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 bomb
- by the time we know it will be too late
*just remove the whole flap (huge operation game changer 4 speech etc)
- I don’t believe results
- I couldn’t do treatment again
- on some level I know its back, I just know it.
- The fear of cancer festering in my mouth, disgusts me.
I feel guilty for my family caring for me, from G helping with meds to picking me up when I loose consciousness with POTS and 5 million other things. Knowing I WILL NEVER GET BETTER, haunts me.
I feel terrible that I’m not jumping for joy with the news, but I can’t not just because I don’t believe it but because its not over, and I know I will never be over.
I never answer how are you? Honestly NEVER….
I’m trying to remove negative influences from my life, causes of stress, its hard.
I’m exhausted with my pulse running at 135 beats a min for several hours a day its exhausting, feeling i can achieve so little. My brain planning crafts and fun things or just pottering round the house. And I fail over and over.
To give an idea of my daily battles, this is my diagnosis.. think complete
EDS Ehlers Danlos Syndrome
POTS postural orthostatic tachycardia
Fused symphysis pubis bone.
T4 – 7 laminectomy (for cyst on cord) – muscle damage and pain at surgery site. Plus marked learners in legs, nerve pain and numbness.
TONGUE CANCER …. half tongue removed, neck dissection, forearm flap reconstruction and radiotherapy. Leaving a gift of nerve damage and crps on arm and section of neck.
Radiation fibrosis neck and shoulder.. pain weakness.
Speech problems voice change
Secondary hypo and hyper thyroidism
Hypoglycaemia (no clue why.. but sucks 3.3 4pm today)
PEG feeding tube
Joint dislocations or subluxation daily
I’m completely aware this looks like i played diagnosis bingo! But this is my everyday.
I would hope no-one understands how this feels and equally I would never understand being in your shoes.
This isn’t written for pity or for woe is me, more to explain myself, maybe make excuses for myself i dunno?
I wish I was different..personality, health, looks, but I know thats not unique. So I hide in my phone.
You know those 600 + faceshields we made and gave away for the nhs and keyworkers….. in my sick twisted mind I thought…maybe this will get me some good karma? … bloody ridiculous and selfish i know.