I've mentioned this in the past but it is a growing very useful resource from Cancer Choices (formerly Beyond Conventional Cancer Therapies) that looks at complimentary treatments and rates them. It is well worth checking them out to see if they have researched a particular treatment. Each month they seem to add more. Check it out at: https://cancerchoices.org/resources/reviews-of-complementary-therapies/
By clicking on the Yes to Life heading 'Resources' you can also find 10 years worth of weekly radio shows plus a number of podcasts looking at particular therapies.
In the past I've done blogs looking at websites, books and more....rereading now they could do with an update but this blog looking at 'Best websites for cancer support'here.
Delighted to see this blog is moving up the charts from 26 last year to number 19 in the top 202 prostate cancer blogs on FeedSpot - ranked by traffic, social media followers and freshness. Check out the others at: https://cancer.feedspot.com/prostate_cancer_blogs/
When I first started this blog it was for me to get my head around diagnosis, options, treatments and thoughts rather than something carefully crafted to inform others. It remains very much that with notes and links that I've found useful - Of course it is great if readers also find it useful!
As I noted before, most of the top blogs are linked to organisations or products - I think only three of the other blogs in the top 30 are personal blogs. It also looks like very few take a focus of integrative health ie getting the best from conventional, lifestyle and complimentary approaches.
Delighted to see I am at number 26 out of 213 prostate cancer blogs on FeedSpot - ranked by traffic, social media followers and freshness. Check out the others at:https://cancer.feedspot.com/prostate_cancer_blogs/
Many seem to be linked to organisations or products and it looks like very few take a focus of integrative health ie getting the best from conventional, lifestyle and complimentary approaches. Furthermore to add more info to climb the chart it looks like I would have to pay a subscription to FeedSpot - but as I noted when I started this blog it was more for me to get my head around diagnosis, options and thoughts rather than something carefully crafted to inform others. Of course it is great if readers find it useful!
Finding out good information is a big challenge. A blog I wrote last November covered some of my go-to websites - see here (i). In that blog I mentioned the site 'Beyond Conventional Cancer Therapies’ (ii); well I’ve recently been exploring it further and it really does seem to be a very useful site. It is growing slowly but already has quite a lot of 'cancer handbooks' including prostate. It is a big site so I can recommend watching their video to show you around the site before beginning - see here (iii). There are pages on choosing treatments, questions for you’re provider, dealing with emotions, many integrative approaches, treatments and side effects plus blogs, stories, videos and more. To give a taster here are a couple of the useful pages for those of us with prostate cancer:
Prostate Cancer Handbook: this section opens with the lines ‘Prostate cancer is a prime example in which an integrative approach may be incorporated not only for reducing the risk of primary prostate cancer, but in treating and reducing risk of progression or recurrence.’ Yet my oncologist dismissed my talk of diets or exercise. The ‘handbook’ goes onto look at US clinical practice guidelines, then treatment approaches from noted specialists, then various protocols and a look under the headings of those 7 Healing Practices about what can help. This for example looks at an overview of the research about foods and prostate cancer, exercise, sleep etc. It is basic compared to what is available elsewhere but still a good starting point if newly diagnosed. There is also stuff on treatment and great summaries of natural therapies and also how to tackle side effects of some of the treatments; https://www.bcct.ngo/cancers-and-symptoms/cancer-handbooks/prostate-cancer
So PubMed?
PubMed has been my go-to site for reputable research; it requires a lot of energy to unpick what some of the research is actually saying - and how useful it is - but all that research in one place is a wonder. Indeed most research scientists use PubMed database - owned and operated by the US National Institutes for Health with more than 30 million citations for biomedical literature from MEDLINE, life science journals, and online books. It is widely recognised for its evidence-based medicine.
Last week in the newsletter from the Alliance for Natural Health (ANH) I read that PubMed is changing (iv). PubMed has a new version and that new version seems to make a load of research far less accessible. In particular the new PubMed lacks the dropdown menu of PMC - unlike the legacy version which gives you access to the other databases such as PubMed Central (PMC), PubMed, MedGen, Books, etc. Indeed the ANH carried out some tests and found that 'The number of articles found on the new PubMed following insertion of same search terms was often considerably less than when we searched the PMC database’.
There were more problems like key scientific papers missing, and they concluded: 'Whatever the reasons, we've demonstrated that PubMed is next to useless as a database and resource for the kind of subject areas central to our mission and vision'. So beware.
Facebook, Google and more
The PubMed news is worrying for those of us wanting good quality research about lifestyle and complimentary medicine. Google and other search engines including DuckDuckGo are already favouring the new PubMed engine in place of the legacy version that allows you to select PMC and other databases.
The issue goes much wider. We have seen how Facebook, Google and others are also reviewing and, some would say, 'censoring' content. I remember reading that Facebook was removing over 80 alternative health sites a couple of years ago - see here (v). Google last June 2019 also had removed massive numbers of pages. For example most of Mercola.com pages were removed from its search results yet the site had fully referenced content that had been at the top of the health search results for over 15 years. Google traffic to Mercola.com plummeted by about 99% in the weeks after that change.
ANH comments on such ‘censorship’ in a different article (vi): "Whilst not blocking access (yet), in doing this, Google is actively removing our freedoms - choice and health being just two of them. Google’s June 2019 update shifted algorithms to make it extremely difficult for individuals to find natural health information in organic searches. Instead, Google prefers mainstream, conventional (approved!) information and places these links in the top ranked search pages.”
It is, of course, very true that unverified health advice can be dangerous - and cost loads if people believe they’re getting a cure with something that’s not actually going to help them. But who is checking the fact checkers? What of free speech? This is a complicated area indeed!
ANH write that 'we have reached the era in which Dr Google may have more influence than the family doctor….Whether we realise it or not, we’re increasingly being faced with an ever-narrowing view of easily accessible information across the main media platforms as content is increasingly tailored and moulded to each one of us — individually. This not only can serve to blinker us from open debate due to our own searching habits, but can actually lead the companies in charge to decide what we should or shouldn't be exposed to’.
There are of course alternatives like the ANH site itself, where there is good info. One article by ANH showed what you can do to help them as they have had Facebook ads blocked; subscribe to their newsletter and share their website content (vii). ANH have several useful articles looking at these issues here. It seems very sad when so much good info is now available from reputable sources that that information is now being made harder to access.
One of those folks who have inspired me to connect, feel and think more deeply about cancer is Fi Munro. You may have seen my clip in a previous blog (i) where she shares from the heart how, when we start to live like we are dying, we can come alive. As she says on her website: "Choosing to live like you are dying is about embracing the fact that we all have only one life and deciding to make the choice to start truly living for today."
Well I’ve since then read some of her blogs, book and Facebook posts about her own journey and wow, what a journey (ii). It includes life and death situations, multiple organ removal, a new immunotherapy trial and so much more. Her heart-felt honesty, courage, humour, love, connection, insights and more are beautiful, terrible and extraordinary.
Fi's book
Fi has shared bits of her life from January 2016, when she was diagnosed at aged 30 with ’terminally’ Stage 4 B Ovarian Cancer. She writes about how to live well with cancer rather than being defined as potentially dying from it and how in her words, “My cancer diagnosis saved my life.”
Last week a local newspaper where she lives published a photo by Fi's husband, Ewan (iii). He took a picture of Fi slumped in the bath with a bowl floating nearby in case she felt she was going to be sick. It is a very powerful image indeed. The paper also included some of her Facebook post where she writes:
"Tonight I asked Ewan to capture a photo of the reality of what I’m going through - of what so many people with cancer are going through day in day out - it is so f***ing hard. When I’m out and about people see the impression of someone well. They see the make up and the clothes. They see the smile. They see what they want, or what they ‘need’, to see. “Daily I hear the words ‘but you look so well…’. Sometimes it’s a statement. Sometimes it’s more of a plea. But what these words fail to acknowledge is the pain and effort endured to make it through one more day....The hours of pain, of vomiting, of suffering, of fear, or the silent prayers that tomorrow will be a better day, that maybe if I put on my make up, get dressed nicely in my favourite clothes and smile wildly that I can convince my body to feel well too. Many of my evenings are spent in agony, vomiting, consumed by spasms of pain so extreme that morphine won’t even touch them. I spend hours with my head down the toilet or sitting in the bath, a bowl floating beside me to catch the inevitable waves of sickness. I am described as ‘brave’ or ‘inspirational’ but, in truth, I have no choice. I have no choice but to wake up each day and face this because it is my reality. It is the hand I have been dealt. But tonight I find myself reflecting that those that stand beside me, my husband Ewan, my loved ones, they are the truly brave and inspirational...because they do have a choice and yet here they are, beside me, holding me, every step of the way.”
Fi wrote on her Facebook after the article came out: "Well...if you’d told me four years ago that I’d be front cover of a newspaper, naked in the bath AND on a two page spread also naked in the bath I’d have freaked right out! Naked! BUT...now? Not so much! This is the reality of stage four cancer and I am so happy there is media out there willing to portray it...no longer is it being hidden behind closed doors, shrouded in secret and shame...this is what millions of us face every single day and I stand with every single one of you".
I have not experienced any of those symptoms with my cancer and I am not stage 4, but I hugely welcome the honesty with which Fi shares her journey. I know a friend who has felt far less alone because of such writing. But also for me, Fi manages to capture that balance perfectly between the reality of the situation and positivity. In a previous blog about climate change and cancer I touch on the dangers of trying to be positive all the time (iv). We all need to acknowledge, breathe through the grief, the fears and more as well as find those places of hope, gratitude and beauty.
As she comes through this latest challenges she asks that we see her in wellness; that is strangely so easy, as even as she writes I feel her zest for life.
I’ve heard Fi talk a number of times at Trew Fields Festival and she has this amazing positivity, passion and energy that is literally infectious. At one point in a talk she spoke with a panel of Stage 4 'thrivers' about the Four Minute mile (see video below), how it was seen as impossible but when one person broke the 4 minutes the following year many people did. Similarly many are told stage T4 is a death sentence yet many like Fi have long outlived what the medical profession had predicted. When Fi finished the talk a woman near me turned and said something along the lines of; “That woman has just given me a bucket of reality, positivity and hope all in one go”.
In her blog (vi), Fi muses on whether there is a stage 5 cancer; "What if cancer has a stage five after stage four? What if Stage Five is finding out what you are about. What if Stage Five is about LIVING?"
There is a lots more in her book, “How Long Have I Got?’ - and she has certainly impacted my own cancer journey - for example she reminds us of the obvious, that we are all terminal. And reminds us that our life is precious, oh so precious. This is the time to live.
I strongly recommend her book, Facebook and blog. Thank you Fi.
Ages ago I wrote a blog on the best three books when you are first diagnosed (see here); I could add many great books to that but another key source of info has been the internet. Wow has that been a delight and a challenge. So many sites with so much conflicting information. In this blog I will pick a few of my personal favourites but strongly suggest you also do your own research. Indeed even among my favourites I don’t always agree with what they are saying.
I’ve also not included a whole range of sites on nutrition, supplements and more as I hope to cover those in future blogs - nor have I covered some excellent newsletters that folks like Fi Munro, David Hamilton and Jem Ayers produce.
I would also welcome any suggestions for other resources; either in comments below or email me.
Key to blog:
1. Sites for info 2. Prostate Cancer specific 3. Prostate Cancer Blogs 4. Facebook groups (a) Support sites (b) Prostate Cancer specific (c) Other specific sites
1. Sites for info
CANCERactive
This site by Chris Woollams is a highly usable, well-researched information on cancer, its causes and possible treatments, that aims "to empower readers so that they can make more informed personal choices and thus increase their individual odds of beating the disease”. Chris also has a great overview look at prostate cancer:
This charity takes an integrative approach and aims to empower people with cancer to make informed decisions about their care options. They provide evidence-based information to those in need via their helpline, website, blogs, book (mentioned in my book blog here) and the reason they get a mention here - their radio show - see more about that in my video below from Robin Daly:
Chris was diagnosed with stage 3c colon cancer in 2003, at 26 years old. After surgery, he opted out of chemotherapy and used nutrition and natural therapies to heal. Since then he has become one of the key voices around cancer, health and healing. His blogs, and many youtube videos of both survivors and health practitioners, are a wonderful resource. Indeed I recommend subscribing free to his YouTube or newsletter:
This is one of the best websites for conventional treatment and some questions about complimentary approaches. There are also online community pages to ask questions:
This is a volunteer-led registered charity that is open to being contacted if you need help. It was set up in 2007, by men who had been diagnosed with prostate cancer, with the support of the Urology Department of Gloucester and Cheltenham hospitals. It aims to help men come to terms with the challenge of the diagnosis, and be better able to handle the difficult periods when it is often traumatic to talk to people, even those very close to you. They have some very useful videos on their website:
Health Unlocked has a specific prostate cancer online community with over 10,000 posts where folks pick each other's brains. A useful resource to check out medication, approaches and more:
Healing and Cancer film: And just to add a useful introductory video explaining prostate cancer and an integrative approach - it is basic and could challenge some of it but still a useful starting point from Radiation Oncologist, Dr Rob Rutledge https://youtu.be/ehdpeAK9nNY
4. Facebook groups
These are closed groups and you will need to request the administrator to join them. There are loads of them so this is only a taster of ones that I have found useful at different points in my journey.
(a) Facebook - support sites
Cancerucan
This was set up by a wonderful woman, Fiona Shakeela Burns - the site is a 'non-partisan, open-minded space to share all information and experiences regarding, health, wellbeing and healing related to cancer, irrespective of the chosen healing path’. Fiona also organises retreats; see my film with voices from her recent retreat here and the Facebook group at:
This is linked to the CANCERactive website, for people from all over the world, who want help from others who have experience of similar issues. The hugely knowledgeable Chris Woollams is one of the moderators in this group and will endeavour to reply to cancer and health questions directed his way:
This is Sophie Sabbage’s website and is for 'anyone who has read her book and found it supportive...anyone with cancer who wants to engage with and transform their fear, denial, grief, anger and despair...anyone who wants to discover what cancer may be trying to tell them about who they are and could be’. This site is by invitation only:
This was set up by a woman with loads of energy, Abbey Mitchell. In the group there are threads to many different types of cancers (see here) including prostate cancer - you can ask questions and contribution to that support thread.
Prostate Cancer Non-Surgical Treatments and Support
This is a controversial site as they note 'We are biased and do not support surgery for prostate cancer...It's not for everyone and that's okay”. However for discussions about stuff otherthan surgery it can be good:
Facebook has groups for pretty well every aspect; some great ones re nutrition and health but I just want to note a couple here.
Cannabis Oil Success Stories
This site was founded in May of 2012 to collect 'success stories from people who've used Cannabis Oil to treat their dis-ease. The group is now a hub of information for people to find answers to their questions regarding all aspects of Cannabis Oil, with a very knowledgeable core of individuals who've provided valuable information to thousands of people around the world':
Jane’s 'mission is to raise awareness and ignite a global revolution in cancer care with new emerging drug combinations using off patent drugs. There are about 60 drugs with anti-cancer effects and certain combinations are proving to be extremely powerful'. The site discusses how folks might get started but see first my video of Jane and link to her website here and Facebook at:
This is similar to Jane’s site as it is 'intended for sharing the latest available research and first-hand experiences on the use of existing, often times off-patent "repurposed" or "off-label" drugs for the purpose of treating various cancers for humans’.
