After my biopsy results which were good not great but good I should be happy… ..But im feeling a rain cloud over my head… yes of course I'm pleased but my internal dialogue is saying things like… Ticking time bombby the time we know it will be too late*just remove the whole flap (huge operation… Continue reading Why I will never be truly happy.
It's not all fun and games and sometimes my mask slips.....being strong, coping....doing so well Isn't always possible... That said sometimes you need to let go be raw be honest and say.....I'm struggling......i did this, this weekend.( I'm having a biopsy on the 25th ) *TODAY IM STRUGGLING WITH ............* There were a lot of… Continue reading The mask slips….its ok not be ok… and finding positives
With many conditions that affect mouth opening or sensation, brushing your teeth can incredibly painful or physically difficult . I'm hoping by sharing the things that help me, and in turn this may help you. I've come up with some tips that work for me. It's a lot of trial and error but I have… Continue reading Mouth care….
Short Video to raise awareness
I went to the dentist this week, something that's so so important since treatment for lots of reasons. But today's the reason was for the x-rays was to rule out a abscess or similar cause. I'm getting phantom tooth pain and pain on my good side which looks kind of like this... My pain is… Continue reading My Face Full of Metal!
Nope this is'nt click bait - here's the story of what happened to my pelvis When i was expecting my son in 2005 I had to have weekly physiotherapy from 19-20 weeks pregnant, for SPD (symphysis pubis dysfunction)also it was known, or PGP (pelvic girdle) pain as its now known ,but there was no real… Continue reading I broke my Pelvis !
Hello everyone, thank you for finding my blog if you're new here. I'm Stephanie I have Ehlers-Danlos syndrome and I have a history of tongue cancer which was treated successfully but unfortunately left me with several legacies. I have a feeding tube and I have have issues swallowing speaking. I also have a funky sounding… Continue reading I fell Down the Stairs … #218
My yearly cancer check-up was this Sunday, it was an overflow clinic hence the weekend. I saw Mr Fasemade who’s the boss man – i.e the new Mr Moss. SOOO, where do I start, I have been aware of a white patch on my tongue for a while, it’s not sore or gross looking. It's… Continue reading What does this mean? I Cannot Go There…Not Again
So yesterday i had my scan, it was at high Wycombe hospital. the night before i was struggling with feeling stressed and found myself frantically cleaning which id a default i go to when I'm feeling stressed and over whelmed, its a distraction techniques as I'm obviously worried for the result. Its not helped that… Continue reading Scan done – just waiting for results !
Well as you all know I now live in Aylesbury area and getting to see Mr Moss is a nightmare its 2 plus hours and with my travel sickness, which is now so severe I have to carry sick bags at all times and take 2 different ant sickness meds - which sometimes work but… Continue reading Meeting my new head and neck surgeon, nerve wracking doesn’t come close! & I have a lump in my neck
well as title says really? and I know its not just the kids it G as well. When I'm in hospital or unwell it effects the whole house which is one of the many reason I hate being in hospital, I can see the effect it is having and yet am powerless to help. There… Continue reading Mummy blog – because what ever I go through so do they
Post radiotherapy for tongue cancer - still battling feeding issues and needed TPN to survive. Ehlers Danlos syndrome thrown into the mix and its all off kilter. trying to smile and keep going for my children and husband it can be hard though at times.
HAPPY NEW YEAR EVERYONE Well here we are almost at the 4 year mark and we all thought it would be way behind us and we would have moved on with life but unfortunately not! Here's what going on - we are now living near Aylesbury Buckinghamshire (sounds posh doesn't it ). The kids… Continue reading Update 2017 – still battling on
Well this is a milestone and a half!! First thing's first as far as I'm aware I'm cancer free!!!! I should probably stop there because that's all that matters, but, I wanted to update as to what's been going on for the last probably year since my last post. First of their children are doing… Continue reading 3 years post Radiotherapy. .