Finding life hard.i know i have the fight for more fight.
Knees are dodgy.got bone cysts in knees.need to be drained and rebuilt with new knee cap.
Im a difficult case.ive heard that before.will need it all done bespoke made to fit.
I used to love dancing as i did other things.maybe ill be able to.i know i can.
As if cowden syndrome isnt enough to deal with my knees are playing up.before lockdown had xray said wear and tear.got mri thursday and then chat with consultant.
I shall SHALL continue to fight. I need my me time to put my head in the right frame of mind.
I will CARRY ON.
I too have cowden syndrome and many a time
I think why me.ive had 3 operations on thyroid.1 to take a sample, the other to remove half and then 3rd total thyroidectomy at 30 was when it wrapped around my airpipes in a dangerous way and had to come out. It was stopping me breathing.
I had lost my mum to cancer and was adamant if ever i had children id get regular mammograms so my children could have a mum around.at 42 cancer was found..I had a mastectomy and reconstruction.3 months later i had a reconstruction on other breast and chemotherapy which i hated as was sick as a dog.
It took 1 yr to get the results from a blood test as i asked for regular mammograms at 40.
I was put on tamoxifen. My periods started to play up.
Had to have polyps removed on and off for a few years till i had a prophylactic hysterectomy. At 50 i decided i wanted my left breast gone.i had a feeling.mammograms were clear but a grade 1 lobular cancer was found.
Colon is being monitored as is kidney where they found a mark as an incidental finding. 2 sites on the 'cowden list'.
I have had other thimgs to contend with unrelated to cowdens but this is something that always stay with me. I keep myself to myself and dont talk about cowdens with people who dont know me well. I have days the fight gets me down.grappling with thyroid tiredness and carrying on can be overwhelming but i try.
To anyone who has a rare disease, dont let anyone stare at you.we are unique.and for some reason , ive been picked.
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