neuroblastoma long term effect


Iam Kim a 35 year old female

My story begins in a early stage of 2 years old, I had a very thick tummy but the childnurses where my mom went to said that i eat to much.

but finally and lucky for me there was one day a doctor who's recognized my tummy. from 1 to another in a few hours the world turned upsidedown for my parents.

i was diagnosed with stage 4 neuroblastoma. i had big tumor like a orange in my tummy. to remove these cancer cells i  got chemo, radiation and surgery.

unfortunally i got  late term effects,

tired, i need 8-9 hours sleep, activities are cost a lot of energy (thats no problem, when you organise your day)

like short breath,  my long volume is not as big as it should be. (not a big issue, hihih idont like running or intensive sports Laughing)

a very small stomach, eating more small meals in stead of a big one, sensitive for dairy food ( i love tapas sushi Smile its kimmie food)

around 22 years i got a lot of pain in both hips. after visiting my oncologe in the hospital she send me to a orthopeed, after a mri and rontgen they told me that i had heupdyslasie at two sides. i got an ganz osteonomi and this worked fine for about 12 years. know the pain is back!! i have to wait until i cant have the pain any more. at this stage i am to young to have two totaly new hips and i think they think its not worse enough at this moment. and sometimes they are right.

i have fertility problems. i dont make female hormonen because of the radiation and chemo, menopauze, no possibillity for children. and that is next to the hip pain the whorst!! it cost me a lot of tears already.. and stil it hurts.

it was a relieve to read a lot of story's about neuroblastoma. unfortunally i cant find people or sites in the netherlands with older survivors. it would be nice to read and write about the live of a ex neuroblastoma patient.

i dont know if its treu, but i was at the hospital last week, for a long term folluw up, i have a visit once a year or two years, at umcg hospital te groningen. this time there was also my radiologe doctor who had given me the radiation. i saw a picture of how they blocked parts of my body. see told me a lot about my body.  she looked at my body and she told me you could see exactly wat was radiated and what was blocked. so fine to hear why my body is.what it is. I have a very small waist and thicker legs its totally out of proportion. are there people who recognizing this?

by the way iam sorry for my language, i hope you understand what i was writing.

greatings kim