Hi everyone haven't been on for awhile, just wanted to come on and let off some steam! I'm Jane and was diagnosed with Mycosis Fungoides 5 years ago. I turned 60 two weeks ago and feeling really low. I live on my own kids are all grown up and left home but i have grandchildren, i don't have a partner and really i chose this because i feel no one wants me with cancer, my skin is always dry and bright red, my skin is begin ing to sag and my face looks like its dropped abit, i'm overweight, always tired even my eyelashes at the bottom have fallen out and i look in the mirror feel ugly, i can't see anything nice about myself and also feel this cancer has aged me so much. Who would want someone like that? I know there is people worse off than me but today i feel so down and lost any confidence i had. Sorry for the rant but does anyone else feel this way, i just want to turn clock back to when i was cancer free although i can't. Jane.
Hi Jane, sorry to hear you are so feed up and how you feel about your appearance. Yes MF can be such a challenging cancer in so many ways with regards to appearance and self worth.
Many other cancers, especially amongst the other types of Non Hodgkin’s Lymphomas can all be treated and life can move on in some form…… but on the whole MF sticks with us for rather a long time and yes, it can be hard when people ‘see’ our cancer and this can be a mental and physical battle.
As you know I was diagnosed back in 1999 so understand this MF journey far to well……. but I have to say my Dermatologist but more so the Dermatology Nursing team continually encouraged me to embrace ‘my’ cancer….. to control the battle between the ears, so control the positive influences from family, friends, workmates…… to NOT let it MF define me but for me to pigeonhole MF for what it is - a chronic treatable condition.
I have friends who were diagnosed back at the time I was diagnosed and they are living with a living hell of Parkinson’s, MS, chronic heart conditions.
I am turning 66 this year, my face looks as though I have lived in the sun for years…. and in reality I have due to the years of PUVA. My face looks like a human Basset Hound and I could be done with a big facelift.
I sat with my friends with the other chronic conditions one night and we all agreed that we have to embrace ‘who’ we are - not what we are.
It’s our body, it’s our challenge it’s our destiny and even although we are all proud Highland males we agreed that we are all beautiful inside and out….. and so are you.
See I have said you are beautiful inside and out…. and you go need to believe ((hugs))
