 252 abstracts) looking at alkaline water and cancer' that 'there did not appear to be any evidence that consuming this water had any effect on the initiation (development) or treatment (progression) of cancer. In only one of the studies was any significant association found, and that, in turn, was slight (between pH and bladder cancer)....A Finnish study looking specifically at men with bladder cancer and an alkaline diet, however, found that a lower urine pH (reflective of the alkaline measures) did not significantly reduce the risk of developing bladder cancer.'

It is true cancer cells typically alter their environments and do seem to prefer a more acidic environment; converting glucose/sugar into lactic acid. The acidic pH levels of the area around cancer cells appear to help tumours grow. However the alkaline water has to go through the stomach so I am not clear on how it could work? Whereas an alkaline diet could have more impact because of the food nutrients rather than the alkalinity?

Dr Kevin Connors dismisses alkaline water and comments in his book 'Stop Fighting Cancer and Start Treating the Cause', "Vegetables and whole fruit help to bring balance back to the system and are alkalizing to the tissue, not because they register higher on the pH scale (lemons are extremely acidic) but because of what they do inside us. They are filled with nutrients and enzymes that aide healing."

Overall it seems alkaline water appears to have little effect on the development or progression of cancer. I didn't buy one of those expensive machines and it highlighted to me early on in my cancer journey how important it is to do research and check everything out. There is so much out there from so many well-meaning folks - as well as less-meaning folks!

If you want to hear more about this issue I think an interesting place to start is this video: Markus Rothkranz interviews James Sloane who explains acids and alkaline substances and how they affect our bodies, in particular why not to use baking soda or alkaline water as healing methods: https://youtu.be/7O6GhVCvVgE

Last chance to submit to Gloucester City's Commission to Review Race Relations

Click to enlarge or go to link here

I've just submitted evidence to this Commission to Review Race Relations - see here - it closes tomorrow - this Commission came about following the deeply disturbing killing of George Floyd in the spring of 2020. As the Commission note it is a stark reminder that so much more needs to be done to address anti-black racism in our communities and society. 

I hugely welcome that Gloucester City Council passed a motion in July 2020 in support of ‘Black Lives Matter’ and resolved to set up a commission to review race relations within Gloucester: "The Commission has been established for an initial period of 12 months and will be a forum to reflect and gain a better understanding of experiences of racism within Gloucester, and to identify actions that can improve the lives and opportunities for those experiencing racism and the disadvantages they face because of their race and/or ethnicity".

My blog last year for Yes to Life charity looked at some of the issues that I covered in my submission: https://myunexpectedguide.blogspot.com/2020/07/yes-to-life-stands-in-solidarity-with.html

In particular I included the survey of 100 people of colour with cancer: https://www.blackwomenrisinguk.org/100-women-survey

I am aware Gloucestershire authorities are working with BAME communities and putting considerable energy into improving the situation. However the picture painted by Black Women Rising and my conversations with several members of BAME community in Gloucester, show there is considerable more work needed. I hope this Commission leads to further improvements in Gloucestershire - we so need them.

Impact of radiotherapy 15 months on

Finishing Radiotherapy March 2020

Well its been nearly a couple of months since my last blog on this site - a collection of reasons plus busy times - it has also now been 15 months since finishing radiotherapy - and also deciding to finish the hormone treatment - so it seemed a good place to review where I am at. Some might also be interested in my previous blogs on radiotherapy by clicking on the tag.

I guess it is worth saying that although the radiotherapy was aimed at getting rid of prostate cancer we don’t know whether that is the case - medical teams talk instead of being ‘in remission’; in other words no sign of cancer. Also no doctor can say for certain whether your cancer will come back. Each cancer is different and the success of your treatment will depend on many things. 

Certainly what figures that are available indicate cancer does return in a number of cases; one article suggests up to 40 percent of patients with prostate cancer will show signs of recurrence (i). It is extraordinary that reoccurrence after treatment for early stage prostate cancer is still not properly recorded. This is critical info if we are to understand which men are most at risk of reoccurrence and which treatments are most effective.

However we must remember generally relative survival rates are high. There are many factors that can lead to more likely recurrence like cancer cells in lymph nodes, larger tumours, non-localised cancers, higher grade cancers, diet, men under 60 years and more. Hence, to my mind, an integrative approach where we are still actively working on health is the best call to reduce the likelihood of a return!

Update 22/5/22 - re photo of bell ringing - see this blog re riding the bell - a view that resonates with me: https://blogs.bmj.com/bmj/2019/06/04/jo-taylor-its-time-to-call-time-on-the-end-of-treatment-bell/

Stats

I’ve quoted before the wise words of Sophie Sabbage about avoiding statistics, that she writes in her book, “The Cancer Whisperer”. She says “staying away from soul-sapping, fear-inducing information that discusses indicators, but not inevitabilities.” That doesn’t mean we should settle for half-truths - as she says “Don’t let your oncologist or doctor protect you from the full facts. Push them for answers until you are satisfied you know it all.”

It is also worth noting that fear of reoccurrence can also be hugely damaging. To quote another statistic - approximately 7% of cancer patients develop severe and disabling fear that includes constant intrusive thoughts and misinterpretation of mild and unrelated symptoms (ii). 

I have written before about fear and it can have a huge impact on our lives - it certainly has on me in the past. Things are much easier now but there is no question that fear is just under the surface at times. It remains, in my view, one of the number one areas to target in terms of an wholistic approach. To quote Sophie again; “If you don’t take hold of your fear your fear will take hold of you.” She talks about people dying of fear and shock and the need "to pass through it.”

I have been able, in the past, to attend one of her day workshops and just a few weeks ago caught this excellent webinar from Penny Brohn UK talking about how to reduce the impact of fear on medical outcomes and wellbeing. It is an excellent video and I do recommend a watch. See here: https://www.pennybrohn.org.uk/resource/impact-fear-cancer/

PSA results

I’ve had three PSA tests at 3 month intervals, 0.4 then 0.3 then 0.3 a couple of weeks ago. This doesn’t mean a lot at the moment and it could possibly fall more for up to two years after radiotherapy although it looks like it has possibly stabilised? If it rises more than 2.0 then that is when we have to take action. You can see more about PSA tests and bounces after radiotherapy in my blog where I talk about why I stopped hormone treatment here. 

Side-effects

Cancer Research UK list long term side effects from radiotherapy and hormone treatment:

Radiotherapy: Problems passing urine, Leakage of urine, Erection problems (impotence), Frequent or loose poo, Inflammation of the back passage (proctitis), Swollen legs or scrotum, Cancer of the bladder or lower bowel, Weaker pelvic bones, Tiny cracks in the bones, Low levels of vitamin B12 (iv).

Hormone treatment: Tiredness, Problems getting an erection (impotence), Hot flushes and sweating, Weight gain, Memory problems, Mood swings and depression, Bone changes, Risk of heart problems (v).

Radiotherapy side effects can and do occur for many years. Research has shown that men treated for their localized prostate cancer have been found to have similar long-term side effects regardless of treatment type. Both surgery and radiation therapy had similar levels of urinary incontinence, erectile dysfunction, and bowel urgency 15 years after treatment (vi). However the hormone side effects such as hot flushes and sexual problems, are likely to improve after treatment stops - but it can take several months for side effects to improve, although I have read that some men never notice any improvement. This is particularly so if hormone treatment is intermittent.

Urine problems

Well I won’t dwell on this but suffice to say I am still needing the loo three times each night and too often in a day, sometimes with urgency but only very occasionally with a tiny leak. It is enough to keep me at the pelvic floor exercises! There are also some bladder training exercises where you learn ways to wait longer between needing to urinate and passing urine. I’ve not got on well with these, as the moment I am thinking about waiting makes me want to go more. 

Cutting down on caffeine and alcohol are also recommended - well I have very little alcohol indeed and can’t take my daily joy of a double espresso away from my day (see my blog on coffee here). Drinking water is important - this seems counter intuitive but limiting your fluid intake makes incontinence worse as it reduces your bladder's capacity.

I have been offered Tamsulosin as it can help urinary symptoms following radiation therapy (vii). However I didn’t feel comfortable taking it as I was managing mostly OK, plus I was concerned about a load of new side-effects and would I then become reliant on it?

Perhaps one of the worst impacts of urine problems like leakage is the accompanying shame. I’ve fortunately not had those moments like some guys who have talked about 'peeing their pants'. Certainly learning how best to manage it successfully can go a long way in easing the pain and embarrassment. I’m hoping that my challenges won’t get any worse!

Sex life

In terms of a love life - certainly the treatments have had an impact - something that perhaps doesn’t get talked about enough? But it isn’t just erections - for many there are other side effects that get even less mentions - climacturia, arousal incontinence plus orgasmic disturbances such as altered orgasmic sensation, anorgasmia, and orgasm-associated pain (dysorgasmia) (viii). 

One article I welcomed was by Elvin Box sharing his prostate cancer story and the impact it had on his sex life: https://www.jodivine.com/articles/perspectives/winning-back-our-sex-life-after-prostate-cancer-a-personal-story-by-elvin-box

There are quite a few other resources online - here for example is a video by Dr Holzapfel who looks at some of the effects: https://pcstoronto.ca/2020/12/03/video-there-is-sex-after-prostate-cancer/

Sex is clearly an important part of our lives - for some much more than others - there is also evidence that it can play a part in healing. See a video by Jem Ayres looking at the 'Healing Power of Orgasm’: https://youtu.be/4wp7GYc4yok  You can also see also my film of Jems' cancer journey here. 

It is also worth noting that there is now research confirming that masturbation boosts your immune system (ix). However I guess if sex is an option then you don’t need such studies to encourage you back to it after treatment?! Then again perhaps too often fear and other stuff gets in the way?

Bones

We know radiotherapy has an impact on bones - and so does the hormone therapy yet it was my Functional Medicine practitioner that advised I get a scan. My GP readily agreed but I wonder why it isn’t standard practice?

A DEXA scan is a bone density scan that uses low dose X-rays to see how dense (or strong) your bones are. They are often used to diagnose or assess your risk of osteoporosis, a health condition that weakens bones and makes them more likely to break. As well as being quick and painless, a bone density scan is more effective than normal X-rays in identifying low bone density (x).

It seems that your T scores are important; they show how your bone mineral density compares with others. Scores of +1.0 are good. Numbers between +1 and - 1 show normal bone mineral density. Scores between -1 and -2.5 indicate Osteopenia (thin bones). Less than -2.5 indicate Osteoporosis (porous bones) , eg. - 2.7, -3.0 etc. And -3.0 shows  serious Osteoporosis. 

Well I have osteopenia. Spine is minus 1.9 and hips are minus 1.6. 

Update 2.10.23: See link between gut and bone health at: https://chriswoollamshealthwatch.com/your-illness/gut-bacteria-bone-density-and-osteoporosis/

So what is recommended?

Hoping dance will be poss again soon!

1. Exercise. Like muscle, bone gets stronger when you use it. The best moves for bones are weight-bearing exercises that force your body to work against gravity. That includes walking, stair climbing, dancing, and lifting weights. I do all those except the weights.

2. Diet. High-calcium foods outlined on most websites include:

• Sardines and salmon, with bones

• Tofu

• Dairy products such as yogurt, low-fat milk, and cheese

• Green vegetables such as broccoli and collard greens

Dairy is largely a no-no for me as it’s linked to prostate cancer so I do try and manage to boost other calcium rich foods. My GP recommended looking at one of the calculators online to see if you are getting enough calcium: https://www.osteoporosis.foundation/educational-hub/topic/calcium-calculator

Interestingly according to the calculator I am getting not even half of what I need. However a lot of things I eat aren’t listed eg sprouted seeds, spinach, kiwi, chia, flax seeds, herbs, spices and more - some of these are very high in calcium - indeed seeds and leafy greens we do lots of and they are best for calcium. Nevertheless the DEXA has led me to think more carefully and increase herb use, occasional organic sheeps yoghurt and oily fish.

3. Vitamin D. Time outdoors in the sunshine each day helps as do some foods. Here is a list from one website:

• Fish such as salmon, tuna, and mackerel

• Fish liver oils

• Beef liver

• Cheese

• Egg yolks

• Fortified breakfast cereals, juices, milk products, yogurt, and margarine

However some of those foods I am avoiding. A vitamin D test a while ago showed I was at the low end of normal; many nutritionists and functional medicine practitioners like to see levels much higher than that. I have been supplementing around 3,000/4,000iu per day on advice from my practitioner.

4. Don’t smoke, drink less, cut back on salt and reduce caffeine. All great but caffeine intake is sacred at the mo!

5. Supplements. There are various lists online of supplements that can help, but I am very cautious about suggesting any as it is so individual. We also need to be aware that some will interact with other aspects of our health. In the past for example I have taken ashwaganda - a wonderful widely used Ayurvedic herb to reduce stress and so much more - however after taking for a while I discovered that some practitioners view it as oestrogenic - not something someone with prostate cancer wants to be taking. So do do your research!

In the past I have taken boron (recommended by doctors in Germany) for bone health, at present I have been recommended Algae calcium by my Functional Medicine practitioner - incidentally she recommended it some months before the DEXA test.

The GP is recommending another DEXA scan in 5 years. I am of course hoping the results will show an improvement!

Fatigue

Fatigue doesn’t get a mention by Cancer Research UK as a long term effect of radiotherapy. I wonder why as many other websites note fatigue, although most say it typically fades within three to six months. Talking to a number of people with prostate cancer I wonder how accurate this is. The US Government's National Cancer Institute website notes fatigue caused by radiotherapy can in some patients 'last months or years after treatment ends’ (xi).

Doing a quick google search - not always advised - shows research into prostate cancer patients having radiotherapy and hormones showed 'long- term high level of fatigue and high prevalence of chronic fatigue’ (xii).

Cartoon by Russ after reading this blog

My own experience is that levels of tiredness are greater now than before the hormone and radiotherapy treatment. Not by any means dreadful but certainly not back to normal. Of course it is hard to unpick cause and effect as we’ve also had a very strange last 18 months with Covid. I was also made voluntarily redundant from a job I loved and despite having a new role and opportunities, that clearly does have an impact on health.

Another key factor with fatigue following radiotherapy is Vitamin B12 deficiency (as noted by Cancer Research UK). For the last five months I have taken some supplements particularly chosen for my situation as care is needed regarding B supplementation as there is also a link with increased prostate cancer risk. I also do seem to have a bit of a challenge re methylation - more of that in another blog - but it is a key process underlying epigenetic (see earlier blog here on epigenetics).

Lots of factors will impact on tiredness but this is an area that needs more research - there is still not an understanding of why treatments cause fatigue.

Other side effects

Another factor well researched but not listed above is the loss of muscle mass and strength (xiii).  Hormones tamp down the production of testosterone that plays a role in developing and maintaining muscle mass. Resistance exercising is critical here and I can't say enough how important that is to do. I struggled significantly to restore muscles to pre-radiotherapy levels despite a good exercise programme. 

I could also note some very minor rectal inflammation and possibly some memory challenges - but hey I am getting older and also know stress is a key factor with memory. I’m not sure I can put that down to the treatments!

Notes:

(i) https://zerocancer.org/learn/survivors/recurrence/

(ii) https://www.cancertherapyadvisor.com/home/tools/fact-sheets/cancer-recurrence-statistics/

(iii) https://myunexpectedguide.blogspot.com/2020/04/finished-radiotherapy-should-i-continue.html

(iv) https://www.cancerresearchuk.org/about-cancer/prostate-cancer/treatment/radiotherapy/external-radiotherapy/long-term-side-effects-external-radiotherapy

(v) https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/hormone-therapy/side-effects-men

(vi) https://www.cancernetwork.com/view/long-term-prostate-cancer-side-effects-similar-surgery-radiation

(vii) https://www.sciencedirect.com/science/article/abs/pii/S0360301699002461

(viii) https://pubmed.ncbi.nlm.nih.gov/33318637/

(ix) https://bigthink.com/sex-relationships/health-benefits-of-masturbation

(x) https://www.nhs.uk/conditions/dexa-scan/

(xi) https://www.cancer.gov/about-cancer/treatment/side-effects/fatigue/fatigue-pdq

(xii) https://www.tandfonline.com/doi/pdf/10.3109/0284186X.2015.1127417

(xiii) https://www.cancerresearchuk.org/about-cancer/prostate-cancer/practical-emotional-support/hormone-symptoms/sex-hormones-weight-muscle

Building a community of peer-led support groups

My last job was being part of a Community Building team in Gloucestershire. There are some perspectives on community building that can be useful for thinking about growing more peer-led support groups. In this blog I look at some of the work of Bruce Anderson, a community activist, leadership coach, co-founder of Community Activators and the Core Gift Institute (i) - this blog was first published on the Yes to Life charity's Wigwam Cancer Support Groups website and you can go to that website to see more about growing the Wigwam community with its support groups, well-being groups and Forums. 

Building our Wigwam community
Our Wigwam community is growing, but what do we need to give attention to if we are to build a resilient community? 
I have been fortunate to join community activist, Bruce Anderson on several day workshops to explore what makes a community welcoming and strong. His work with many people has led to identifying 'three glues’ of community that interrelate:
1. Everyone has unique gifts and capacities.2. It is the responsibility of the community to welcome those gifts.3. Creating hope.
It is when each of these three glues get attention then building community becomes easy. People want to connect. In this blog I want to cover them briefly as I think they have a big part to play in how we run our Wigwam groups.
'Rediscovering Welcome'

Joining a new group or attending an event can sometimes feel unnerving. We may not know the rules, the other people attending seem to already know each other and we might be anxious about making mistakes. If we are having a difficult time in life in general then this can make attending a new group or event even more difficult.
In many places, the power of recognising and welcoming someone new can be overlooked. The “welcome” seems to have been lost, reduced to insignificant gestures: a duty rather than something much richer. Perhaps like some of the hospitality industry where strangers are welcomed only if they have the money and credit cards. It seems we have moved somewhat away from the original old English meaning of welcome: ‘Wilcuma’ – to accept the stranger with pleasure.
Yet in some cultures the power of ‘welcome’ is still held held in very high-regard and the stranger on the doorstep is welcomed as one of the highest deities; there is, for example, an Indian saying that ‘Guest is God.’ Author and Patron of Yes to Life, Sophie Sabbage (ii) describes the Zulu greeting ‘Sawubona’, which means ‘I see you.’ The response is ‘Ngikhona’, said looking into the other’s eyes, means ‘I am here’ (iii). As Sophie says, this is about how ‘our hearts need to know we are visible to others as acutely as our bodies need food, water and rest.’
Creating welcoming spaces is a key step to ensure we can all feel a sense of belonging and worthiness. Shining a light on our welcome can help us uncover, restore and re-grow our welcome. Parker Palmer, a world-renowned writer and activist (iv) says that it is not about training people to be welcoming and hospitable, you just have to uncover people’s barriers to it - or rediscover it. We sometimes need help to do this; 'to see again with fresh eyes'. We are often too busy and have other things on our mind, but by recognising and removing the barriers we can rediscover the full wonders of welcoming.
One woman who spoke to me about the Wigwam Support Groups said she had not had the courage to phone for some months. She shared that she was not sure what to expect and whether the groups would be right for her, whether she knew enough or would fit in. Yet when she managed to get over her initial concerns and talk to one of us, the fears melted away. She even said it was the 'warm welcome’ that helped her take the next steps. Now we don’t get that right all the time, especially as what one person might find welcoming, may not be right for another. 

Definition of Welcome (Bruce Anderson): ‘The initial and ongoing interactions, with people and environment, that result in a feeling of belonging, and a willingness to engage.’

Bruce Anderson’s work with organisations around welcoming often starts with looking at where we learnt how to be welcoming and a chance to share a story when people felt unwelcomed. Employees are given the space to look at many different aspects of welcome. For example, signage; if the place is not welcoming on the outside, then people arrive on edge wondering how it will be. Is it easy to know what to do when you arrive? How are the phones answered? Similar questions can be asked of any groups including Wigwam even where they are already providing a warm welcome. There is often more we can do, especially thinking about the welcome to new members (v). 
Unique gifts
To welcome means to really ‘see’ the person walking through the door, to see their gifts and to be open to receiving help, wisdom and guidance from the person we are meeting or helping. There is a wonderful piece of old wisdom that says that helping is similar to breathing; you have to breathe in as much as you breathe out if you want to sustain your life. Indeed I have in the past thought I was there to help someone, only to find that it was my life that was being changed by the interactions.
Bruce Anderson writes on his website: “Cultures and faith traditions, many centuries old, used specific methods to identify and use gifts in their members. Now, modern neuroscience and positive psychology have backed up older wisdom traditions by proving that individuals thrive when they are able to find meaning in their lives by knowing and giving their gifts.” What are gifts? They are all those things that makes us unique; our passions, interests, experiences, skills and more. They are the tools that help us grow our community. It can take time to recognise gifts and support to help people offer them - all the while remembering that “A gift is not a gift, until it’s given.” 

“Every living person has some gift or capacity of value to others. A strong community is a place that recognises these gifts and ensures they are given. A weak community is a place where lots of people can’t or don’t give their gift.” Jody Kretzmann, ABCD Institute

I have been struck time and time again by the warmth and generosity of Wigwammers; their willingness to share their experiences and knowledge, to support one another, our many Forum experts offering their time free, people writing blogs for us or sharing social media. How can we do more of this?
Creating hope
The third ‘glue’ of communities is hope, and how you can sustain it by placing it at the heart of the whole community. This could be a whole blog in itself and is such a key part of going forward.

Found on beach, Cardigan, Wales

To take one example, many of us at Yes to Life and Wigwam have been excited by the huge healing potential that is offered by an integrative approach to cancer care. We see signs of change; this month is the first Integrative Oncology UK Conference and we saw over 700 come to the Your Life and Cancer event last year looking at integrative approaches. This is not just about hope for more changes and improvements to cancer care, but also bringing hope to individuals. 

“Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out”. Vaclav Havel

This blog hardly does justice to the idea of these three glues but I hope it gives some food for thought as to how we can continue to build our Wigwam community. We are open to suggestions, thoughts, ideas - and of course ‘gifts’. In further blogs it would be great to explore more about how we can create safe spaces for people to share and grow.
See more about Wigwam at: https://www.wigwam.org.uk
Notes & references
(i) For further information visit: https://www.coregift.org/ and https://www.communityactivators.com
(ii) ‘Lifeshocks, And How to Love them’ by Sophie Sabbage 2018
(iii) Terry Tillman writes about this connection and the use of this greeting in the Sci-Fi film, Avatar. He says: ‘The eyes are the windows to the soul. When we connect with the soul, who we truly are, all things positive are present—joy, acceptance, compassion, understanding, cooperation, loving, peace of mind, humor, ease, simplicity and more. That is the nature of the soul. And isn’t this what we truly want, a positive experience in life? Add these moments together more frequently, and for longer periods and we have more of what we want.’ See more at: http://www.finerminds.com/consciousness-awareness/samburu-greeting-terry-tillman/
(iv) See more at: http://www.couragerenewal.org/parker/
(v) ‘Our Door is Open: Creating Welcoming Cultures in Helping Organizations’ audio cd by Bruce Anderson and Community Activators. There is also a much earlier paper which doesn’t, in my view, fully capture the richness and possibilities that are covered in the audio: ‘Creating Welcoming Places Workbook’ (2004) by Bruce Anderson and Dean Paton: http://www.communityactivators.com/downloads/WelcomeWorkbook.pdfBruce talks about how a leader is needed to champion this welcoming work, but that it is also crucial that everyone agrees with the aim to be more welcoming. Bruce sees four domains or areas of focus that are crucial in helping to build a welcoming culture. Here are some notes from his work to give a flavour of those domains:• Storefront and building interior; if the place is not welcoming on outside people arrive on edge wondering how it will be. Is it easy for them to know what to do? How is the signage? Do the signs describes what to do, not what we don’t want people to do? How is the entrance? Water to drink, flowers, paintings, cleanliness, lighting and more can all be important. How welcome would you feel?• Customer processes; this is all the interactions with people, like how the phone is answered, the first greeting, how accessible is information about the group or organisation and whether waiting times be reduced. As Bruce says, ‘a person feels welcome to the extent they feel respected’.• Community Engagement; how welcoming is the group or organisation to other businesses and others in the community?• Employee support; employees have to feel welcomed in their own organisation if they are to be welcoming; this is about recognising gifts, induction processes, rituals for leaving, and how to challenge employees who do not act in a welcoming way.