CrossFit, weekend treats and family time.

My elder son was in CrossFit contest today which we went down to watch for a couple of hours. My younger son came too to support him which was actually really nice. I haven’t spent time with him in a long while and it was pleasant to remember that actually we do get along and have many things in common, sense of humour included. He’s looking really well too which was lovely to see.

The weather wasn’t kind to those competing and seemed to flip from raining to sun and back again. So it was either too hot or drenched through. You can see how wet it is by the reflections! We weren’t close enough and my phone camera isn’t good enough to get decent photos of my son as he was on the far side, but he’s the blue t-shirt on the way over the fence.

This is a picture of all the competitors from our gym together looking rather damp. My elder son is the slightly taller one with his shirt off.

After that it was back to more mundane weekend stuff, washing dog walk etc. I did take Jasper on one of his favourite long dog walks which involves passing sheep, a wood and a castle. Along the way we also saw a family of ducks and a pair of beautiful dragon flies

Tonight of course is Saturday evening and I must admit I do like something enjoyable with a film. This week it was cherry and banana “ice cream” (basically blended together) and plain popcorn. Honestly it was amazing fake ice cream especially with extra cinamon in.

My total sugars today were the highest they’ve been since I started this challenge. I’ve had such a headache today and just wanted fruit. As the point of this year isn’t to avoid sugar but refined sugar why the heck not. I’ll be doing a weeks total sugars tomorrow same as last week.

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).

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

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

https://ptenfoundation.org

Day 24 – foot turning more purple!

This morning I taught Pilates, as well as homeschooling my daughter due to her health problems and studying for a Master’s part time myself I teach yoga and Pilates. I teach in some genuinely beautiful places and the students are such wonderful people. It’s honestly always a joy to go to work even when life is being sticky. It also reminds me that without exercise and mindfulness I’d probably not be coping at all. It is and has been for many years my sanctuary.

Exercise is rather tricky as my foot is gradually bruising more as breaks often do and rather sore after yesterday’s accidental walk! But I can still do a great deal of yoga and my coach is fabulous at planning around any issue. This is what I did today.

After cooking for my daughter, I did a little pre-reading for starting to teach Charlotte physics tomorrow. I’m not looking forward to that! Biology I’m very comfortable with, Chemistry moderately but Physics will be interesting! Thankfully her dad is a mathematician so any equations are his forte.

I’ve had a couple of people mention how well I look, which as I said in previous posts I’m not feeling any different but that could be due to stress. So perhaps the change in sugar intake and having a zero booze intake is showing on the outside.

Today’s food (only one picture! Sorry still not in the habit)

Breakfast

Berries, goat yoghurt, seeds

Lunch

Loads of veg, olive oil, roasted pine nuts

Dinner

Veg burger, salad leaves, olives, hummus and olive oil

Snacks

Dark chocolate and a banana

Total sugars

Day 23 – More bike erg and an accidental walk resulting in extreme hunger!

I knew I was going to spend most of the morning driving my sons around. To make sure I had time for exercise I went to the gym for 8.30 to get half an hour on the bike erg in. Even if I’m limited in what I can do at the gym with the broken toes it always clears my head.

I was right about the driving too, by the time I’d picked the younger one up from Blyth and delivered him to Alnwick then driven the older one to work and myself and daughter home I’d easily covered 80 miles. Add in a diversion to Craster and I’m sure it was closer to 100. Not bad with two broken toes. Still not as far a my husband who is driving younger son to Peterborough to stay with his Auntie for a week. That’s a rather long way there and back in one day!

About the diversion to Craster, my daughter decided she hadn’t been to Dunstanburgh castle for a while. I assumed wrongly this meant she’d been, well ever. Wrong. Now at this point I’d been to the gym and driven around 80 miles, I wanted lunch. “Let’s have lunch at a pub” I say, “no” says Charlotte “we’ll go to a cafe at the castle”. Which turned out to be a mile and half from the car park. Normally, not a problem, with broken toes I was slow. Really slow. Anyway we finally get there. No cafe, just a shop, filled with chocolate and sweets. Wonderful. My lunch consisted of a packet of crisps and a bottle of water, until I arrived home much later. Thankfully I didn’t eat my daughter or the dog. It did after a few easy days remind me how tricky being sugar free can actually be. It’s not all banana ice cream and cinamon! Gorgeous views though.

Today’s food in words and pictures (yes I remembered to take photos today!)

Breakfast

Oats, cinnamon, small apple a few grapes

Lunch

Crisps

Later lunch

Roasted cauliflower slices, fine green beans, feta, olive oil and black pepper.

Dinner

Strawberries, apple, raspberries, satsuma, kiwi and cacao nibs in a fruit salad with creme Fraiche.

Snacks

Dark chocolate

Total sugars

Days 19, 20 & 21 – hospital stuff

Today’s day 21 which marks the end of the first 3 weeks of this challenge. As I said before I’m not sure if I’m feeling any actual benefit with all the stress going on, but then that’s not the point of it anyway. The point is to raise awareness of Cowden Syndrome and money towards research.

This morning Charlotte had an appointment at the breast clinic, she with Cowden Syndrome has an 85% lifetime risk of breast cancer, with the risk getting higher as she gets older. Her oncologist found a couple of new lumps in her breast and sent her to be checked. It is also quite common for teenagers with Cowden Syndrome to have fibroids in their breasts. So it’s most likely nothing serious but I will worry like crazy until we get results back. I always do. My daughter was incredibly brave as always, by the time they had taken 5 core biopsies from 2 lumps I was shaking inside and fighting to stop it from showing on the outside.

I hate that she has to go through this. I had one of those moments today where I realised how use we have become to the abnormal. I said to the nurses attending to my daughter that she and I were looking forward to when she was old enough to have a double mastectomy. She looked horrified, she looked like she could cry. But it’s true. To her her breasts are just a source of worry.

My son has been found somewhere to live away from where we are. Everything I have read on addiction and breaking the cycle says the person has the best chance if they are away from the places and people they associate with their addiction. I hope it works. Of course he could go looking for a new dealer at his new location. If that’s the case there’s very little anyone can do. I wonder if any of this would have happened if my daughter hadn’t had cancer, or did this all start when I was up and down to hospitals.

I find the reality of him actually moving out heartbreaking, for all the difficulties my family has faced we have always been close. We’ve always had each other, now one of us will be missing.

Today has been one of those days where the knawing hole inside my chest feels like it’s becoming so big I will simply disappear inside it.

As it was a hospital day it was mostly eating out. I don’t actually find eating sugar free out of the house that desperately difficult. A snack at Costa was fruit, lunch at pret a protein box without the sauce and at the cinema black coffee and nuts. Eating out sugar free really is keep it simple and not have the dressing. Coffee wise either black or skip the chocolate in a cappuccino and have cinamon, it’s genuinely lovely.

My daughter and I had a pleasant spot in the day when we went to the new Everyman cinema in Newcastle which really is beautiful. Sofas and tables plus being allowed to take an actual ceramic cup and saucer into the cinema! Oh the civility

Total sugars today and the past few days as I hadn’t blogged since Tuesday

Finally a toe update, yup it’s broken which is seriously annoying especially as the gym is my sanity. I found some two sizes too big shoes in Primark for my swollen fat foot though that should allow me to use the bike erg which is something!