Christmas, hospital and Charlotte’s new hair.

Christmas was lovely and I took a few days off the sugar free. In fact I took 5 off, not because I was stuffing my face with quality street on an hourly basis but I had a few meals out and social engagements and really don’t want to that killjoy demanding sugar free this and that. I’m happy to pay the penalty in these circumstances and will be popping £100 into the charity pot. Generally I’m struggling with this sugar free challenge, it just adds such an extra element of hassle into daily life which is starting to wear me down. I will stick with it till June though, it’s not that long till the year is out. I’ve said it before but last year’s CrossFit challenge was so much easier.

Charlotte update – she’s doing ok, chronic fatigue is kicking her arse as is postural orthostatic tachycardia syndrome. It’s really difficult for her. She also has an operation coming up in March which she isn’t exactly over the moon about. She has a few tumors which the medical people are certain are benign but they need to come out, just to safe and because them being there could make it more tricky to spot something serious. We were at hospital yesterday arranging this.

Another day another waiting room

She has had a few surgeries across her life and always has a dreadful time with the cannula and with throwing up after. Oh my is she sick afterwards, violently, for hours and they’ve tried everything to prevent/stop it. Nothing as yet has worked. So she’s not a happy bunny and left hospital quite stressed. We did the sensible and mature thing and went home to shave most of her hair off and bleach what is left.

Punk rock girl!
She’s so cool that kid

Other than that I don’t think there’s much news, my eldest is moving into a place of his own which is very exciting, we adopted a cat we literally found in our bins, half starved poor thing. Seb moving out and the car moving in aren’t connected though swapping kids for cats could be a plan.

Bertie the bin cat

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Healing and sugar free

We are still waiting for appointments for my daughter, in the meantime it’s life as normal and trying to not worry.

Today’s sugar free year observation is on healing, as in the physical kind. I’ve never had issues with skin healing in fact I’d say I’d always been a pretty good healer. Now my bodies ability to repair tissue is excellent, my hysterectomy incisions knitted over in a matter of weeks, I had no bruising in fact I bruise very little these days. Then there’s the tattoo I had done a week ago, it’s my 6th and 4th big one so I’m fairly use to the tattoo healing game. This one has healed over in 8 days, all scabs fallen off all flakiness gone. There’s still a little itching and se raised areas but to look at you wouldn’t think it was quite so new.

What has caused this improvement in healing I can’t say, it could be the lack of sugar though it warrants saying I never had a typical western diet of junk food so never had a high sugar intake. Plus although my “added” sugar intake is zero my actual sugar intake (from fruit and other whole food sources) is the same as it ever was.

Perhaps that’s the reason, when I cut out all the extras I replaced them with fruit, fresh peas and other fruit and vegetables. My fruit and vegetables intake is higher than it’s ever been at around 8 to 10 portions a day. Whatever the cause is it’s certainly a happy side effect.

Waiting for consultants- Cowden Syndrome sucks

Sorry for the long delay in blogging. I’m not feeling especially chatty at the moment, my daughter has some breast issues which I can’t discuss in detail but could range from the very serious to the not at all serious. She also had a bleed in her retina which again could range from serious to not serious. We are waiting for appointments with consultants to try and establish what is going on. I hate the waiting, I hate Cowden Syndrome, I hate that we get to a period where things seem calm and then she has a whole load of new things to worry about. I hate the fear. I hate that she and I are both looking forward to seeing the breast surgeon as we can at least then have the conversation about how old she needs to be to have a double mastectomy. I hate that at 15 she’s in a position where she’s looking forward to such a major surgery. I hate that once again we are heading into Christmas worried sick. This is the reality of Cowden Syndrome.

I’m still persevering with the challenge aside from a cheat day at the cinema that my son offered to pay the penalty for. It’s important to me keep fundraising, it’s important to me to think that one day there will be a cure or treatment and she can just live her life, one not without worry but with normal worries.

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My hysterectomy and oorphectomy experience – part 1

Day 1 – operation day, it all went smoothly apart from not being able to find veins to put the cannula in. Ouch on both hands. The op itself was vaginal but laproscopically assisted. I woke up confused, sore and hungry. I had pre-ordered food that sounded sugar free. That’s the best I can do in hospital. I refused to use the bedpan and managed to get to the loo when I wanted to pee. I wanted to be on my feet as soon as possible. The staff were lovely apart from one of the night nurses who was well very classic “why are you bothering me” night nursey.

Day 2 – busting out of here..”hi doctor I’m fine yup I’ve peed, all is good, bye bye now” well it went a little like that with the addition of them ultrasounding my bladder to make sure I could actually pee. Arrived home and went for a very very very slow walk, rested then walked again. I had been given some oral morphine for the first couple of days. I just took it at bed time. The rest of the day I alternated ibuprofen and paracetamol. Oh I also added a new rule to my list of rules for this fundraiser medicine with sugar in is allowed. No way on god’s earth I was going without painkillers on the first night! Food wise it’s lots of veggies and good fats for skin repair and inflammation reduction. I’ve always believed that diet is do important for pretty much everything. I don’t assign magical properties but it definitely forms a building block of health.

Day 3 – I pooped and it didn’t hurt and my insides didn’t fall out! Result. The air in my chest and wind generally is bothering me. The trapped wind is making my abdomen incredibly uncomfortable as it’s around where my uterus was removed. The feeling of air in my chest cavity is just bizarre. Did you know they inflate you with laproscopic surgery so they can see inside? Very clever but after feels really weird.

Day 4 – Generally feeling well, I’m walking daily a couple of times a day making sure I’m at a pace that doesn’t hurt. My brain is not working on full power and my short memory is shot.

Day 5 – Still feeling ok and mood wise very stable and but hot flushes are hitting with a fury. I’m now just taking paracetamol and ibuprofen at bedtime. As I’m upping my walking I want to feel connected with any pain so I know when to stop. I am still of course tired at various points in the day. Imy the wonderful woman covering my classes popped by with a card from my students which was super sweet.

Day 6 – walking is going well, I’m covering 3 to 4 miles a day at the moment. I’m sticking with routes that loop back close to my house in case I get tired and need to go home asap.

Day 7 – It’s my daughter’s birthday tomorrow so I need to bake cakes, this along with my little walks left me very tired. An amazing friend however dropped by with food so after I’d finished the cakes I didn’t have to cook such a huge help and relief. I’m astounding how little I’ve bruised, my surgeon must have been bloody good at his job! Cake wise I went for the same I made for my birthday, sugar free and raw food goodness

Day 8 – Tired after birthday prep but Charlotte wants to have a quiet hanging out day thank god! She also wants a take away for her birthday food, even better! This is exciting for Charlotte because she’s never had take away food. Um ever. I’ve always home cooked partly because I want to feed them all healthily and partly because I think take out is very expensive for a family of 5 compared to what I can cook in a short time. Tonight I’m going for it though. Again luckily because of my amazing friend Ali I didn’t have to worry about what I was having. I had the best curry and rice possible in the fridge. Oh and did I mention she made it all sugar free. I started on estrogen cream this morning. The consultant said I could once back to “normal” activity. I’m walking around 4 to 5 miles a day now so I’ll count that as normal.

Day – 9 hot flushes still coming thick and fast and I’m waking up waaaay too early. This is bothering me. More birthday celebrations, ate too much felt great for it though. The trapped wind and abdominal air is pretty much gone and my stomach is back to nearly flat.

Day -10 Still hot and bothered I’m genuinely wondering if this bio I’d stuff is worth the bother or if I should just take the pills from the doctor. I woke up at 5.30 after not enough sleep the tiredness ran through the day. Right now as I sit here all I want to do is go to sleep. On the bright side I am back to walking at a reasonable pace.

I stopped the bio id cream and took an elleste pill instead. I also took behind the counter antihistamine based sleeping pills. Of course this is a very short term solution.

I had a look at Garmin and apparently walked 25 miles in the last 7 days and did 75,000 steps. Mind you my way of dealing with most life stressors is to go for a walk and in the past year a run. I’ll be leaving the running for a while. Not sure jiggling my insides up and down right now would be a great idea.

I have stuck with the sugar free the medication being the exception, and of course hospital food not being an entirely known quantity. Even though right now I’d kill for a bar of dairy milk. I haven’t though thoroughly logged in my fitness Pal. There were some days it was just too much mentally.

Disclaimer- I am not suggesting in any way that anyone follows what I have been doing. This is simply my experience. Before surgery I was exercising 6 times a week, a combination of gym, running and yoga. For me getting back on my feet and moving was the natural thing to do. Each individual needs to listen to their consultant and their body. My consultant cleared me for walking immediately as much as I liked. Mind I’m not sure he entirely understood how much I like walking!!

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Natural sugars for the past month

I haven’t been logging these weekly on here as I was at one point but I have been uploading it all into my fitness Pal. So here’s a whole month in one go!!!

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.