Day 9 – Father’s day pie, struggling with life stuff. Charlotte and POTs

Father’s Day, which 2/3 of our children basically forgot. The one with a job hastily threw money at the problem… literally. The one without went for the time old classic “it’s lost in the post” oh his great great great great grandfather would be proud. Apparently the old ones are the good uns including with excuses. He then turned it round to he would be able to prove this but he couldn’t because evil evil mam had confiscated his phone and he only has access to that email from his phone. Not from a computer. For reasons. Of course. The girl had bought father’s Day stuff probably the day after last year’s father’s Day just in case. She’s going to be one of those folk who finish Xmas shopping in April and wrapping by May.

It’s looking likely that Charlotte throwing up, violently, All day was in fact due to Postural Orthostatic Tachycardia Syndrome. A quick read on the webs and it seems this indeed can be a thing with POTs. We need to see someone about this as she was in a real state. Which left me 80% worried about her and 20% feeling guilty as I had social out out plans that I’d wanted to keep and couldn’t. One of the tough things about being a carer is feeling guilty if you ever feel disappointed. Of course the sick person had it worse and that’s where the guilt comes from but it’s tough not being able to make plans and stick to them. People who haven’t been in the situation or one similar simply don’t understand, they think you’re just unreliable, flaky or making excuses. After a while a lot of people just stop inviting you. Which sucks. But it’s part of living with a chronic illness or caring for someone with a chronic illness. I still wouldn’t change my girl for the world.

Food in words and pictures

Breakfast

Berries, goat yoghurt cacao nibs

Lunch

Shepherd pie – homemade with turkey mince, carrot peas, chicken stock, potatoes, sweet potatoes

Dinner

Home made popcorn with salt, cocoa, made with cocoa powder and unsweetened almond milk

Total sugar

Today’s exercise

A dog walk into Alnwick centre around it and back home. Fun fact where we live has a large castle Alnwick castle and the town use to reside within a wall. The street either is named Bondgate Within and Bondgate Without.

This is the old gate

A little thing on the way home made me happy, these lovely yellow flowers.

Then it was a yoga plus CrossFit session

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 7 – 1 week down, 1 finished tattoo, 1 wet run and stock cube stress

Morning

Well it’s safe to say my digestive tract has noticed the extra fibre. I won’t go into too much detail but don’t want to be too far from a toilet at the mo. I’m sure that will settle down.

Today is an exciting one, I’m having the tattoo of the Goddess Isis on my right forearm finished off. First I need to run and get some uni work done. Oh please let it be dry on the beach, I’m sick of rainy walks and runs this week, fairly sure Jasper dog feels the same especially after yesterday’s walk where his belly willy spent a significant amount of time in cold muddy water. He’s really not keen on his silly belly willy being submerged, he does this weird arch back to try and pull it out of water which is hilarious.

Later today

Well it’s safe to we weren’t lucky as far as avoiding the rain goes. In fact dog and I were drenched. My coach Hesus wants me to keep my heart rate down as I extend my run time. I’m rubbish at pacing so at the moment I’m doing 2 mins run 45 sec walk to drop my heart back down. Seems to be working ok. Although wet and windy it was still an enjoyable 5 miles up and down the beach. I tried to get a cute photo of me and dog at the end of the run, you know like other people do. I failed entirely so here’s one of me looking wet and drunk (not actually drunk of course, red eyed from the rain) holding an unhappy dog in the rain.

Suprisingly though my recover and heart rate generally seem to have improved vo2 max wise and according to Garmin my fit age is 26 well as I approach my 46 birthday in a few weeks time I’m happy with that!

Later, later today my Isis tattoo is finished and I absolutely love her

It’s also just such a cool little shop

https://m.facebook.com/elementaltattoopiercing

Today’s food in pictures and words:-

Breakfast

Squished avocado with a bit of chilli and paprika on Nairn’s crackers.

Lunch

Roasted chickpeas, quinoa cooked in various spices, salad with apple, cashew nuts and lemon with olive oil dressing.

Dinner

Stuffed mushrooms (adapted from the Deliciously Ella original cookbook). I add spinach leaves and passatta. (Slightly burned today! Oops)

With grated and slowly stir fried veg, kinda a veggie bubble n squeek or cauliflower rice with other stuff if you’re a hipster.

Snacks

Salted popcorn, cocoa with unsweetened almond milk and chilli powder.

100% dark chocolate

I had a really argghh moment when I wanted to use a stock cube and couldn’t. I just wanted to make stock dammit. I need to find some sugar free stock. Then another when my husband brought home jelly beans from working away, I soooo wanted a jelly bean.

He did bring me back some Mandela tea though which is an interesting concept. Can you imagine a Margaret Thatcher tea? Would have to be a very traditional strong with milk. No sweetness allowed, or untraditional milks

Total sugars etc

Day 6- dog walk, CrossFit and struggling to eat enough

I slept for 11 hours last night. I think I needed it too. I didn’t really sleep the night before I rarely do the night before Charlotte seeing the oncologist and there are other stresses going on that I can’t talk about here. But boy did I sleep last night! Partly helped by it being the time of year I need to take antihistamines which always make me a little sleepy. Poor Jasper dog though, it was a clear 12 hours since the last time he’d been let out for the loo. I’m amazed he didn’t shoot straight out of the door!

I had a little extra time this morning so made museli, I found earlier in the week that toasting half of the oats makes a huge difference texture wise, sweetness came from finely chopped dates and half an apple each. I love food which isn’t going to change across this year so I’m going to have to put a little extra effort into making sure it’s tasty.

Speaking of which I bought a new cookbook to puruse, The How Not to Die Cookbook. I am not sure I am entirely on board with the full on message of the original book but I certainly know with these kind of books in going to find some decent veg based sugar free meals. I’m quite excited to look at it later.

One of the issues I’m having at the moment is getting enough calories in, especially on training days. I suspect I’ll be eating a whole lot of avocados and peanut butter this year!

Costa for a coffee with a friend was so filled with lovely smells and tempting things. I am going to miss hot chocolate very much this year but a cappuccino with cinnamon was still lovely.

Today’s food in pictures and words

Breakfast

Home made museli, oats, dates, apple, blueberries and unsweetened almond milk.

Lunch

Curried Cauliflower soup

Salmon, salad leaves and a kiwi.

Dinner

2 boiled eggs, salad, pecans, blackberries.

Snacks

Avocado mousse made with an avocado, raspberries and coconut milk.

Skinny cappuccino at Costa with cinnamon on the top rather than chocolate

Today’s exercise

First a dog walk with Jasper, a fairly slow amble along the old Alnwick to Alnmouth railway tracks which are gradually being restored. It’s a lovely walk especially on a rainy day when quiet. Jasper wasn’t too impressed by puddles up to his arm pits though! My Star Lord jacket is awesome at keeping me dry though. Not sure how someone managed to go home without their underwear though!!

Later in the afternoon I practiced Ashtanga standing series to warm up for CrossFit then it was as below. Certainly a lot to get through but it felt really, really good today. You know when you have one of those workouts that just feel amazing. Pretty rare at times but this was one of them.

Don’t forget why I’m doing this and sponsor me please

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

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