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

As always 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

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.

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

My hysterectomy and oorphectomy experience – part 2

Day 11 – Generally feeling good, I slept better last night. My abdomen is still tender but ok. I’m now working on walking upright again, with abdominal surgery there is of course a natural need to hunch a little for the first few days to protect the incisions. Now I’ve healed enough to want to work on posture and holding my core in while I walk. I’ve been doing pelvic floor exercises since day 3, now I’m adding in gentle core exercises such as bridge, single leg table top and double leg table top. I’m still wearing compression socks but have some fun ones now.

I have a very definite headache but I have a feeling it’s not connected to the hysterectomy and more likely connected to middle son who has been coughing his lungs up for the past few days and complaining of a sore throat. Without sounding too unsympathetic, boy the last thing I need right now is a cold. Coughing and sneezing would not be good!

My biggest concern right now is when the vaginal stitches dissolve, the consultant mentioned that there is 1 to 3 % risk that when they do a scab can fall off from the incision that causes serious bleeding. It’s around the 10 day mark the stitches come away so round about now! After our past few years of medical rubbish the small risk seems huge!

Day 12 – I found a large lump in my left breast last night, around 2cm that was a hell of a shock. Because we are with Bupa I’m seeing someone this afternoon. Back to the hospital it is then!

Day 12 – later that day, thankfully just a cyst a 3 cm one! The guy drained over 7 ml of ick from it. Ew.

Day 13 – Slightly tired today, but I was invited out for lunch at a friend’s house with a group of fabulous women. I feel very blessed to have some genuinely amazing women in my life. Having strong loving women in your life makes such a difference. The rest of the day was cooking, walking then resting.

Day 14 – I slept better than I have been for a while, I only woke up a couple of times to pee. I’m assuming the peeing a few times a night is a combination of pelvic floor damage and low estrogen. I woke up feeling sick though, I hope it’s just a thing and not that I’ve picked something up!

My abdomen outwardly continues to heal well and the incisions are slowly fading.

Day 15 – I started spotting a little, nothing dramatic and it is around the time that stitches would be dissolving and it can happen as part of that process. I’m watching and waiting, if it gets worse I’ll of course go to a doctor.

Day 16 – still spotting and my waswomb (the bit where my womb was but no longer is) is sore today. I think it’s part of the healing where nerves are waking up. I’m feeling tired generally and my joints are aching, I feel quite emotional today also, like I’m on the verge of tears for no reason. I’m not sure my hrt is quite right. Really not feeling enthusiasm for life today! I’m seeing the hrt specialist the week after next, hopefully he will be able to tweak things to get me back to feeling normal. My husband is away for work and I’m very much feeling the pressure of needing to be “normal” and keeping on top of things when really I’m very far from normal as yet.

Sugar and booze wise I’ve stuck with my commitment to this fundraiser even though god I would love to have an easy option right now food wise. Or an eclair. Like I really want an eclair so badly right now.

Cat is helping by trying to trip me on the stairs.

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

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