Self fulfilment, one wedding, a birthday party, bedroom redecorate, possible Phd/Mphill and an upcoming hysterectomy.

It’s been a week or so, mainly because I’ve been crazy busy and the chance to sit down and catch up didn’t happen. Then it seems more daunting how to begin and where to channel my thoughts. As you know I had been feeling rather down, I got caught in the trap of where my life “should” be of course which means by societal standards. Which is usually a crock of shit. But it involves ticking various boxes, get a spouse, have kids, own a house, have a car, decent career, get a promotion, better car, live through your kids, even better car, fancy holiday. It never ends, it is a fools game, I realise this but sometimes still get sucked in, still feel my worth is not as much because as a carer I am not constantly ticking new boxes.

Any way I have a technique when I get in a fug, I tend to withdraw for a while and read, I focus on inspirational stories. People who have overcome obstacles, this could health wise or most recently abuse, poverty and many other set backs as was the case for David Goggins.

He is in his own words “a crazy motherfucker” not everything in his book resonated with me, but two things that really did were his ability to just keep picking himself up and his focus on self fulfilment. When did self fulfilment stop being important? Living a life to be personally proud of, which very rarely means having the best car because we all deep down know that while shiny things are awesome they don’t fill that deep well of satisfaction that doing something you personally find fulfilling does.

My focus from now on will be just that, on the matters that fill that deep well of longing for actual meaning, teaching Charlotte, spending time with family, seeing friends and it gave me the impetuous to start putting together a research degree proposal. There is a university that is showing interest, I will let you know more as and if there is more to know.

Tricky bit recently, I went to a wonderful 50th birthday party and a beautiful wedding, both I went to sober and sugar free. I have to admit that at the buffet I picked the things that I was fairly certain were sugar free and didn’t grill the bride on the matter. Would have seemed a little dickheadish really. But both occasions nothing but sparkling water passed my lips.

I did have a really tricky few days a week ago where literally all I wanted was to eat chocolate. I wanted nothing more than to dive head first into a family pack of minstrels and devour the lot. I didn’t but it was actually genuinely hard, which I know sounds bizarre but it was.

Onto the hysterectomy, I have after many years of bleeding heavily, painfully and sometimes for half a month had a hysterectomy arranged. My farewell womb date is 4th of October. I am seeing this as a positive step, I am already perimenopausal I really don’t need another five to ten years of heavy bleeding. Of course it’s not to be taken lightly, it is a major op but the consultant seems great, I was in hospital yesterday for biopsies on the endometrial layer which went well. I’m a little “stoned” feeling today and have a sore fanny but other than that all is good.

Which is why I have spent the past few weeks furiously re-decorating my bedroom, it was previously pretty bleak and if I am to spend a few weeks needing rest breaks the environment matters. Anyway thats us all caught up. I’ll post the last two weeks natural sugars tomorrow.

Better-ish

I’m feeling somewhat better today, Generally I actually love my life. There are a huge amount of positives, I adore where we live, I have a very close relationship with my kids because life have necessitated I’m around most of the time and although far from rich I never have to worry about food on the table, or a roof over our heads.

There are times however where I have to work at my mental health, I had to when Charlotte was first diagnosed with cancer and Cowden Syndrome and every time she has a scare. I’m going to have to now coming off the back of my younger sons very serious mental health struggles. In all honesty there were points where I found his difficulties and resultant ways of coping harder than Charlotte’s cancer. With cancer it’s terrifying but there is a very set plan of action and very specific planned outcomes of each stage. The professionals speak in terms of action and reaction and hoped outcomes. With mental health it seems that getting help in the first place is a nightmare and then it’s a case of throw things at a metaphorical wall and hope things stick. For two years in my sons case nothing did. Now he seems to have started to find his way out of the mire. I’m incredibly proud of him for that. Depression is a serious illness and like cancer takes lives. I think people often forget that. He’s doing amazingly to get through it.

Anyway so that leaves me with own brain a touch fried, in the past 3 years there have been more than one moment where I thought I’d lose my daughter to cancer or my son to depression, or lose our relationship.

In a nutshell I need to work on my own mental health, I need to focus in not out. The first step to this is to step away from social media. It doesn’t help, we all know that essentially it’s a highlight reel but even within that is the reality that most people have had an easier life than ours. Not all, I know some amazing strong people who have actually had it worse, but on the whole most families don’t have to deal with childhood cancer, or a youngster life threateningly depressed. Thank heavens they don’t I wouldn’t want them to, but equally I don’t always want reminded how much of a struggle our life has been in comparison and continues to be. My husband and I have often joked that the only break we get is a bone. It’s funny because it’s true. Dark humor for the win!

So I’ve a installed a block app on phone that allows access to Facebook and Instagram only once a day, that way I can check for notices by my gym, share work posts and then step away. Only my daughter has the pin to unlock the block app. If I miss that time period either I wait till the next day or have to load the actual laptop. Who can be bothered doing that?

This means all those spare moments on the loo or in waiting rooms will be filled with reading. I’ve taken this approach in the past and found it highly effective and beneficial.

I’m going to journal again,this is something I’ve also used in the past as a tool to focus on the positive and also found highly useful.

Most importantly I’m going to make time to see friends, this has always been the most helpful to me. To work on those real life connections. As much as I back away like a wounded animal when I hurt I need people. We all do.

Finally I’m going to accept that it’s ok to struggle, we’ve been through a hell of a lot in the past few years and my role has been to hold everything together and everyone up. That takes its toll on a person. Throw in perimenopause and crazy irratic cycles even with hrt and it’s a miracle I can hold a thought. Can I hold a thought? Not sure…what was I saying?

I’ve started this as my bathroom book it’s very funny.

Oh and on a totally different note I keep having “omg I had a glass of wine by accident or popped a piece of chocolate in my mouth, I’ve failed me challenge” dreams. Ugh Catholic guilt has clearly found a way to attach itself to this year!

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

If you’d like to follow me on Facebook that would here:-

https://www.facebook.com/cure4Cowdens

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 ♥️

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!

Day 18 – beach yoga, coffee and thinking about birthday cake.

I went to a beach yoga class which turned out to be a bootcamp and although I’m sure it was perfect as far as bootcamps go I hate group exercise generally. I know you’re thinking “why go to a yoga class then?” well because to me yoga is different, you’re doing your own practice around other people. It’s a hanging out but seperate vibe. Group exercise is all that “all in it together” mostly humiliating myself being crap at running kinda stuff. Also because I was expecting yoga I turned up in my vans and ended up having to go barefoot or ruin vans and think I broke my toe on something. Still it was beautiful scenery.

No my little toe isn’t normally this fat

I’ll definitely go back if it’s good weather next week and will be yoga but if it’s overcast and likely to be “bootcamp” I’ll just practice at home I think 😂

On the positives for today I had some really lovely support from a couple of old friends, one I met for coffee and the other via the phone. But I felt that very special thing where you genuinely believe someone is there for you. Which is lovely.

Things aren’t any better with my son, in fact I’d say worse. I’m hoping he’ll get the help he needs. Or should I say will take the help he’s being offered. We met today for a chat with a counsellor, it was so awful I think it will be many weeks before I feel comfortable even sitting in a room together again.

Food wise I forgot to photograph today but it was a fairly bland just get food sorted day.

Breakfast

Oats, apple, dates

Lunch

Corn cakes, butter, cheese

Dinner

Falafels, salad, grapes, natto,

Snacks

Dark chocolate

Total sugars – virtually all from 30g of dates this morning

It’s coming up to my birthday and I’m pondering what to do about birthday cake, shall I allow rice syrup as some of the “sugar free” gurus do because it’s glucose and the evil bit is apparently fructose. Or should I make a whole load of raw cakes which would probably all basically taste like banana or date or banana, date and avocado. Any thoughts?