Not All Cancer is Pink

I’m in an oncology ward.

You would think this would have occurred to me some time before five days but it really did take that long for me to figure out that everyone here is being treated for cancer.

About half the rooms have signs on the door reminding everyone that enters to clean their hands. A few have gloves and aprons that need to be worn by everyone, including the nursing staff.

There are trolleys in the hallway stocked with purple disposal containers and purple gloves and disposable coveralls. I remember these from chemotherapy. There is equipment for dealing with toxic spills and a room full of mobility aids.

The barrier nursing is not to protect us from getting cancer. It’s to protect people with compromised immune systems from catching anything from us. A head cold can kill you when you’re being treated with chemotherapy.

The ward seems to be about half full of women and half full of men. Some are old. Most are not.

One of the other women has the same surgeon as me. She cheerfully told me she was in the waiting room the day I found out I needed a mastectomy and rang my daughter using the receptionist’s phone to ask her to come home for the night. I can tell by the presence of Zonta pillows that there are at least two other women being treated for breast cancer.

While I’ve been here I’ve had to ask my husband to buy me some zip fronted jackets. I’m wearing track suits and don’t have enough tops to go with my bottoms. I usually pull something on over my head. That’s not a good idea at the moment.

Graham did a great job on his first ever solo expedition in search of women’s clothing. I was showing one of the nurses and commented that I really loved the fushia coloured one, more so because it wasn’t ‘breast cancer pink’. I’m a bit over it. When I let my hair stay it’s natural grey I added lots of pink to my wardrobe. It looks great with grey hair. Since my diagnosis it looks like I’m making some kind of statement when I wear it. I’m not. My friends know I have cancer. They don’t need a reminder and I’d prefer not to be the obvious cancer patient in the room.

The nurse commented that last year they decorated the ward and the cafeteria and the garden with so much pink it hurt the eyes. One of the patients said, “It’s great, but I have bowel cancer. Are you going to have a brown ribbon day?”

A few weeks ago I got a message from a man in the USA whose wife is one of the rare survivors of mesothelioma. He asked me to blog about his wife’s cancer. Here’s part of his email to me:

“I am reaching out to you today to ask for your help by participating in a campaign we are running to spread awareness about mesothelioma – a cancer caused only by asbestos exposure. Mesothelioma is an entirely preventable cancer and hopefully with your help, we can potentially save lives! Heather and I have been so lucky to meet some incredible bloggers who have helped us in our journey to spread awareness and I was wondering if you would be willing to do the same!”

I was touched to be asked. I don’t suppose this blog would reach more than about a hundred people. It’s mostly been a way for me to get things off my chest (just realised how funny THAT phrase has become!) and to share how I’m feeling with friends and family. I don’t imaging that warning people about asbestos related cancer through this forum will have very much of an impact. But I promised to do it anyway.

Cameron and Heather were hoping I’d be able to join their July campaign to spread the word. Suddenly my world got turned upside down and I was scheduled for a mastectomy. It’s now the 14th of August.

Breast cancer is the second leading cause of death for women in Australia. It deserves to be well funded, well resourced and well researched. I have great admiration for all of the pink charities and the wonderful people that run and support them.

But not all cancer is pink.

Cameron didn’t tell me how Heather contracted mesothelioma. She must have come into contact with asbestos fibres some time during her life. It could have been that she lived in a fibro house that hadn’t been well maintained, or maybe she played somewhere that building products had been dumped. I might be that she was unlucky enough to have picked it up from working in a building where the asbestos ceiling was slowly degrading or perhaps she was a victim of secondary contamination, handling clothing or equipment that had been in contact with asbestos. Frighteningly, she might have come into contact with worn or damaged asbestos while she was at school.

It would be very difficult to pin point Heather’s cause. Her contact might have happened thirty to sixty years prior to her diagnosis. It might have been misdiagnosed as a chest infection. It might have been ignored because it’s usually men that get this disease; they are four times more likely than women to be diagnosed.

Unless of course, Heather is a veteran. USA veterans are at the greatest risk of Mesothelioma. Cameron didn’t tell me why. It makes me sad to think of all those men and women sent off to war that are now being diagnosed with this usually deadly cancer. Most people diagnosed have only 10 months to live.

There are worse things than breast cancer.

Breast cancer is a good cancer to have. Okay, that’s not right. No cancer is ‘good to have’ but some have better survival rates than others. In Australia, breast cancers generally have an 86% survival rate and triple negative has a 75% survival rate. A lot of this is due to the outstanding work done by pink charities and the generosity of the people that support them. Some of this work has been of benefit to people with other kinds of cancer.

I recently got an email from one of the breast cancer research groups asking me if I’d like to participate in some research into the impact of early menopause on women with breast cancer. The one before that was about maintaining marital intimacy.

Really?

Not that both these topics aren’t important to me. They are, but I’m pretty sure when people donated, hosted morning tea, rode a bike, ran a marathon or walked ‘For A Cure’ this wasn’t what they had in mind.

To me there are three priorities when it comes to cancer; treating it, preventing it and curing it. That’s where the money should go.

These days we can use social media to network and support each other. Do we really need to fund a ‘support network’ or could we promote one through Facebook and redirect that money to research. Same goes for sending me a kit to help me on ‘My Journey’. How about an ebook instead?

I can understand why the McGrath family wanted to start a charity to support breast care nurses but it’s possible that this charity is simply allowing governments to avoid the cost of providing positions. I became aware recently that the local, part time breast care nurse at our local hospital, which services a population of 320,000, is likely to be ‘reassigned’ when the McGrath nurse is funded at the end of the year. So a person with nine years experience and a great love of her work will step aside and the government funding for her position will be used to fund something else. Who knows what happens in the future when/if the McGrath funding dries up.

Breast care nurses save money.They spend a lot of time on the phone to people, reassuring them that what they are going through is normal, answering questions and providing advice about other avenues for support. If they weren’t there, people would either suffer in silence and potentially undermine their recovery, or they would go and see a doctor. Both alternatives are expensive to the health system. These positions should be a priority for government funding. Not dependent upon a charity.

It’s daffodil day this week. I’m a long time supporter of the Cancer Council. Their slogan is ‘All Cancers, All The Time’. They also provide information, advocacy and networking. They also fund research.

If you were an Australian with mesothelioma this would probably be your first port of call. They would have information about the disease and would be able to put you in touch with any local support groups. They’d give you free phone counselling and advice about everything from managing your condition to handling your finances. If Cameron and Heather were here instead of in the USA they wouldn’t need to spend their very precious time asking bloggers to spread the word.

This daffodil day I’ll be wearing a daffodil for my Dad.

He died of bladder cancer at 58.

Maybe I should launch yellow ribbon day.

PS: If you need more information about mesothelioma here’s a couple of good websites:
http://www.mesothelioma.com/ A general site from the USA that includes some frightening information about Australia.
http://www.mesothelioma.com/veterans The USA veterans’ site.
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Mesothelioma An Australian site from the Victorian Government