Episode 37
54 mins
Michelle & Simone - Living without a Stomach
This episode is an interview with Simone Busija and Michelle Lykokapis. These are amazing individuals who are like Rane, living (and thriving) without stomachs. Michelle is an artist, a meditation teacher, and the main admin and creator of the Support Group for Partial and Total Gastrectomy on Facebook, a group with over 2000 members that helps support individuals and the families of individuals without stomachs. Simone is a Community and Corporate Fundraising Coordinator at Peter MacCallum Cancer Foundation (where Rane received his treatment), a board member for No Stomach For Cancer, and organiser of the Melbourne No Stomach For Cancer walk, which is happening on November the 18th. This is a great cause to help raise funds for stomach cancer awareness, and as we will hear, some of the money even goes to local researchers. As we will also hear, stomach cancer is the 5th most common form of cancer, yet is the 3rd leading cause of death amongst cancer - this is mainly because it is not detected until too late, so we can really help the cause by raising awareness.
In this episode, we learn about Michelle's backgrounds, what they do to support others without stomachs, and why their stomachs were removed. We learn some misconceptions around cancer, and about living without a stomach. We also hear about No Stomach Cancer, the upcoming walk and what people can do to help.
This episode is very special for Rane as it marks 3 years since his stomach was removed via a Total Gastrectomy, just a few months after he was diagnosed with stomach cancer.
NOTE: There is some discussion on topics that some might find disturbing.
Links:
No Stomach for Cancer: https://www.nostomachforcancer.org/
No Stomach for Cancer Walk 2018: https://www.mycause.com.au/events/teamaustralianostomachforcancerwalk
Gastrectomy Connections: https://www.gastrectomyconnections.com/
Support Group for Partial and Total Gastrectomy: https://www.facebook.com/groups/supportgrouppartialtotalgastrectomy/
Family Ties: http://familyties.org.au/
Rane and Jo's Yoga For Digestive Ease workshop: https://www.facebook.com/events/746304519039860/
Highlights
Click on a timecode to play from that time in the recording.
3:10 Michelle and Simone introduce themselves4:45 How life has changed since their stomachs were removed.
5:45 The twelve spoons theory
6:30 Michelle explains Lynch syndrome
9:30 Being your own advocate - Australia’s healthcare system.
10:56 Peter Maccallum Cancer Foundation - “I hope I never see you again”
11:23 Were there any practices like meditation or journalling that helped Michelle or Simone through the process?
12:48 Simone on having the CDH1 gene, and on the hard decision to receive surgery despite being fully healthy.
13:27 Michelle’s story - the kali card.
16:05 On the recovery from surgery - how much socialising revolves around food.
16:41 First impressions on the internet are not always good.
17:33 Has anything changed for the positive post surgery
21:43 On gratitude.
23:10 What are some of the common misconceptions or assumptions people have around cancer or living without a stomach?
26:18 Looks can be deceiving - “no one sees the bad days”
27:53 The hunger sensation
29:38 If you walked into a yoga class, is there anything you would like the teacher to know about you?
35:26 How common is stomach cancer? Michelle and Simone talk about their diagnoses.
40:14 Rane’s “journey”
42:20 Knowledge could be better amongst GPs
42:43 No Stomach for Cancer - the walk
44:55 Yoga for Digestive Ease workshop
45:21 The brain gut connection, the vagus nerve
46:10 Michelle shares advice for people recently diagnosed with cancer
49:02 Rane talks about setting up a facebook group
51:15 Getting the nutrients your body needs without a stomach.
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