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

Hysterectomy positivity, why and how it relates to Charlotte

A few friends have been surprised by my attitude towards my hysterectomy. There are a few reasons. Firstly I was utterly fed up with bleeding all the time. I was tired and drained. I also worried about the risk of the thickening endometrial layer flipping into malignancy. So to a large degree it was a no brainer.

Now once this was decided I could have taken 1 of 2 approaches, I could have become very distressed by the whole the matter or I could take it as positively as possible.

Here’s the thing, my daughter knows already that unless a cure is found for Cowden Syndrome and PTEN disorders she will have to have the very same operation. Her risk of endometrial cancer is too high to not. She will be far far younger than I have. Most likely in her 30s. If she saw me breaking down how would that affect her? I won’t let her worry any more about the future she faces than she has to already so I’ll continue to focus on the positives of this change.

Plus more periods or pms is definitely a reason to celebrate!!

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

Cure 4 Cowden’s – logo & t-shirt design

My wonderful, talented friend Linda over in Portland who designed the logo for Cure 4 Cowdens last year has been busy working on a t-shirt design for this year. I absolutely adore it. What do you guys think?

The plan is to do the same as last year, take orders for size (possibly colour if it’s an option) then place a bulk order. Just need to find a place to make them!

All profits will go to the PTEN Foundation to aid in research towards a treatment or cure for Cowden Syndrome.

via Cure 4 Cowden’s – logo & t-shirt design

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

Day 5 – Why am I doing this challenge?

Today was a check up for my daughter, she’s now on 6 monthly oncology appointments and 3 years into remission. You would think that means she’s pretty much out of the woods but after her cancer diagnosis she tested positive for a PTEN gene disorder and along with other markers was diagnosed with Cowden Syndrome. Put in simple terms she has a gene defect in a tumor suppressor gene which means she is at high risk of both benign and cancerous tumors. The risks are quite harrowing:-

Lifetime Risk with PHTS (%)

Average Age at presentation

Breast 85 % – 40s

Thyroid 35 % – 30s-40s

Renal Cell 34 % – 50s

Endometrial 28 % – 40s-50s

Colon 9 %- 40s

Melanoma 6 %- 40s

My daughter was 10 when she developed thyroid cancer.

The check up went well, there is a new lump in her breast they want to look at but aren’t too concerned.

Last year I undertook a fundraising year of 260 CrossFit workouts. It was tremendous and the amount of support I received from friends and family was wonderful. I wanted to do a second one starting on the 3rd anniversary of her radiation treatment. Of course I couldn’t do the same thing again and what does and doesn’t contribute to all of our risks to cancer, so I chose one product that has been proven to have links to cancer (alcohol) and one that is often accused wrongly of being linked (sugar) – don’t get me wrong I know sugar is guilty of many, many things. But feeding cancer has no scientific base. I also figure to get people to sponsor me I have to suffer and of course being my daughters full time carer as cancer left her with Chronic Fatigue Syndrome and oostural Orthostatic Tachycardia syndrome I can’t really take on an away from home challenge.

Anyway so that’s us up to date with where I’m at. Back to today. The only difficult point was eating out but thank heavens there is a wonderful whole food vegan cafe in Newcastle (you don’t need to be vegan to eat plant foods)

https://m.facebook.com/Super-Natural-Cafe-788599297887313/

They were wonderful and I had a delicious but burger after checking ingredients with the guys.

What I ate today in pictures and words- I was better at the photos today!

Breakfast

Soaked oats, coconut milk, almond milk, apple, blueberries.

Lunch

Nut burger, roast potatoes, coleslaw, green leaves.

Dinner

Eggs, smoked salmon.

Snacks

Date bar, 100 % dark chocolate with orange oil

Total sugars and breakdown