Support and information for male carers

A place for Partners going through the worst to support each other.
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srichard
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Re: Support and information for male carers

Postby srichard » Wed Apr 20, 2011 9:19 am

Much of that is already on the link I have provided if anything more in Melbourne I can provide additional info or share some of my past experiences i believe may still be relevant. I also dealt extensively with Hospitals and the health system because I had applied for exec public projects jobs in the past.
Peter MacCallum Institute
Mornington
Cabrini
St Mercy/Vincent Private
Moorabbin Cancer Ctr
The Alfred Health
Ballarat Health
Bethlehem Palliative Care
Monash Centre and Palliative Care

What to expect from chemo, radiation, pain management, hard drugs administration and record keeping, walker services and or ambulances, aids and equipment, just to name a few things.
Of course cooking too I have been doing it for the past seventeen years.

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Re: Support and information for male carers

Postby schoolteacher » Sat Apr 16, 2011 4:05 pm

What a useful link!!!! TansS it was great to see a post from you :clap: It sounds like WA is doing some good things!

srichard
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Re: Support and information for male carers

Postby srichard » Sat Apr 16, 2011 3:22 pm

Hi Simon I think I can help because I have been a carer for my wife on and off for years as she went through recurrences
for starters
talk to you later

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Re: Support and information for male carers

Postby Gail » Sat Oct 23, 2010 9:26 am

What a wonderful Idea Tanya, that is forward thinking. :clap: The best thing I went to during treatment was at the Qld Cancer Council and an artist came and showed us how to paint a still life painting of a fruit bowl, loved it.
"You Gotta Laugh!"

Gail


Diagnosed April 2006,Lumpectomy,17 of 25 nodes positive, chemo, radiation. Finished treatment March 07
Diagnosed July 2012 cancer of mediastinal(nodes around lungs and heart)pelvis and spine. Up for the fight!

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Re: Support and information for male carers

Postby TanS » Sat Oct 23, 2010 1:14 am

Great thread Simon. Since we have been in Perth I have found that this state is quite advanced in the support systems they provide.

One of the best as far as being practical and helpful is the cooking classes for male carers or men who have lost their partners to cancer.

Its more relaxed than just sitting around in a circle ect. You turn up, learn to cook a new dish along with side dishes ect in small groups of about 8 - 12. Once the meal is cooked, everyone sits around and enjoys the fruits of their labour along with a glass of wine or beer. It's a way of bringing men together in a relaxed atmosphere where they can interact and support each other.

Best wishes to you and your wife.
:hugs:
Tanya
"Promise me you will always remember:
You're BRAVER than you believe,
and STRONGER than you seem,
and SMARTER than you think."

Christopher Robin said this to Winnie-the-Pooh, written by A. A. Milne in 1926!!

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Re: Support and information for male carers

Postby angel33 » Fri Oct 22, 2010 3:26 pm

So true Simon and well said!

Naturally, through my journey I worry about my hubby also!

:grouphug:
EBC 1997, bony mets Dec 2000, liver mets april 2007, chemo since

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Re: Support and information for male carers

Postby jezza » Thu Oct 21, 2010 9:21 pm

As Janette says this section of the site was set up some time ago and yours is the first post.

I think the Aussie Forum forum was started for many of the reasons that you talk about....a place where ppl with breast cancer could chat and exchange info...There was nowhere in Australia before this forum. There is so much here that people would never find out about....how to find your way through the private/public health system...dental care available that many didn't know about...all different sorts of support...the list goes on.

What you talk about is SO needed. There is nothing for the guys. We have a couple of partners who post occasionally....not in the advance section I don't think.We have an annual gettogether once a year and I know at last years one some of the partners really got talking and there was an instant bond...I'm sorry that the conference wasn't more help to you. Its a shame when you go to something like that to hear well meaning ppl talking about something that they know very little about!

Its certainly something that needs to be addressed and I wish you well.

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Support and information for male carers

Postby Janette » Thu Oct 21, 2010 3:16 pm

Thanks for posting Simon. This section was set up in support of the partners going through Advanced BC with their loved one or those who have lost their partner. The hope was that partners could support one another and get some support from the forum in general as well.

As you can see your post is the first. For some reason men don't seem to be reaching out for the support or at least through the forum.

I hope this is the start of getting some support going for carers.
Janette


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Re: Support and information for male carers

Postby Gail » Thu Oct 21, 2010 1:17 pm

Well said Simon. Many of our advanced cancer ladies find there is a lack of support also, it is all geared toward early breast cancer. They may better be able to help with any information. There is the Otis foundation, for getting away, but that is designed for the whole family and or friends to go, not just the carers. It almost seems like it comes down to a grass roots level of someone starting up a get together of men and sourcing volunteers to attend to the wives needs. We often say that the husbands needs are not addressed when it is taking all the womens energy physically and physiologically just to get through the day.

I hope you get some answers :grouphug:
"You Gotta Laugh!"

Gail


Diagnosed April 2006,Lumpectomy,17 of 25 nodes positive, chemo, radiation. Finished treatment March 07
Diagnosed July 2012 cancer of mediastinal(nodes around lungs and heart)pelvis and spine. Up for the fight!

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Re: Support and information for male carers

Postby Crystalady » Thu Oct 21, 2010 1:08 pm

:clap: :clap: Simon I totally agree with you.

How you can make it happen I don't know but I'm sure we would all back you up any way we can. There are many marriages that collapse because of the stress involved and it shouldn't be that way.

I'm guessing that you would need to contact the Cancer Council. When I was first diagnosed my husband came with me to many of their sessions where the fears of the husbands showed up in many ways. Many had phantom symptoms of what their wives were going through.

Man is from Mars, women from Venus is so true here as well so it follows that you need support from other males as well just the way we hover over this site every day for support.

Good Luck

:grouphug: Sandra
First diagnosed in Dec 1998. Thyroid cancer 2006. Thought I was free and clear after 10 years but no, mets in spine in Dec 2008. Femara stopped working October 2010.Was on Aromasin and zometa. Now taking Xeloda and Zometa.Xeloda not working Dec 2011. Tamoxifen started. Feb 2012 Now on Abraxane.

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Support and information for male carers

Postby samouatt » Thu Oct 21, 2010 12:02 pm

12 months ago my life was well and truly turned upside down when my wife was diagnoses with Advanced Breast Cancer in a very rapid succession (1 month) from intial diagnosis (discovery of a lump and concern about her lymph nodes) to being informed that the cancer had spread to her liver and spine. Naturally my focus became supporting her and as a result I have experienced that experiential dread of feeling that my life was frozen and out of control (natural yes, enjoyable no). Since then I have come to realise that while my wife is ill I share the her trauma and quite frankly there is sod all out there for men who are carers. I even attended the Young Womens Breast Cancer Conference in Sep this year and the only session for carers was predominately dominated by women where the same condecending generalisations were trotted out. We even had to listen to women tell us (I think there were three or four males in the audience) what it is that we want in terms of support (all of which were way off the mark).

Righto so I don't like it, so I want to change it! Some of the things I'd like to achieve:
- Access to information on getting support as a carer
- Better help and guidance on how to help my wife through the effects of chemo (lets face it we are left to fly blind pretty much - you don't know what you don't know)
- Opportunities for male carers to get away and relax doing something enjoyable that is not related to our partners cancer with people who are going through the similar experiences - preferably with access to support so we know that our loved one is being taken care of.


Ok that's just a start but if we don't look after ourselves we can't look after those who we love and are in need.

Simon


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