WHO ARE WE:

Originally the group started in 2019 after the founder’s diagnosis in 2017.
Our founder, Sandra Johnston had many questions and wanted lots of information and felt very alone – She wanted to:
1:      See the scars,
2:      Find out about costs,
3:      Options,
4:      Other People’s journeys,

Also to share the information she had learned through her consumer advisory involvement in GCPHN & Breast Screen at the time. e.g. Refunds for breast forms from Medicare. Putting in feedback (compliments & criticisms) and advocating for ourselves.
Due to one of our original members introducing a lovely warrior with Ovarian Cancer carrying the BRCA gene who also had to have a double mastectomy, we decided to open the group to Women with ALL Cancers. Hence we became the WOMEN’S CANCER SUPPORT – GC and “Rainbow Warriors” at events.

 We are now a tribe of 780 + cancer warriors and/or survivors.

WHERE ARE WE:

Postcodes from 4207-4230 & 4272

We put members into a subgroup for their postcode and have a Local  MENTOR Co-ordinator  for each group who arrange regular meetups, walks, coffee or lunches, transport for their local members.
We also have 2 or 3 Buddies in each Local group so that when a new member joins our group she is added to the Local group Chat where the newbie, and the Local mentor introduce themselves to each other and the rest of the group and then one of the buddies from the local chat group offers to BUDDY the new lovely ‘showing them the ropes’ for the first while.

ALL members are able to attend any and ALL of the events on our calendar.

We also have smaller sub groups of “Types of Cancers” (e.g. Brain, Colorectal, Lung, Lymphoma, Ovarian etc). We add the new member to their TYPE (or COLOUR) of cancer Group, and we have an Ambassador for each TYPE and the Ambassadors here do same as Local Mentors  Co-ordinators, introducing one another and again someone usually volunteers to BUDDY the new lovely. Inside these TYPE groups the members chat about THEIR cancer and any breakthroughs, research, trials, meds etc there might be, sharing information and sometimes they meet up to chat about THEIR type –
e.g. Green is the coloured Ribbon for Lymphoma so the Greenies have a meetup or attend any events that are for Lymphoma, as well as any other event listed on our Calendar.  .

WHAT DO WE DO:

We run the public Facebook page where anyone can see posts etc and prospective new members come and ask to join the PRIVATE GROUP. Once we approve the new member we input their data into our file and add them to the LOCAL & TYPE groups. We send them the “Welcome to Newbies” information by email and each week WELCOME the new members on our Facebook page.

We have a calendar we post for each month with ALL events that re relevant to our members – e.g. Pamper Days,  Exercise classes, coffee meet ups, lunches, activities, and any webcasts etc that relates to our group.
We raised funds selling chocolates and bought items to start giving out care packs to our members when they were in hospital. A couple of our members raised more funds baking and stalls ($1150 for making cupcakes, $2500 from stall at the footy, raffles and a soirée).

During Covid some of our members found it difficult getting to the Cancer Council, so we bought some to take to events for our lovelies to try on there. We now have quite an array of wigs and headwear to lend to our lovelies.
We make and donate port/seatbelt cushions and the small wear-at-home chemo bags to the chemotherapy departments at the GC hospitals.  Also dilator bags are distributed to radiation units for women having pelvic radiation.

Beauties Feeling Fabulous donate beautiful PONCHOS, in beautiful bags sewn by other charities, and we deliver to ladies in hospital having mastectomies and hysterectomies etc
Sue Donohue makes & donates keychains to be given to every new member – we give them one of their CANCER COLOUR (e.g. Green for Lymphoma) and have a little spiel when handing them to the newbie. “When you put your house and car keys on this, every time you come and go from the house or car, and you look at this key chain we want you to remember “you are not alone – your tribe is right there with you”.

Cryotherapy Socks and Gloves were said to prevent peripheral neuropathy from Taxol type chemotherapy so we purchased 25 sets to lend to our lovelies to wear during this time.  GCUH & Tasman Health have the COLD CAP women can wear to prevent losing their hair – it’s the same cryotherapy. We did a poll on National Cancer sites asking for experiences and the result there and for our ladies who have used ours is 90+% success. Hospitals are fiddling about with exact temperatures, times etc – meanwhile our warriors are very happy to be without neuropathy.
We advocate for ourselves as I’m passionate about these lovelies’ asking questions, getting a second opinion and doing feedback etc to ensure they get the best outcome. I advocate through the Consumer Advisory Councils for GCUH & GCHHS, GCPHN & Breastscreen. We have done petitions and lobbied in the past with some success and others not.

Presently we are advocating for prescribed Medicinal Cannabis to be accessible to patients as an inpatient in GCUH (& ALL QLD HOSPITALS) especially vaping as this is the form people with cancer need as it works within a minute, lasts for 3-4 hours & does not have the side effects like constipation, nausea, feeling dizzy or heavy drugs. Another is to have a nurse available at home for palliative and end stage patients. It cost about $2-3000 a day to have a patient in palliative care – compared to a nurse calling into home twice a day (& on call) while the patient is at home. 25 days of palliative care at (av) $2500/day = $62,500 for ONE patient. Two patients would be $125,000 which a nurse and vehicle could care for MANY patients for the same cost.

One of our lovelies makes badges with their name on it and a general ‘Women’s Cancer Group’ badge. We wear our name badge to events so everyone knows everyone. We wear our WCS Badges to our medical appointments to promote the group and start a conversation with ‘strangers’ about support etc. And hopefully have them join the group for support.  We Recycle as much as we can. Members give us their Drain bags (used to hold drains from mastectomy) and we either use them for holding the cold therapy socks & gloves and  we pass onto a charity who use them for aged care homes for residents to carry mobile, book, pen etc around their neck to save losing. We are wanting to be able to recycle the kidney shaped pillows charities make for women having mastectomies to wear under their arms. Presently hospitals won’t take them even laundered, but we will find a way. We cannot put them in landfill.

We hold an Expo every year and have speakers on MANY subjects with 100 (max for venue) attend our members
LOVE IT as they learn so much. Even though Medicinal Cannabis has been legal in Qld since Nov 2016 our members know very little about, STILL.

We had a Cannabis Expo in November with the BEST speakers from Qld – Dr Ben Jansen (cda.com.au) Des Harp, compounding pharmacist doing 1000 scripts a week, and Drs from CannIHelp compassionate supply at $30, Michael Balderstone (Nimbin) on the green market & legality and a representative from Medlab as 50 or so of our lovelies who were being supplied FREE Medicinal Cannabis on studies and trials by MEDLAB.  Since then Medlab have gone into liquidation, however we have sourced other avenues for our to obtain affordable medicinal cannabis that is easy to get.

HOW DO WE DO IT

Care Packs.
We were donated 1000 brown paper bags, so we hold craft sessions where we decorate, paint, and make those bags look really nice personal & pretty. We have a packing session where our group help pack 25 or so at a time. click here READ MORE

Port/Seatbelt Cushions
Members come together for a sewing/social day to cut out, sew, & stuff them. Sometimes other charities sew some for us when we need them asap. Some members sew them at home. One of our lovelies sews at home and our tribe delivers them to the various chemo treatment centres, including GCUH, GC Private, Pindara, John Flynn, Icon Southport & Tweed hospital.  click here READ MORE

Pamper Days:
There are a few different pamper days we have become aware of, and these are posted on the calendar with the link to register. SOME are also listed as an EVENT on our Facebook page. Some of our members who have been well for a while, volunteer to help at the pamper days – as a hairdresser, nail polishing, hand massage and as welcome & check-in. click here READ MORE

Wigs & Headwear :
One of our lovelies holds our large library of wigs and headwear and can bring some to pamper days and events or meets up with lovelies to FIT the suitable wig and or headwear. She washes, trims and conditions the wigs etc. click here READ MORE

Ponchos:
We deliver the poncho donated by beauties Feeling Fabulous (BFF) (link: https://www.facebook.com/beautiesfeelingfabulous/)  the day before member is due for surgery at Robina, Tweed or private hospital or the member picks up a poncho from one of the members our tribe near them. click here READ MORE

 Advocacy:

We attend various conferences, summits, expos in relevant fields to learn information to share, and to have a ‘voice’. We do petitions, lobby and through my Consumer rep duties bring up issues needing to be fixed. We have encouraged a few members to join Consumer Advisory Groups and the like so we have a voice in a few places. click here READ MORE