First run – since broken toes, feeling jaded with this project BUT exciting new t-shirts!

This afternoon I went for my first run since I broke 2 toes a month ago. Obviously I kept it gentle and ran 2 mins then walked 45 seconds. It was blisteringly hot and I was so worried about getting back into running but it was actually awesome. I really enjoyed it, J dog loved it, all over a success. Not fast, I’m a slow runner get over it. But I was happy with the overall pace on a sandy beach after no runs for 4 weeks and toes that are still healing.


ther than that a busy day, work, housework etc. I’m still feeling the frustration of having to make everything especially at end of a day. I think the excitement of this new project wore off and now I’m in the “oh my god this is so much work phase”. For example just getting this blueberry mousse (frozen blueberries with silken tofu) date balls and tumeric latte took 15 mins including washing up. Not a huge deal but at 8pm who can really be bothered. I know, I know first world problems of having too much food and needing to prepare it.

Excitingly there are new t-shirts in the works “sweet enough already” I love the early designs already! They will be available to order in a month or so.

If you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

Exercise experimentation and sugar free struggle.

I found out at a patient meeting Charlotte and I went to last week (I’ll post about it properly tomorrow when I have time) that her low muscle tone is most likely part of her PTEN disorder (Cowden Syndrome). Now I’ve always struggled to put muscle on too but not to the same degree as Charlotte till perimenopause. Which puts us at a similar place.

My coach Hesus and I are going to experiment with ways to build strength in me (a naturally non muscular) person and then translate that to Charlotte as she gets well enough to start weight bearing exercise.

Weight bearing exercise is extremely important for her, not just because of her hyperflexibility and lack of strength. She had thyroid cancer which meant the removal of her thyroid, it also means she is kept on a higher dose of thyroxine in order to keep her risk of thyroid cells regrowth and subsequent cancer low. This carries with it a big risk of osteoporosis. Exercise will be vital then for her bone health.

She also along with chronic fatigue syndrome has POTs (postural orthostatic tachycardia syndrome) which is greatly helped be exercise.

Today was my first day of this new program. I’m excited to be starting something that might help her.

I did however find it hard. It’s tough to do things we aren’t good at, there’s a certain amount of mental struggle. But I believe it will be worth it.

My younger son was going to come to join in but couldn’t make it. He did come home for dinner though and wow he’s looking so well. His skin is amazing. I can’t wait to see how well he looks a few weeks further down the line.

Speaking of dinner now here’s my struggle. Calories. On training days to gain strength I should eat at least 2000, sounds simple. Sugar free it’s actually not. 2000 calories of whole foods is actually a heck of a lot of food. I’ve hit the calories but not quite enough carbs and honestly I couldn’t eat any more if you paid me!!!

This evening Jasper and I went for a wood walk, it’s a few minutes drive from our house and lovely and cool on a hot day like this. Plus it’s very pretty.

If you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

What is Cowden Syndrome?

Put simply Cowden Syndrome is one of a number of tumor related disorders linked to the PTEN gene. They all fall under the the term Pten Harmatoma Tumor Syndrome, the PTEN gene is one of a number of tumor suppressor genes. They are as important as they sound, our bodies are remarkably clever and have both on switches and off switches. Our cells need to know when to grow, when to heal but also they need to know when to stop. An on switch and an off switch. With Pten disorders the off switch doesn’t work properly, this means benign and/or cancerous tumours can grow at any point. Don’t let the word benign fool you either, simply because a tumor isn’t cancerous does not mean it is harmless. A “benign” tumor in the brain can be fatal “benign” tumors clustered around nerves can cause extreme pain at the worst the loss of a limb. Even the good side of Cowden Syndrome is fairly obnoxious.

The general risks are shown below.

My daughter has Cowden Syndrome, it caused her to have thyroid cancer at 10 and have her thyroid totally removed. She, after the cancer never fully recovered and was later diagnosed with chronic fatigue syndrome and postural orthstatic tacychardia syndrome. She has also developed crushing anxiety and OCD as a result of all that happened to her. My middle child, the brother closest in age to her started to take drugs as a way of coping with the upset of his sister having cancer. I had no idea at the time. He now is dealing with substance dependency issue. Over a few years our family has been to hell and back all due to a faulty gene.

My daughter spends an inordinate amount of time in hospitals having checks and making sure there are no issues. She had 5 biopsies taken from 2 breast lumps just 4 days ago. I find it hard to put into words how difficult it is to see your 14 year old having breast biopsies. But this is her reality. I am just so grateful we have the NHS so any issue can be looked at.

My hope is that eventually a cure will be found, that one day kids like my daughter won’t have the near certainty that one day they will have cancer. That they won’t know from age 10 before they even had breasts that they will need a double mastectomy in order to keep them safe. Before she had even reached puberty we knew this. It was a horrendous revelation.

This is why I am fundraising, last year I undertook a year of 260 workouts, this year it’s a year of giving up 2 substances linked to cancer in the genetically normal population (it needs to be noted that very little can reduce the risk in those with gene defects). 

Any money I raise during the second year of fundraising will go here :-

Does sugar cause or feed cancer?

As those of you who have been following know, the aim and point of this sugar free and booze free year is to raise money for and awareness of a rare cancer causing genetic disorder:- Cowden Syndrome. My daughter has it and it caused her to develop cancer at ten. The ripple effect on the family is still being felt particularly by one of her brothers who developed coping mechanisms that now are making him very unwell.

Last year I focused on exercise, this year the focus is on giving up. Specifically giving up two common substances that can increase in their own way the risk of cancer. Alcohol and sugar. Today’s post is about sugar.

I did a quick calculation last night and my average total daily sugars for the last 3 weeks have been 52g per day. Before this I was hitting 65 to 70 a day so a not insignificant drop.

Of course all of the sugar I’m now getting is part of a fruit, vegetable or other whole food rather than being removed and granulated.

What’s shocking to think is that one single can of coke contains 35g just one.

A can of monster energy contains 55g that’s the total amount of sugar I’ve been getting every day in one single drink.

Now I do not believe that sugar either directly causes cancer or feeds cancer specifically. Glucose however feeds every cell in the body and fast dividing cells demand the most energy. Hence the belief that “sugar feeds cancer” and a sugar free diet starves it. Sadly not that simple.

But it is an irrefutable fact that a high sugar diet is a cause of diabetes, metabolic syndrome, non alcoholic fatty liver disease as well as playing a large part in obesity.

That is the link to cancer, a high sugar diet is a causative factor in diabetes and obesity. Looking at diabetes first, diabetes as well as being itself highly debilitating increases the risk of a number of cancers

“Studies have shown that diabetes carries an increased risk for a number of different forms of cancer.

Having cancer with diabetes can make achieving good diabetes control much more difficult but this can be relieved to some extent.
How is type 2 diabetes linked with cancer?

One theory for why a link may exist is that high levels of circulating insulin (known as hyperinsulinemia) can promote the growth of tumours.

In type 2 diabetes, insulin resistance commonly causes the body to produce more insulin than normal.

Another reason why a link may be present is where a harmful lifestyle may lead to obesity and therefore higher risks of both type 2 diabetes and cancer.
Cancer and type 2 diabetes

The risks of contracting the following cancers are shown to be doubled by the presence of type 2 diabetes:

Pancreatic cancer
Liver cancer
Endometrial cancer (also known as womb cancer)

A smaller increased risk, of 20% to 50% is seen for the following forms of cancer.

Colorectal cancer
Bladder cancer
Breast cancer
Blood cancers (non-Hodgkin’s lymphoma)

The one positive is that incidences of prostate cancer are actually lower for people with type 2 diabetes.”

And obesity, a high sugar diet is often a causative factor in obesity which is in turn is linked with increasing risks for numerous cancers.

“Does obesity cause cancer?

Yes, overweight and obesity is the second biggest preventable cause of cancer in the UK- more than 1 in 20 cancer cases are caused by excess weight

The risk is higher the more weight a person gains and the longer they are overweight for

The good news is small changes that are kept up over time can make a real difference”

Now of course there are other factors, there always are and you can do everything “right” and still have something awful happen. Let’s be honest you don’t need to tell my family that, my daughter developed cancer at 10 just because her genes are bollocksed. But the link to serious health issues and refined sugar, particularly in excess are clearly there and let’s be honest it’s hard to not have sugar in excess nowadays, especially growing up in a world where one energy drink contains twice the total recommended added sugars given by WHO guidelines.

“WHO calls on countries to reduce sugars intake among adults and children

Press release

4 March 2015 ¦ Geneva – A new WHO guideline recommends adults and children reduce their daily intake of free sugars to less than 10% of their total energy intake. A further reduction to below 5% or roughly 25 grams (6 teaspoons) per day would provide additional health benefits.”

Full details on recommendations below.

Without sounding evangelical, 3 weeks in and in the middle of a really traumatic time in my life I’m living without added sugars and my total sugars are a respectable level even with lots of fruit. It’s not actually as difficult as it’s made out to be, pretty much involves a little more cooking and carrying nuts!

We particularly need to stop our kids thinking that growing up saturated in sugar is in anyway normal.