Monday, 15 October 2018

Whats the CCG? And how can we influence services?

So last week at the Cotswolds Prostate Cancer Support meeting there was over 40 guys plus some partners to hear Becky Parish, the Associate Director Engagement and Experience of Gloucestershire Clinical Commissioning Group (CCG). She started by giving a six minute overview of the CCG. You can see edited highlights in my film below.



There is also a great animation by the King’s Fund who give a whistle-stop tour of how the NHS works in 2017 and how it’s changing: https://www.youtube.com/watch?v=DEARD4I3xtE

Paving at Penny Brohn
The second part of the talk (see my film below) went into more about how the CCG engages with folk in Gloucestershire; this included how complaints and comments help shape services, the use of surveys, patient groups in GP surgeries, the Info bus that gets out and about across Gloucestershire and the Gloucestershire Cancer Patient Reference Group. I think this Cancer Reference Group is the only medical condition that has such a group and it is also not common to have such groups in other parts of the country. However it sounded like a powerful way to get the patient voice heard and has already helped set up a new Support Group for people with Colon Cancer and helped shape the MacMillan Next Steps programme.

I’m not sure I’m ready to dive into being a member of that group yet, but can see it could be a useful vehicle to raise many issues that I hear from others with cancer…although not all relevent to the Reference Group we always have some great questions and conversations at the Support Group. At the meeting last week here are some of the issues discussed:
 
Why is the message about diet/exercise/lifestyle not coming more from doctors? 
Why are folk cut off from both oncology services and Macmillan support when they seek private treatment? 
How can we improve consistency around PSA testing? 
Why can’t there be a more open conversation about complimentary medicine?
Could we do more PSA testing in the County?
 
I understand the Group will be inviting CCG representatives again so hopefully a chance to explore some of these issues further.


Thanks to Becky Parish for allowing me to film at very short notice; the editing is all mine so apologies if any of the editing makes Becky’s talk less clear.

Friday, 12 October 2018

Prof Dr Alexander Herzog: Hyperthermia and Cancer

I had transurethral hyperthermia treatment last November in Bad Aibling, a blog soon about that, but in the meantime I caught up with Alexander Herzog who used to work at the clinic I attended. He wasn’t there when I was, as he has established his own hospital in Nidda-Bad Salzhausen, where he has continued to specialise in oncology and develop hyperthermia treatments. His view is that some orthodox treatments showed benefits but that often the side-effects could be extreme. He therefore has worked on the use of complementary therapies to maximise the effects of orthodox treatments whilst reducing side-effects.




Alexander gave us a talk at the Guildford Wellness Day. I’m hoping that the whole talk will be available soon on the internet. He started his talk explaining hyperthermia was about heating up tumour tissues. The treatment has a long history - see the photo from an old medical text book using hot water bottles!

Of course it has developed over the years and there are various approaches that can enhance chemotherapy and radiation treatments but also used to treat cancer. Alexander took us through a whole series of case studies like the photo below which shows a rectal cancer disappearing - and explained some of teh science behind it.

In the talk Alexander looked more closely at orthodox, complimentary and alternative approaches. He feels that there is often mutual demonisation with orthodox being seen as being about science and aggressive cold, harmful treatments, whereas alternative medicine is soft, safe, warm and about emotions. He thinks this feeds uncertainty in patients and sometimes leads to wrong decisions.

Alexander suggests that up to 80% of all patients with cancer are looking for complimentary and alternative treatments - yet most don’t tell their oncologists. One of the reasons for this he suggests is that doctors have such little understanding or training of complimentary medicine and many are dismissive. Certainly some complimentary treatments don’t have lots of studies but many do - and many can significantly impact on quality of life.

Health practitioners are often coming from different positions. Orthodox medicine wants to ‘hit' the cancer whereas complimentary is about building the strength of the body to tackle the cancer. In the talk Alexander outlined some of the complimentary treatments that offer some important benefits, including mistletoe therapy, Japanese mushrooms, Ozone therapy and more. See my previous blog about the mind-body revolution that is unedrway - and that Dr H is very much a part of.

Chris Woollhams has a great website with info about cancer. His pages on hyperthermia are worth a look. See his overview at: https://www.canceractive.com/cancer-active-page-link.aspx?n=3078
See more about Dr Herzog at: https://www.hospitaldrherzog.de/

Thursday, 11 October 2018

Grant Hatch; what matters in life?

Grant talking at Wellness Day in Guildford
It was great to hear Grant Hatch talk about his cancer journey and in particular the importance of finding meaning in life. I caught up with him at the Guildford Wellness Day where I also spoke with other thrivers like Kris Hallenga and Jane McLelland. In my interview with Grant below he shares his top three questions to consider.

The author, Dr Kelly A. Turner, of the wonderful ‘Radical Remission, Surviving Cancer Against All Odds’ (i), looked at over a thousand cases of radical remission, people who have defied a serious or terminal cancer diagnosis with a complete reversal of the disease. She pulled out common factors amongst those who had healed their cancer and found that nine of these emerged more often; one of these was having strong reasons to live. 

In her research Kelly found that this desire to live ‘had to come from the deepest core of his or her being, and it has to be unquestioning.’ This is again about that mind-body connection, the mind leading the body. We know the power of this, a thought or emotion can lead to powerful hormones being released that can have beneficial or detrimental effects on our immune system. Kelly notes that to get excited about living we often need to get in touch with our deepest desires or callings, putting creativity back in our lives.



Well I’m fortunate to have much meaning in life, but have recently been wondering about the joy in it. There is a study from the University of Pittsburgh showing that a sense of joy, is the second most important factor for predicting cancer recovery (ii). Yet somehow I manage to be stuck too often in my 'to-do list world' of doing this and doing that. Yes there are many times in my day to appreciate nature like the mushroom I found in Standish Woods (see photo), laugh with a colleague or love the smell and taste of my morning coffee. I’m good at joy like that, but often find stress creeping into my schedules….and we know very well the connection between stress and cancer (iii). How can there be more joy?

Standish Woods
I can feel another blog coming on in the future about stress and how we manage it, but for now there is no question that cancer has given me a wake up call. Grant’s talk was a great reminder that we need to consider what does really matter. For me this is all linked, so means revisiting deepest desires, finding better ways to manage my ‘to-do list’, looking again at stress and much more! Cancer certainly gives us lots to think about  - and work on!

This blog also appears on the website of the Holistic Centre in Surrey.

Notes

(i) Kelly A. Turner, of the bestseller ‘Radical Remission, Surviving Cancer Against All Odds’ (2014): https://radicalremission.com/about/the-book/

The 9 key factors identified were:

Changing your diet
Taking herbs and supplements
Taking control over your treatment
Having a social support structure
Releasing suppressed emotions
Following your intuition
Increasing positive emotions
Deepening your spiritual connection
Having Strong reasons for living

(ii) Survival hazards analysis in first recurrent breast cancer patients: seven-year follow-up:
https://www.ncbi.nlm.nih.gov/pubmed/3186895

(iii) Impact of stress on cancer metastasis:

Wednesday, 10 October 2018

Meet founder of breast cancer charity Coppafeel!

I recently heard the totally inspiring Kris Hallenga talk about her diagnosis of ‘incurable’ breast cancer at the age of 23. Two months after this diagnosis she started to set up CoppaFeel! She saw that there was not much info about cancer for young people and many thought that breast cancer only affected women over 50. Since then she has been on a mission to ensure that more young people catch their cancers earlier so that there is a higher chance of surviving.

I find hearing such stories of how people have managed their cancer and found purpose and meaning in their lives totally uplifting. Below is my two minute interview with Kris after her talk in Guildford - and I also recommend her Do Lecture talk which tells her story and how she set up the charity, Coppafeel! See:
https://www.thedolectures.com/talks/kris-hallenga-live-a-life-that-you-love
 


Of course it is worth mentioning that men also have some breast tissue in their chest and under their armpit, so it is important they get anything unusual checked out too. Almost 400 men are diagnosed with breast cancer in the UK every year.

 1 in 8 women will be affected by breast cancer in their lifetime.
 Around 400 men are diagnosed every year.
 Breast cancer is still the most commonly diagnosed cancer in women under 40.*
 Every year in the UK, around 5,000 women under the age of 45 are diagnosed with breast cancer.*

*Statistics from Breast Cancer Care and Coppafeel website. See more about Coppafeel! at: https://coppafeel.org/

Sunday, 30 September 2018

Can we starve our cancer?

Oh my... this book so resonated with me and was a great read. I learnt lots more about cancer and it's helping me rethink my approach - but more of that in a moment. I first heard Jane McLelland speak at Trew Fields then again met her last weekend in Guildford. You can see my short film below of Jane outlining her approach.


At both these talks and in her book Jane shares her amazing story; how 16 years ago she was diagnosed with stage 4 (terminal) cervical cancer and used a combination of cheap, easy to use drugs with minimal side effects - many of these are off label drug combinations. Off label as they are not prescribed for cancer, for example Metformin is used for diabetes while Statins are for people with high cholesterol. Jane hasn’t had a cancer ‘episode’ for years. 

Jane writes that there are around 60 drugs with anti-cancer effects and that certain combinations of these are proving to be extremely powerful. Furthermore new studies are showing remissions with late stage cancers and raising the possibility of cures, especially when the drug combinations are used at earlier stages. We have also seen that their appears to be no genetic answer to cancer; instead altered metabolism, the increased uptake of glucose and/or glutamine has been found to be common to all cancers.

The idea of drug combinations makes sense. This approach is used with HIV and AIDS. Cancer cells are constantly adapting and in order to grow they need sources of energy, mainly glucose with access to proteins and fat. If you starve a cancer cell of its energy from glucose then it redirects to other sources of energy like glutamine and fat. So we need to see how we can block the ‘fuel pipelines’ with our own drug cocktails. 

Jane's Metro Map
Jane has produced an easy-to-follow ‘Metro Map’ that shows how this can be done using diet, supplements, off label drugs and exercise. This is the main part of her approach although there are other key elements that need tacking into consideration. I would strongly urge getting hold of Jane’s book. Here are a couple of key things I learnt which now seem commonsense;

1. Cancers can be fuelled in different ways. For example brain cancer and colorectal cancer are particularly responsive to glucose while prostate cancer is fed by fat and protein. This fits with a story I heard about a guy with prostate cancer who followed a Ketogenic Diet (ie a high-fat, low-carbohydrate diet that mimics the metabolic state of long-term fasting). He found his PSA climbing but when he looked more at reducing fats, that led to his PSA falling again. It would seem those with prostate cancer (and those with breast cancer) should perhaps avoid a Ketogenic Diet with it’s high fats(i)? Or perhaps take more care over the fats we eat? That of course doesn’t mean stopping a low glycemic diet so sadly Millionaires slices, Victoria sponges, white rice and more are not in my diet! Virtually all cancers respond to a reduced glucose intake. More on nutrition and diets in a future blog.

2. There is a distinction between supplements that prevent cancer and those that treat it. Some antioxidants are useful for prevention, like low oral doses of Vitamin C and E. However, there is a tipping point in cancer progression when, in Jane’s words, they ‘switch allegiance and support the enemy; they help promote and fuel cancer’s resistance to apoptosis (death). I’ve stopped low dose oral Vitamin C supplementation! I did have Intravenous Vitamin C (IVC) following my Transurethral Hyperthermia in Germany, which behaves in a completely different way to low dose - and would consider it in the future if part of a whole plan to tackle my cancer. IVC has been shown to be very effective at killing cancer stem cells, at high dose it is a pro-oxidant producing hydrogen peroxide around the tumour, so stem cells cannot survive, but as Jane warns, it is risky if not part of a combination strategy. Indeed I recall mixed information regarding IVC and prostate cancer - probably because IVC can push the cancer up the glutamine and fat pathways instead?

Jo Lawrance cartoon

It is interesting to notice my first reactions to this approach. Drugs?! I wanted to take a more natural approach to healing and didn’t drugs have nasty side-effects? However the more I’ve read the more I consider this integrative approach to have value; drawing on the best of orthodox and complimentary medicine. This seems to me another example of the mind-body revolution that is underway.

Next steps for me include some more reading then finding out more about treatment (ii). See more of Jane when she spoke at Trew Fields in 2017 before her book came out: https://youtu.be/93F5zIe6PTU


Notes
(i) See "Dr. Gonzalez Dismantles the Ketogenic Diet For Cancer” including short film interviewing Dr Gonzalez:  
(ii) See Jane's great Facebook group at:  https://www.facebook.com/groups/off.label.drugsforcancer/

This blog post was updated on 4th October 2018 to make it clearer regarding Vitamin C.

Sunday, 23 September 2018

Why is Yes to Life the first charity to get a logo on this site?

Sue Cesare, Executive Director, Yes To Life
Since diagnosis, just over a year ago, I’ve come into contact with quite a number of the cancer charities through workshops, events and more. Some have disappointed but others have impressed me like Penny Brohn and CancerActive. However in terms of a national charity that provides support, info, funding and a helpline I wanted to start with highlighting Yes to Life. It is a good resource, particularly if new to cancer and Integrative Medicine - as is their book ‘The Cancer Revolution. Integrative Medicine. The Future of Cancer Care” by Patricia Peat.

One of the things I like about the charity is the integrative approach. It does seem extraordinary to me how little attention oncologists seem to pay to Complimentary and Alternative Medicine (CAM). A study five years ago found that almost a third of UK cancer patients have used CAM since their cancer diagnosis (i). This figure is similar to the one found globally for prostate cancer (ii). In a talk at the Guildford Wellness Day yesterday Professor Dr Alexander Herzog suggests that up to 80% of cancer patients are looking at CAM. Others have also suggested similar high numbers of cancer patients using CAM.

Cartoon by Stroud artist, Russ
What is perhaps concerning is that most patients don’t feel able to tell their physicians’ about their use of CAM. Dr Herzog suggests there is a problem of confidence; in part due to physicians lack of knowledge around such treatments and their often negative attitude. Indeed most doctors have had little or no training in CAM - and for that matter in exercise or nutrition (iii).

There are also relentless attacks by media about alternative medicine ‘cancer quackery’; some of it justified. However this has helped create a climate where people feel less able to share with their doctors any CAM they might be trying. 

Interestingly I just read a new blog by Jerome Burne on the Yes To Life’s website about perhaps an even bigger deception by the press (iv). It was revealed in the BMJ that the UK national press had been engaging in a mass Fake News exercise about something called the Cancer Drug Fund. The press reported the exact opposite of the truth suggesting that this Fund was good at approving safe and effective cancer drugs. Incredibly 1.4 billion pounds of taxpayers money was spent on very expensive cancer drugs for no benefit. 

Amazingly there is still no call for enquiries into this shocking story.

As I noted in my last blog a Mind-Body Revolution is coming, but it is slow! Yes To Life and their Integrative approach are part of supporting that move. To me it makes total sense to use both Orthodox and Complimentary approaches, but we all need to consider very carefully the treatments on offer. It is not just CAM quackery, there are also some very dodgy treatments as this Cancer Drug Fund story illustrates.

Here’s Sue De Cesare in the film below introducing Yes To Life. I met her yesterday in Guildford at Surrey’s Wellness Day with it's ‘acclaimed holistic exhibition’ and their series of speakers about cancer. More from that day coming soon to this blog!

Yes to Life have added this blog to their website here.


Notes

Wednesday, 29 August 2018

A Mind-Body revolution is underway

Drawing by Jo Lawrance
Do we become what we believe? How much do our views help determine our destiny? 

In this blog I hope to touch on some of the wider beliefs that come from our culture and our conditioning. Many of these we generally don't question. Such values and beliefs are spread by our society, in part to help us maintain social order; control cannot be maintained by physical means alone. These values and beliefs play a huge role in shaping our perceptions of our reality. We grow up with this, so it is hard to step back and see what is influencing us. 

Lama Nicholas Packard, author, teacher, healer and a regular visitor to my home town, Stroud (i), describes this saying;
“People, like fish who cannot see outside of the waters where they swim, cannot see outside of the culture in which they have been brought up. As a result they find themselves unable to question their values and beliefs because they are products of their own conditioning."

Drawing by Jo Lawrance

 

So what are some of these broader influences on our lives in the West? 

 

The first I will mention probably wont be new to many reading this blog; the mind-body split. This dates back to ancient Greeks, but it was Descartes who is credited with creating the scientific separation of mind and body. This was, in part, to avoid being accused of challenging the Church whose domain included mind and soul. 
The separation of mind and body has been part of our culture ever since and while things are changing it still plays a powerful role. The NHS continues to distinguish between mind and body; services are segregated and there often little interaction between them. For example not one of the doctors I’ve seen regarding my prostate cancer has mentioned anything about how the mind can impact on health, one even seemed dismissive when I tried to start a conversation about what else I could do.
A second key influence on our lives has been the discoveries of Isaac Newton and how he saw the world in terms of mechanics. This has led to human beings also being considered in terms of mechanics. We are seen more as machines than as living beings, hence cancer treatment is seen in terms of chemical interventions, surgery or some form of technology. Lama Nicholas outlines the consequences of this. He says: 
“...taking responsibility for one’s community, one’s welfare, and one’s health and wellness - as well as taking care of oneself in terms of nutrition, disease prevention, and exercise; healthy living habits; calming the mind; and self-healing - have been deemphasised, discarded, and ignored."
In terms of illness (mental, social or physical) we too often seek and see 'outside causes' of disease. We are not invited to look inside for causes; our mind, thoughts, ego and desires are not seen as playing a part in our destiny or health. Yet in ancient times things were very different; human thoughts were seen as playing a key role in the causes of illness.

A Revolution is coming 

 

Today many are waking up to seeing things differently, seeing mind and body as one. Complimentary and alternative medicine already hold a more holistic view, but some would argue a revolution is now taking place in the Western medical community. Candace Pert, nearly twenty years ago (ii) established the biomolecular basis for our emotions and the connections between mind and body that were not imagined before by Western medicine. More recently Dr Lissa Rankin’s book (iii) highlights how changing thoughts can change behaviours, which change your biochemistry. For example the study of epigenetics has now proved that our genes are actually fluid and influenced by our environment.
Professor Oliver Howes, a consultant psychiatrist, writes about emerging evidence that schizophrenia could be a disease of the immune system (iv), while there is new research linking low levels of chronic inflammation to depression. He says;
“In the past, we’ve always thought of the mind and the body being separate, but it’s just not like that. The mind and body interact constantly”.
Penny Brohn near Bristol
Cancer charity, Penny Brohn, note that UK oncology services are also seeing changes from the impact of holistic palliative care services, directives from central government and increasing pressure from patient-led groups and other cancer charities. 

Earlier in the year I was fortunate to join Penny Brohn's two-day residential ‘Living Well’ course with my partner (v). This was all about integrative care or “whole person cancer care”. They use the Bristol Whole Life Approach which looks to address the needs of the person as well as treating the disease - and I love the way it takes account of all aspects of our lives. It is a great tool to help build our own ‘treatment’ plans. Indeed I can recommend folk with a cancer diagnosis signing up for the course (and very wonderfully they are available free of charge although they welcome donations).
Copyright image of Bristol Whole Life Approach with permission from Penny Brohn
More recently I have joined the exercise group of the Gloucestershire Next Steps programme (vi), an NHS specialist cancer rehabilitation service, but what is interesting is that it is also looking wider at what can work alongside treatment like surgery, radiation or chemo. The course covers nutrition, stress, exercise and more; a recognition that we can play active roles in our healing and that the mind has a key part to play. The Next Steps team are hoping the NHS will now extend this two-year pilot programme, which I understand has already seen significant positive outcomes for participants.

It really does seem a revolution is underway, Western medicine is shifting, all be it very slowly. Many more of us are finding we can play an active part in our journeys to wellness.


Notes 

Penny Brohn

(i) Read his book "Riding the Dark Horse, And the Fall of Man” by Lama Nicholas Packard (2017) and see more including videos of his talks at Hawkwood College near Stroud: https://lama-nicholas.com/

(ii) “Molecules of Emotion” by Candace B. Pert (1999). See more at: http://candacepert.com/

(iii) “Mind Over Medicine” by Dr Lissa Rankin (2013). See more at: http://lissarankin.com/

(iv) See more re Professor Oliver Howes at: https://www.theguardian.com/commentisfree/2017/nov/12/mental-physical-health-link

(v) See more about the Approach at: https://www.pennybrohn.org.uk/why-choose-us/what-we-do Also 'Integrative Whole-Person Oncology Care in the UK' by Catherine Zollman with Axel Walther, Helen E. Seers, Rachel C Joliffe and Marie J Polley (published in the Journal of the National Cancer Institute Volume 2017, Issue 52 November 2017); https://academic.oup.com/jncimono/article/2017/52/lgx002/4617817?guestAccessKey=947aa9d2-c100-4927-85b1-6006d5edb3d0

Whats the CCG? And how can we influence services?

So last week at the Cotswolds Prostate Cancer Support meeting there was over 40 guys plus some partners to hear Becky Parish, the Associat...