Cancer support groups

[Eurekagal]

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???

[kasianne]

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.

[kasianne]

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.

[kasianne]

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.

[kasianne]

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.

[kasianne]

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.

[purpleangels]

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

[Eurekagal]

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.

[Ron50]

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.

[Ron50]

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.