Thank you ♥️

I’ve wanted to write this post for months, but honestly I struggle with opening up. I’ve become very adept at coping with adversity. A side effect of that is that at times I have a wall around me which is hard for others to break through and for me to break out of. Those who know me well know I’ll always say I’m “ok” even when I’m not and I’ll never ever, ever, ever, ever ask for help. Even when I need it. Heck I have a hard enough time even accepting help when it’s offered! Really I’m a difficult person to get to know properly.

When I started my first bout of fundraising not only was I difficult person to get to know but I was very damaged. I was exhausted emotionally and jaded by people and life. I found it almost impossible to connect with others, their day to day life had really genuine concerns but they were more regular ones. I had had 3 years of slowly being dragged through the process of finding lumps in my daughter’s neck and wanting medical reassurance, to biopsies, to her surgery, to finding out it was cancer. This was followed by the diagnosis of Cowden Syndrome which means this is the rest of her life, she will always need checks and operations. She will always be at risk of cancer. This was followed the next year by a diagnosis of chronic fatigue syndrome and postural orthostatic tachycardia syndrome. At each point when we were waiting to find out a diagnosis it was all consuming, at social events when I started to relax I’d loosen up and begin to talk about her cancer, or the next awful thing we were hoping it wouldn’t be (which it always was the horrible thing) and God bless the person I was talking to they would always get this look of “get…me…out…of…here” I made people uncomfortable. My life was the kind of experience at that time that parents live in fear of. Connecting became almost impossible. At the same time I had old friends of 20 or so years just vanish. I guess they found seeing a kid they’d known since a baby with all this happening was too much. I needed them though and the sense of abandonment was raw and painful.

All of this meant I’d essentially come to terms with the fact that it was me and my family. When I started the fundraising the first year being 260 workouts I’d slip into the gym during the quiet times and get it done. I hoped that people would sponsor me but I had no expectations.

I certainly didn’t see what actually happened coming. The amount of support I received was incredible. A wonderful woman ran a raffle at her business, people bought t-shirts and wore them to comps family and friends sponsored me, some brought in prizes for the raffle I ran at the end of the year, a gorgeous lady made an lovely hand crochet blanket to raffle. My son ran his first ever half marathon and it was up a Cheviot, one of our awesome coaches accompanied him (probably wise he might have gotten lost). My coach patiently programmed the workouts for me working around hospital appointments, exhaustion and general whining. Sometimes people would workout with me, before the sugar free year I had cake regularly left at the gym by a superb home baker and fabulous woman. I had people offer words of support and kindness, offers of coffee and hanging out and just being normal. These amazing people have become my friends and my life is so much better with them in it.

Thank you to each and every person who supported and continues to support me in any way big or small. Not only did we raise over three and a half thousand last year for the PTEN research Foundation in London but you healed my heart and restored my faith in people.

We still have ups and downs, my daughter has a great deal to face, her brother is fighting and doing very well at doing so mental health issues. Honestly at times I struggle with being a carer and homeschooling and the limitations it puts on both Charlotte and my life.

I know however that I have a lot of people who have my back.

Thank you ♥️

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

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.

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!