Cancer support groups

[bevvzy]

woops hang on, that must be a different group as the one at Sumptuous cafe meets at 6pm, which is another bit of a prob being in the nursing home, their silly early routines. I have spoken to Donna or Libby, cant remember which. Lately my short term memory has gone, overload I think.

[madfisher60]

Hi Ridgy I was Diagnoised with the same cancer back in 2009 after nearly 5 years of investigation to find out whats wrong with me. Living with NETS is a life style change and in most cases people can live a relativly live  long and near normal life. That blue book you were sent was from the Unicorn foundation which has support groups in nearly every capital in Australia. Back when I was Diagnoised there was no such thing. If you are unable to attend any of there meetings you can always join in on a closed forum they have and they regulary have group hook ups via the internet for those that are intrested. Happy to help out with any questions you may have or wish to ask. I have had lots of surgery including small intestine and have had 11 rounds of PRRT and also been involved with clinical drug trials finding new drugs avaiklable to us. good luck and hope to here from you.

[Ridgy]

Dear Madfisher60,

Thank you for messaging me. It is comforting to hear from someone with a similar condition though as I understand it mine didn't metastasize into another organ (eg: liver) so no PRRT required. But this wait and see is stressful as you wonder whether they should be doing something to stop future spread given it did metastasize x 3 micro tumours into my lymph nodes. I was cut wide open this time as a previous surgery left me with incisional hernia and adhesions so the recovery from the NETs surgery has been slow.  Most days I wake up feeling awful. I am on a healthy food and fitness regime but I can't say I feel great. Everyone else in the family who follows my regime look and feel wonderful in days/weeks but I struggle with bloating, cramping, constipation or loose bowels, tension headaches, stomach pins and needles, nausea & mood swings ( get upset easily). If I overdo the exercise I hurt for days where the incision is. The surgeon blames my age ( female therefore menopause) and everyone else says I've had open surgery so don't expect so much! It has been 7 months since the surgery and 12 months since I found out I had NETs. I look forward to the day I start feeling better!! As for the support forum, I reside outside a capital city so the closed online forum sounds good. Thank you for passing this info on and I'm glad you are doing well 8 years post diagnosis 🙂

[Ridgy]

Dear Madfisher60. Thank you for messaging me. It is comforting to hear from someone with a similar condition though as I understand it mine didn't metastasize into another organ (eg: liver) so no PRRT required. But this wait and see is stressful as you wonder whether they should be doing something to stop future spread given it did metastasize x 3 micro tumours into my lymph nodes. I was cut wide open this time as a previous surgery left me with incisional hernia and adhesions so the recovery from the NETs surgery has been slow.  Most days I wake up feeling awful. I am on a healthy food and fitness regime but I can't say I feel great. Everyone else in the family who follows my regime look and feel wonderful in days/weeks but I struggle with bloating, cramping, constipation or loose bowels, tension headaches, stomach pins and needles, nausea & mood swings ( get upset easily). If I overdo the exercise I hurt for days where the incision is. The surgeon blames my age ( female therefore menopause) and everyone else says I've had open surgery so don't expect so much! It has been 7 months since the surgery and 12 months since I found out I had NETs. I look forward to the day I start feeling better!! As for the support forum, I reside outside a capital city so the closed online forum sounds good. Thank you for passing this info on and I'm glad you are doing well 8 years post diagnosis 🙂