Oh my word I can’t be bothered.

The hardest thing about this challenge is having to make everything. Absofrickineverything. Because pretty much anything that comes in a packet has sugar in it. Just about every damn time. So there is no I’ll just grab whatever. No it’s “oh I need more carbs” right I’ll just bake a soda bread should be ready in an hour. Oh then I’ll wash up. Ugh I am knackered tonight and I just can’t muster the energy.

I’m sure it will do me all sorts of wonders health wise but truthfully I just want to raise money so I can do Charlotte all sorts of wonders health wise, with a treatment or a cure.

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!

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

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!