Brave The Shave - NOT IN MY NAME

[TwitterQueen1]

I know IANBU but posting here for traffic.

I see Macmillan is now advertising BTS on tv. It doesn't seem to matter how many of us protest that the whole campaign:

• is extremely offensive and upsetting
• trivialises and minimises the effects of chemo
• claims that it makes people understand what it's like to have cancer

Would you paint black and bruises on your face to 'show support' for victims of DV?

Would you tie one leg behind your back and hop around town to 'show support' for those with disabilities?

• Do you know that Macmillan are asking those who've done BTS is "How are enjoying your new look?" or even worse - "Hope you're enjoying your new look!" WT actual Fuck. I mean, us cancer patients absolutely ADORE losing all our hair and feeling like total shit for months.... and random healthy strangers indulging in narcissistic, attention-grabbing stunts makes us feel even better.

And (in response to my complaint) these offensive statements apparently fall within Macmillan's social media guidelines'?

Bathe in baked beans, run marathons, walk a mile, hold coffee mornings.... do ANYTHING ELSE, but don't pretend for a second that shaving your head helps you understand how cancer patients feel. You have absolutely no idea at all. None.

I don't know, I never thought of it like that. In Australia we have Shave for a Cure and Brave the shave, it has never been a consideration that it could be insulting. In fact, all the major cancer organisations endorse it. This is the first time I have ever, ever seen a person who has had cancer be against this. For women with long hair, they chop a ponytail off and that bundle of hair is used to make wigs for women and children who are bald through cancer. So it achieves 2 things. Money raised, and wigs using real hair are used and donated to people who want them.

When my dh's grandad died from cancer, I found the 'kick cancer's ass' adverts upsetting because they implied that people who die just don't fight hard enough. I know that probably sounds ridiculous but it isn't something you can beat by being tough and brave

Not ridiculous at all. That language is so unhelpful and I thought there was more understanding of that now. Obviously not though.

The whole 'journey/battle' has entered the vernacular though, and its very hard to describe what happened without using it as a form of shorthand in press releases etc. I HATE using it, but when you are writing for the press, it's a way of describing, and you need to get your message across in a succinct way. I try never to use it, because it is so insulting to those who die, like if only they'd been a little bit braver it would have made the difference. absolute fucking bollocks.

I hate 'journey' too but admit to using it sometimes. It's difficult to find an appropriate term. Maybe 'treadmill' is more accurate. It certainly feels like one - bloods, chemo, bloods chemo etc.

I like treadmill! Let’s try to get that used!

As a pp has mentioned this campaign has also upset a lot of people with alopecia. Usually you sponsor someone for doing something brave or arduous and so there's a hint of being shaven headed as being undesirable. I assume the point is to be sponsored as I have no idea how doing it raises awareness.

On a side note I'm growing mine for the Little Princess Trust, an inch or so to go as they can't guarantee there will be enough for a wig if you donate less than 11 or 12". They also have rules about how much grey and what colouring (if any) is acceptable.

Treadmill it is! I'm with you on that!

I hate the whole battle cancer shit, when my lovely FIL got his diagnosis people said to him about fighting and battling, except his cancer has a 0% survival rate, there was no fighting to be done, just to get as long as we could to say goodbye. We got 6 months

im shit at starting petitions online im not a very techy person but i will happly support and sign one and you all have my support whatever you decide.

Treadmill!! - Yes! my dad said he just 'kept plodding on'

Helena I'll have a look and see what options are available re petitions / complaints etc, but from experience, Macmillan is very anti any expressions of upset about the campaign. And one of the HCPs upthread said her concerns fell on deaf ears too. They just don't care - the clink of coins is far more important...

@LokiBear

Don’t google!

The prognosis for a number of blood cancers has been transformed for the better in recent years, but there is a lot of the older (and much scarier) info still out there on line. Fingers crossed for you that your DDad has one of the treatable versions

(PS: you don’t necessarily lose your hair with blood cancer treatments)

My aunt had chemo and had no problem with my niece doing a BTS type of thing. But I genuinely believe that's because it was a family member and she knew it was coming from the heart (and I believe niece did it to raise money for cancer research or something).

Thanks, ivampire. Really appreciate your comment. I shall do my best to stay away from Google!

My DH had a blood cancer and definitely lost all his hair as he had the very high dose chemo as part of an allogenic stem cell transplant.

Yes, if you require a stem cell transplant, there will be very aggressive chemo. But not all blood cancers require transplant.

Some have other chemo regimes (varying levels of hostility and maybe hairloss for some, not for others). And some are treated with newer drugs such as TKI inhibitors which do not cause hairloss. Some people go into watchful wait, with no immediate treatment at all (quite how they cope psychologically, knowing you have cancer but not having it treated, is beyond me).

I had non-hairloss chemo, and am currently stable on a TKI inhibitor.

Weve been warned that, depending on the results, he might go onto a 'watchful wait' programme. I feel like once it has a name I can feel better. That probably sounds stupid, but not knowing is horrible. Im scared he might refuse treatment. I know that is his right, but he is my dad. He is frightened of chemo so im keeping everything crossed that there is another option.

Unfortunately my DH was very ill, totally transfusion dependent with all myeloid blood lines affected, so he had little choice but to go straight to SCT. There's no other treatment at all for his particular (rare) condition.

Glad you are stable iVampire...here's to that situation continuing for a VERY long time. Wishing you the very best.

Excellent thread TQ. Thank you for voicing the way that so many people with cancer feel. This comes up often on a cancer support Facebook group I'm in as so many people dislike it. Some have contacted Macmillan about it and been fobbed off.

I don't really understand the solidarity thing, except maybe with children/teens. I wouldn't want any of my family or friends to go bald just because I had to. It's shit. It's so, so cold without hair, especially at night in winter! And it looks a bit rubbish on most people. I'd rather they didn't go through that unnecessarily. They show their support in much more practical ways.

There is no link between this campaign and donating hair for wigs. That's something that some people decide to do as well, but it's not officially part of "Brave the Shave".

I'm not keen on Macmillan for various reasons. Not least their training seems to be pretty shit. My supposedly cancer specialist nurse with a big green Macmillan badge suggested I apply for a part time apprenticeship during my ongoing chemotherapy and that "after treatment finishes" I'd be able to change to full time. I have stage IV cancer. "After treatment finishes" I will be dead

I don't begrudge charity employees a decent salary (comparable to same job in other sectors) and facilities though. I've been to CLIC Sargent HQ and it's just a normal office with lots of CLIC Sargent branding. Should they have to work in a draughty portakabin just because they work for a charity?! And they still have the same expenses as people who work for other organisations.

Also whoever mentioned chemotherapy drugs for children, the drugs are targeted to the cancer not the age of the patient. Actually children can often withstand much higher doses of the same drugs than adults. It's hideous that any child should have to go through cancer treatment. But as they do, they should have the most effective drugs available.

TQ I suppose we actual cancer patients end up costing them money rather than making it so they're not that fussed about what we think

A friend has actually shared this thread on Facebook. I didn't know she was on here

"My supposedly cancer specialist nurse with a big green Macmillan badge suggested I apply for a part time apprenticeship during my ongoing chemotherapy and that "after treatment finishes" I'd be able to change to full time. I have stage IV cancer. "After treatment finishes" I will be dead"

i bet i can guess where her political affiliations lie

I must ask DS1 how he feels about this if he ever answers my email.

I’m an “adopted Macmillan professional” and I think the campaign is awful. I also hate the whole fight cancer. You don’t fight it, it fights you.

Oh no Helena she's really lovely, just clueless about cancer I was saying I was disappointed I had never got to use my degree, so she was trying to help. I didn't really know what to say as I was too embarrassed to correct her that my cancer is incurable!

It’s such a personal thing isn’t it that varies from person to person. When my husband had cancer, he would’ve found BTS absolutely appalling. He didn’t even like anyone mentioning the word cancer, he just wanted to deal with it and get over it, which thankfully he did!

My best friend had cancer at 24, and she was embarrassed about how she looked when she lost her hair (she had amazing flame red hair down to her elbows) that she refused to leave her house. After 5 weeks our group of friends all shaved their heads (donate all of their hair to a wig company for sick children). It was the first time she left the house because she felt so supported. There were no Facebook announcements or attention seeking though, just done on a whim in my mums bathroom! She sadly passed 9 months later.

I didn’t shave my head because I have alopecia and I had only just grown it back