topic Re: Cancer support groups in Living with cancer

Cancer support groups

Eurekagal — Thu, 22 Mar 2012 10:59:37 GMT

Hi. My first time here. I was advised to try this site by the Familial Cancer Centre at the Peter Mac in Melbourne. I am 42, the mother of 2 young children and was diagnosed with rectal cancer in Nov 2010. Had my whole rectum removed and an ileostormy bag for 3 months. Now I have been diagnosed with lynch syndrome - an inherited faulty gene that causes lots of types of cancers, even though I have no family history. My main problem is loneliness and isolation. None of my friends have ever had to deal with a life threatening illness and most of their parents are still alive so mortality is the last thing on their minds. I live in a regional area with a new oncology centre, but have found it impossible to find a local support group for any other cancer other than breast (there are four support groups for that!). Starting to feel a bit like a second class cancer citizen as everywhere I go I see fundraising and support for breast cancer but nothing for any other type of cancer (even though bowel cancer kills more people than breast). Don't get me wrong, I am glad that the support is there for breast cancer, but doesn't every cancer patient deserve the same level of support???

Re: Cancer support groups

kasianne — Thu, 22 Mar 2012 11:33:07 GMT

Hi I know exactly how you feel about support groups and fundraising. My mother had breast cancer 16 years ago and is still going strong and she has always encouraged me to support fundraising for that cancer as sh expressed I was probably likely to get it as well. Amazingly I did get cancer but not breast cancer it was cancer of the oesophagus. I had symptoms for many months prior to diagnosis and would never have guessed my symptoms would be related to such a life threatening disease. There are support groups around my area many of the well known cancers but I have not located one for mine although during my chemo I met others who had the same or stomach cancers. The good thing about this site is there are people who have suffered from cancers I never knew existed and there is some solid advice given by others and that is regardless of the type of cancer they have suffered as the diagnosis of any type is scary and we all have to work our way through the minefield of treatment with the symptoms often being similar due to the cocktails we inflict on our bodies.

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kasianne — Thu, 22 Mar 2012 11:33:24 GMT

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kasianne — Thu, 22 Mar 2012 11:34:00 GMT

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kasianne — Thu, 22 Mar 2012 11:34:10 GMT

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kasianne — Thu, 22 Mar 2012 11:34:38 GMT

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purpleangels — Thu, 22 Mar 2012 19:38:12 GMT

Hi there! My husband has a very rare form of cancer- there are about 240 people in Australia with the same type, but he is only the third reported case world wide to have it in his peritoneum. There is a fabulous website for EHE sufferers, but no face to face as such. We are lucky that there Is a 'generic' cancer support group here at Tweed (although he has never been well enough to attend)..... That is available should he need it. Have you found a social worker attached to the hospital yet? Ours here at Tweed is FABULOUS!!! She has been there since the day of diagnosis three years ago, full of advice, calmness, a MASSIVE shoulder try cry on- I have been stopped on the side of the highway several times on my way to work bawling my eyes out to her on the phone.......and she runs the support group. We also have the volunteer organization up here Tweed Palliative Support who have also been amazing. I went through the phone book and took down all the numbers of vaguely cancer related groups in my area until. Found one that could help. It could also be worth a phone call to your local council.....silly I know, but that is how I got onto the Palliative Care support group up here.....and it is not just for people who are dying.....they specifically state that their services may be used for as long, or as short as you need. I had a lady for example, who used to come in the afternoons after I had finished work, and while I cooked dinner and sorted out the house/ my husband, she took the kids for a walk, or in the pool, or put them in the bath for me, folded washing, just for two hours a couple of days a week- a massive help. (my kids are now 4 and 6). Good luck and hope this helps!! PA

Re: Cancer support groups

Eurekagal — Thu, 22 Mar 2012 20:03:20 GMT

Thank you kasianne and purple angels. I will certainly use this website for support from now on. I have tried finding support groups via the local office of cancer council NSW. They gave me the number of the local oncology social worker, who I rang but could never get hold of. Another social worker eventually got back to me and left a message saying they didn't run support groups and told me to contact the cancer council! But I will try the local council - thanks for that suggestion, purple angels. I am seeing a counsellor who has been a massive help, but I would still like to connect face to face with other people who have been in that dark and scary place. Sometimes I feel as if I am walking around in a daze whilst the whole world is going on around me. But I can't continue to do that as my two boys (now 6 and 😎 really need me.

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Ron50 — Thu, 22 Mar 2012 22:28:15 GMT

Hi Eureka gal, I agree ,if it's not breast cancer ,it's not real cancer. I always try to get along to my local relay for life. Last year I don't know why I bothered,not one of the pink brigade even spoke to me. I am a colo-rectal survivor. I had dukes c 6/13 nodes involved. I had surgery and chemo in 1998. I have been ca free ever since. One of the things that surprises me is the lack of research. Sure each week they come up with a new idea to try to kill ca ,but wouldn't you think if some one had survived for fourteen years they would like to know why. How are you going? Are you still having treatment or are you ned at this point in time? Ron.

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Ron50 — Thu, 22 Mar 2012 22:28:44 GMT

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Ron50 — Thu, 22 Mar 2012 22:29:06 GMT

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bev — Fri, 23 Mar 2012 05:49:07 GMT

Ok, I had cancer of the uterus, almost five years ago, but have been told also that I have Lynch Syndrome. I volunteer at our local Cancer Council Information Centre at our local cancer care centre and that is also where I had my radiation treatment and have my check ups there. We have a lot of information there for anyone, to either call 131120 to find out where your particular needs can be found, or just check out the Cancer Council website. I am also a support volunteer for Cancer Connect. Cancer Connect is where you contact 131120, in Sydney it is then option 3 and they take your details down and then match you with a volunteer. Contact is only on first names and only over the phone. Please send me a message if interested and I can tell you more. I do agree with you also on that it seems all they talk about for women is breast cancer when there is so many cancers that can affect us. On this site a while back now there was details about a programme called FORGOTTEN CANCERS. You can contact them on 1800 068 289 or 03 9635 5371. It is questionnaire and dna testing. Good luck

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Fri, 23 Mar 2012 06:19:07 GMT

Hey Eureka, Hope you get the support you do need. Im in another category Head and Neck, but Ive never thought of each cancer type being different from the other. I just class it as Cancer wherever it is in the body. I think its irrelevent what part you have, I guess Breast is more significant in alot of women than other types of cancers, I dunno? Cancer is Cancer, its nice when you have someone with the same diagnosis to compare notes with, but in the end it affects us all the same. Turns our lives upside down, treatments whether Radio, Chemo, Surgery, the fear of recurrence, the murky future. I wish there was more info on Skin Cancer, SCC in particular, that I can relate too. Take care and stay safe! Leesa

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Terrafirma — Fri, 23 Mar 2012 17:56:51 GMT

Hullo Eureka gal :) You may find it useful to browse through my webpage http://bestcancersites.com/colorectal/ for links to colorectal information and support websites, and other cancer-related websites you may find valuable on your journey. This is a good one: "My CRC Connections is a social networking community started by the Colon Cancer Alliance in early 2008 for those affected by colorectal cancer, with the address http://mycrcconnections.ning.com. When I checked on 28th June 2008 there were already 560 members, and when I checked on 15th May 2011 there were 2,225 members. You can have your own webpage with a wall for comments and a blog, you can upload photos and videos, and there's an active message board (forum) and live chat. Some groups have been set up within the site including "CCA Buddy Program" and "Young Survivors". If you're looking for an online community to share information and support with others affected by colorectal cancer please do check this one out." I know it's not face to face meetings but many people find internet support groups open to anyone around the world very helpful. Cheers and good luck! Ed.

Re: Cancer support groups

Eurekagal — Fri, 06 Apr 2012 21:32:49 GMT

Thanks everyone for your posts. They really help. Just have colonoscopy and gastroscopy and all clear. Skin check also clear. Now just need to worry about uterine and ovarian but will be having them removed later this year. I tried the local oncological social worker but apparently they don't run support groups. May be I need to set one up but still only 1 year out, not sure I can do that. Does anyone here know of support groups in the Byron bay, Lismore, ballina area?

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SILLY — Tue, 10 Apr 2012 07:50:16 GMT

I mentioned these online support sites commenting on the blog about online chatting. One is Inspire Health and Wellness -groups for lots of medical conditions,including cancer groups. It has about 800,000 members. Another is The Rare Cancer Alliance. RCA also has a group on Facebook. I think Inspie may also have a Facebook page or group . I know of about 10 people in Australia with my cancer and I've met them through these sites.I belong to a Facebook group with 80 members from around the world,mostly from the USA. It is good to talk to people with the same cancer. We have a special bond . We are hoping that a group will be formed here for us . It would mean so much to us. In the USA some people manage to actually meet others with the same cancer because of the population difference . If you have a rare cancer here you may never actually meet another with your cancer.

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bevvzy — Wed, 05 Apr 2017 11:16:36 GMT

Hi all, im not really replying to anyone but I thought here was where I should post my question. I was told that the cancer council site had a list of the support groups in various areas, but I havent found one in Orange NSW, does anyone know about this? Online is great but I still feel really isolated due to my very indiviudal situation ie Im a paraplegic also and although young, well too young to be in a nursing home, I am in one, and so I feel so isolated I would like to physically meet people in the area with cancer or after cancer. I dont know anyone really in the area either, my family are not close by and I didnt have a choice of the nursing home ie I would have opted for one near home but it wasnt available at the time

regards and thoughts to all bev

ps invasive ductal carcinoma, stage unknown yet as JUST diagnosed, only know high grade on Nottingham scale. Mastectomy on the 20th of this month, so really would love to connect with a group before then

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Kim_CCNSW — Thu, 06 Apr 2017 05:20:36 GMT

Hello Bev

Glad to see you've been looking around the Cancer Council NSW website and I do apologise currentley the Directory of Cancer Services / Cancer Support Groups is "under re construction".

As the Cancer Support Group Coordinator, I can share with you that local to you in Orange, there is the Orange and District Breast Cancer Support Group based in the community and led by two Volunteers who have undertaken the Cancer Council leadrer training. Their details to contact follow:

Leader Name: Libby Douglas Phone number: 0411 518 266 Or Donna Bennett P: 02 6366 8176
Email: donnabennett176@hotmail.com

Have a chat to Libby or Donna and they will be able to describe how their group works and the current group of ladies who attend. The group is also open to carers and supporters. They meet the first Wednesday of every month 4.00 pm (except January) at Home and Community Care Centre (HACC), 286 Lords Place Orange.

Regards

Kim

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Ridgy — Fri, 14 Apr 2017 00:43:12 GMT

Hi Eurekagal .... maybe this was your chance to start a community for your type of cancer as you say there are lots of people with it. I'm four years too late to reply but if you're still online I hope you got help. Since my diagnosis/surgery in Nov 2016, I've been thinking the same as I'm in a city outside the nearest capital and there is no support group for my "uncommon/rare" cancer: neuroendocrine tumours of the small intestine. In fact, it was hard to find out information about my tumour(s) and Dr Google was the wrong place to search. What I did discover was the Cancer Council helpine. It put me onto a hospital with knowledge of my condition and I was sent out a booklet. I also discovered the Council's ENRICH program, which was amazing. Though most in my class had lung, bowel or breast cancer ... at least I got to hang out with people going through the same thing as me: cancer! I had to travel to the sessions, bus and train taking up to 40 mins but every Saturday I looked forward to going. Who knew there were people out there such as exercise physiologists, or therapeutical yoga. I'm still shocked over my diagnosis and coming to grips with how it is impacting on my life, but as each day passes I feel less angry, and for that I'm grateful to the NSW Council Council. I'm sure the VIC Cancer Council or the Australian Cancer Council put you in touch with the right people! I hope so as everyone who faces the big "C" as you so rightly said, deserves and needs support! Thinking of you, you ain't alone 🙂 Ridgy

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bevvzy — Fri, 14 Apr 2017 10:32:11 GMT

HI Kym, I did locate a support group in Orange but they meet at a place called Sumptcious and it has no wheelchair access. I did find an informal group in Ornage called chickchat and have been chatting with some members through messenger. This is such a wonderful site here in so many ways, this and BCNA have been my life vest!