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

Spain! Plus a cheat day 😱

We arrived in Spain rather tired and bad tempered and ready to kill each other. It wasn’t the earliest start in the world at 4am but early enough if like some younger Kelly’s you forget to go to bed till 1am! The villa was not disappointing nor is the area, both are beautiful. In the villa we have 2 downstairs apartments and a 3 bed flat upstairs, a pool to ourselves, 2 different outdoor eating areas, 4 balcony areas, can I just live here please?

The grumpiness mainly settled by the next day Sean and I attempted to go for an early run didn’t quite manage it out of the villa fast enough so hit the promenade at around 11.00 yes folks me you friendly neighborhood pasty red head was running in Spain in the middle of the day. After 3 miles I felt rather wobbly and found a cafe. I figured Sean would find me eventually. The rest of the day was spent in the pool enjoying the Villa and exploring Calpe, the older part of town is particularly beautiful.

Monday

We decided to chill for the morning, no running but I swam for an hour then we explored Benidorm, I’ve never been on a package holiday but of course Benidorm is famous as a resort for the party life. It was huge fun visiting almost like a British seaside town but actually sunny! I must admit I’m glad we are in the quieter town of Calpe. Later on Monday while in the pool James managed to crack Sebastian in the face with a pool net, you know the kind that is used for fishing leaves out. The poor guy has a black eye so bad it looks like he’s wearing eye liner!

Tuesday

We spent most of it by the pool and at the beach, that is what we are here for after all the views of mountains continue to take my breath away, it’s the first time in a long while when I’ve been on a holiday where I don’t want to go home.

I even braved going out in a bikini for the first time, oh in at least 2 decades!!!

While here I’ve been trying to keep up with exercise, running 5k in the morning and swimming for an hour some time during the day. Right now I’m sitting in a cafe after finishing my run which somehow was my fastest ever 5k in ridiculous heat!!! I think the cafe at the end helped !!!

Wednesday – Valencia

It’s about 90 minutes drive from where we are so seemed well worth the effort. The city itself is stunning though driving past the bull ring was a reminder of cultural differences. We didn’t have a set agenda as ots tricky with Charlotte we don’t know how well she’ll cope. We had a fabulous lunch which of course I had no idea how to ask what was sugar free, gluten free was hard enough. I somewhat suspect that if I’d been asking for a gluten free sugar menu in an Italian restaurant in Spain they’d have thrown me out. I’ll pay £20 penalty into the fundraising, as I knew I was paying the penalty I had 2 glasses of wine, and cake. I wanted my money’s worth for a day off the challenge!!!

It’s an absolutely beautiful city and I wish we could have spent more time there.

We did have a chance to pop into a CrossFit box and pick up a t- shirt for Seb and I. It was on his must do list! There were such lovely people and have Seb a few tips on how to get double unders.

Thursday

A day spent in Calpe, a run in the morning a hike in the afternoon followed by a swim.

Friday

Spent recovering from overdoing it in the heat on Thursday!

Saturday

Home time!!! Jasper was pleased to see us!

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

Jealously

Sometimes times I get a little jealous, when I see kids reaching normal teen milestones or people achieving something I would like to. Back to school, prom, taking a great job or doing up the house. I don’t begrudge them in the slightest, heck in fact I’m pleased for them every single time. I just perhaps feel the walls around my choices around our lives a little more strongly that day.

When my children were young working part time worked well, it meant I could be the one who picked them up from school, I could attend every school event and my eldest needed a little more support due nuerodiversity and schools struggles with the nuerodiverse. I had always planned on moving into a more academic field once they were all at senior school level. I have plenty of qualifications ready to go. Charlotte of course just wants to be teen and do all the regular stuff that goes with it.

How does the saying go “Life is what happens while you are busy making other plans” J Lennon, and so it did. Anyone who reads this blog knows what happened next. My daughter developed cancer, followed by a diagnosis of Cowden Syndrome and later Chronic Fatigue Syndrome, Postural Orthstatic Syndrome, OCD and anxiety. She needs me, she needs me to there, to help her with homeschooling, to take her to appointments, to make her food, to look after her. Life took a detour and my daughter became disabled and I became her carer (as much as I dislike the word). Now I want to make it quite clear that I do not resent that in the slightest, I would not want anyone else to do this for her. What I would wish is that we both could have a normal life, that she could be at school and out at the weekend, worrying about crushes and ridiculous fashion, that I could be out at work and furthering myself in some way. That our lives had not detoured. But they have and I think it’s ok to occassionally mourn that, to acknowledge that I wish things were different. To say “honestly I wish my daughter had the opportunities yours does, I wish I had the opportunities you have” I wish we didn’t have a wall around our choices.

I know I’m not alone in this, carers of all ages all over the world face the same thing, it’s a tough thing to talk about though as I am sure none of us want to make our loved one feel that we don’t want to be there for them. Of course we do, what I mourn and again I’m sure it’s the same for most people in my situation is the life we both should have had. I know at times she feels left behind behind by her friends and I feel left behind by life. I feel like my family runs just to stand still as the chance to move forwards just isn’t there, we still fight to every day.

I also know there are those who look down on me for being a “yoga teacher” while their careers have soared, It;s been made clear in both subtle and not so subtle ways. I guess that one is on them for having a narrow perspective of success. It never ceases to sting though when someone puffs up in front of me, boasts of this that and the other then asks with a hint of derision if “I’m still doing my yoga thing” in a way that makes me feel small in comparison.

In reality this year has been a success just in a different measure, Charlotte and I started the year with us both desperately nervous about full time home schooling and by the end of June she had sat 3 GCSE,s at 14, quite successfully I’m sure (we don’t know yet and are rather excited). She is happy and by god that means more to me than anything else in this world and we have time together, a luxury not many families do.

I have freedoms a full time working person doesn’t have, I can run in the middle of a day or go to the gym in the middle of the day while Charlotte is resting. I enjoy the job I have as a yoga teacher, actually I LOVE it especially where I teach at the moment.

Please forgive me though if every once in a while I have a pang of jealously when your teen is off to prom or you get a promotion or buy a new house. I’m happy for you, I genuinely am I just occasionally feel the walls around Charlotte and I.

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