Cure 4 Cowden’s – logo & t-shirt design

My wonderful, talented friend Linda over in Portland who designed the logo for Cure 4 Cowdens last year has been busy working on a t-shirt design for this year. I absolutely adore it. What do you guys think?

The plan is to do the same as last year, take orders for size (possibly colour if it’s an option) then place a bulk order. Just need to find a place to make them!

All profits will go to the PTEN Foundation to aid in research towards a treatment or cure for Cowden Syndrome.

via Cure 4 Cowden’s – logo & t-shirt design

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.

https://www.justgiving.com/fundraising/sugarfreeyear

Trying to keep busy and holy hormone hell

So the past day or so I’ve been trying to keep busy in the midst of all this drama/trauma. It’s affecting my stress levels and blood pressure which I don’t want to start becoming a problem.

My hormones are also all over the place like ridiculously so. I’ve just had a 17 day cycle and the one before that was 22, before that 35 days. The past month I was either bleeding or building up to a bleed. Honestly I’m exhausted. The doctor is sending me for an ultrasound as there is a chance of cancer at my age and it’s always best to be on the safe side. They are also upping my hrt in a week’s time. I’m hoping that will help.

Tomorrow should be an exciting day as my daughter and I are traveling to Manchester to meet with a whole load of other PTEN gene disorder sufferers. I’ve been Facebook friends with a few for a while so it will be fab to meet them in person.

Sugar and booze wise I had a really tempting moment with the sugar just today. My husband has taken to having bags of chocolate around when he’s working, giant buttons that kind of thing. Normally I’d just dip my hand in and take one. In fact that’s such a subconscious pattern I almost did reach over!! But I didn’t. Still on the straight and narrow!

Fab sugar free find of the day has been a sugar free Tumeric Latte mix, it’s lush!

Day 8 – I slept through the night

Last night I slept through the night for the first time I can remember unmedicated (there have been short periods of time across Charlotte’s cancer journey where I’ve used sleeping pills) No shame about it either). Anyway I have in my mid 40s accepted waking usually a couple of times a night as part of middle age. Kind of have v just have been one of those rare blessed nights allowing me to snooze 10.30 to 6 undisturbed, or could even the relatively low level of refined sugar I was enjoying across the week have been causing an issue. I guess I’ll find out over the next few days, weeks and months.

I took Charlotte to The Mighty Dub fest, a VW festival that takes place in Alnwick. We walked there with Jasper the dog. She was so looking forward to it but within 20 mins and a quick whizz round in a waltzer she had a huge chronic fatigue flare up. I had to wrap her around me and haul her to the road where her dad could pick us up. Of course people thought my teenage daughter was drunk, some shock their heads others even tutted. Of course a teenager can’t be ill or disabled, they must be up to no good. When the truth is my daughter has chronic fatigue syndrome, postural orthostatic tachycardia syndrome and is autistic all of which are linked to her Cowden Syndrome.

Poor kid, she wanted to have a good day our and ended up broken. This is why I’m fundraising for research into Cowden Syndrome. I want a future for her and for kids like her. Without Cowden Syndrome she wouldn’t have had cancer and wouldn’t now how chronic fatigue syndrome or postural orthostatic tachycardia syndrome

Before we left I did buy a bowler hat though. I suspect I will wear it a lot!

I should be out socialising tonight but she is so poorly right now I couldn’t possibly leave her. It’s tough for both of us, I had plans tonight she had plans tomorrow neither will happen. Such is the way with chronic illnesses.

On a different point I had a couple of interesting finds that will allow me to add flavour to food. A vanilla paste and orange oil, both with neither sugar nor alcohol.

Todays food in pictures and words

Breakfast

Crackers with smoked salmon and cream cheese

Lunch

Fries at the festival followed by a quinoa salad with asparagus, boiled eggs and a date thingy.

Dinner

Parsnip and cauliflower soup with crackers and butter.

Snacks

Banana ice cream made with frozen bananas, frozen fruit and the vanilla pods I acquired..

A smidge of dark chocolate

I really, really wanted a gin tonight, I’m not a big drinker but 2 or 3 singles on a sat night especially when stressed (which I always am when she’s poorly) is lush.

Oh my god the ice cream is amazing. So simple too, 1.5 frozen bananas, 100g frozen berries a splash of almond milk and the vanilla paste (a smidge).

Of course it is quite high natural sugars wise so whether this is better for me than normal ice-cream I have yet to be convinced!

Total sugars

Day 5 – Why am I doing this challenge?

Today was a check up for my daughter, she’s now on 6 monthly oncology appointments and 3 years into remission. You would think that means she’s pretty much out of the woods but after her cancer diagnosis she tested positive for a PTEN gene disorder and along with other markers was diagnosed with Cowden Syndrome. Put in simple terms she has a gene defect in a tumor suppressor gene which means she is at high risk of both benign and cancerous tumors. The risks are quite harrowing:-

Lifetime Risk with PHTS (%)

Average Age at presentation

Breast 85 % – 40s

Thyroid 35 % – 30s-40s

Renal Cell 34 % – 50s

Endometrial 28 % – 40s-50s

Colon 9 %- 40s

Melanoma 6 %- 40s

My daughter was 10 when she developed thyroid cancer.

The check up went well, there is a new lump in her breast they want to look at but aren’t too concerned.

Last year I undertook a fundraising year of 260 CrossFit workouts. It was tremendous and the amount of support I received from friends and family was wonderful. I wanted to do a second one starting on the 3rd anniversary of her radiation treatment. Of course I couldn’t do the same thing again and what does and doesn’t contribute to all of our risks to cancer, so I chose one product that has been proven to have links to cancer (alcohol) and one that is often accused wrongly of being linked (sugar) – don’t get me wrong I know sugar is guilty of many, many things. But feeding cancer has no scientific base. I also figure to get people to sponsor me I have to suffer and of course being my daughters full time carer as cancer left her with Chronic Fatigue Syndrome and oostural Orthostatic Tachycardia syndrome I can’t really take on an away from home challenge.

Anyway so that’s us up to date with where I’m at. Back to today. The only difficult point was eating out but thank heavens there is a wonderful whole food vegan cafe in Newcastle (you don’t need to be vegan to eat plant foods)

https://m.facebook.com/Super-Natural-Cafe-788599297887313/

They were wonderful and I had a delicious but burger after checking ingredients with the guys.

What I ate today in pictures and words- I was better at the photos today!

Breakfast

Soaked oats, coconut milk, almond milk, apple, blueberries.

Lunch

Nut burger, roast potatoes, coleslaw, green leaves.

Dinner

Eggs, smoked salmon.

Snacks

Date bar, 100 % dark chocolate with orange oil

Total sugars and breakdown