Not the best of days/weeks/months

It’s not been the best of times recently and today has just tipped me over the edge.

I struggle as I’ve talked about before with the responsibility of being a carer. I feel the weight of doing right by my daughter, by all my children so very much.

At the moment I’m trying to get her the help and support she needs to not only do well at GCSE but to be able to do A levels. Did you know there is no at home provision from the local authorities for A levels? It only goes up to GCSE. Disabled kids apparently don’t need to have a future or a right to university.

I have a few leads to follow on that and hopefully will get somewhere. But sometimes the fight just exhausts me. I am determined that her disabilities won’t stop her from achieving what she can but by god the world isn’t making it easy. Then there’s her upcoming surgery which makes me sick with worry.

Throw on top of that a few large unexpected bills (there’s the holiday savings gone) a parking mistake that led to a ticket and people being generally mean and I’m just done. I really do try to remain positive and count our blessings but right now I honestly just want to cry, curl up in bed for a week and be left alone.

I wish the universe would occasionally just give us a break.

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

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!