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'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 Fucking hell

Also hate the "fighting" talk. The most annoying one I've seen is "cancer picked a fight with the wrong woman". It really pisses me off when people share that sort of thing, when they know they have friends who have died or will die from their cancer. The implication seems to be that the ones who don't "win" are weak or somehow inferior.

cancer picked a fight with the wrong woman

Oh Jesus really? I’ve never heard that and I think I might scream if I do!

Completely agree with the above Leslie

However, we have had a wonderful service from Macmillan. I don't think I would have got through my DH's cancer (so far) without their support (and the free counselling I have received). They've been pretty much the only consistent support we have received.

Having said that, I have challenged them (on FB) about the BTS campaign and only got stock, bland responses.

Oh yes, Namechange though I misremembered the wording. It's usually "girl" or "diva" or "chick", or even "bitch"

Hi Fuzzy I'm glad they've helped you :) I think it just depends, like most services, on the individual people you meet. My nurse is really wonderful. I just don't know how she could have qualified as a Macmillan nurse without any understanding of metastatic cancer

To be fair to her I have stage IV cancer and they are definitely planning on curing me. They aren’t promising to obviously but they are currently positive. More positive than I am obviously!
You’ve obviously got different presentation and she should have read your file properly, but it’s not necessarily that she doesn’t understand the metastatic bit as much as she hadn’t prepared for your appointment properly.

And no Macmillan involvement for me at all. I wonder if it varies between areas.

Several of my “obviously”s can be deleted. So tired and brain already switched off.

Also (last post from me) WhatWouldLeslie everytime I see you posting I get massive username envy!

Ah yes I know stage IV isn't always incurable. But it was very obvious from the discussion in this appointment that mine is (she was sitting in on an appointment with the oncologist).

Now all the cancer nurse specialists at my hospital have Macmillan badges so I expect they just went on a course. I don't think they're paid by Macmillan or anything. And they worked there before, just without the badges.

All the best with your treatment and hopefully a cure

YANBU I found the ad very distasteful, raising money has become an industry, and often, I don't find it an ethical one - they way it's framed.

Oh sorry, I am sure you know way more about this than you want to, it was just a bit ambiguous and I know I read all these threads obsessively after diagnosis and before having my treatment plan, and I had it in my head that stage IV was hopeless and all that. One year on I’m a bit more blah about it all- or maybe that’s tiredness!

A cure would be amazing but I’d also be pretty delighted with managed remission or whatever they call it. And I’m living as I want to at the moment and that is something.

She was sat next to your oncologist and she still didn’t understand? I’m all out of justification attempts! Seriously that makes zero sense!

for you too and if you feel like it!

Oh and maybe MacMillan just paid for a ton of badges! Good branding I guess, other than when attached to less well informed nurses

Fuzzy thanks for your kind words!

I thought I’d posted just after my last, to say that I hoped you hadn’t found it too snippy. The intention wasn’t to contradict you (so sorry if I sounded combative, i’d just meant to give Loki some of idea of the range of haem treatments. And of course the ‘waiting to find out exactly what it is and what they propose to do about it’ bit is a very stressful time,

I’ve not had much to do with Macmillan, other than picking up a lot of their bumf (some of it very good) and booking a LGFB session through their office.

My unit has two Macmillan badged nurses (no idea who actually pays them, though, so I see them more as NHS, IYSWIM). One specialises in leukaemia patients, other lymphoma, and they are readily available by phone and email - no question too small or too silly - and i’ve found that really useful.

Leslie it was seeing the tv ad that tipped me over the edge. . I've ranted on FB to no effect, as you know, but the ad was just another step too far. Also waving to your vegan cake-loving friend with thanks for sharing on FB. I hope she/he doesn't get any crap for it.

I haven't seen the ad so I'll keep an eye out TQ :) maybe Macmillan will see the thread and take note (yeah, right...)

Sorry Namechange I should've been more careful hopefully anyone newly diagnosed will read your post for balance. I'm glad you're able to live well. That's what matters most, at the end of the day. In my opinion, anyway. I'll have some thank you as long as it's not vegan. Do have some yourself too!

Leslie I agree with a lot of what you say, but need to raise this point:

Also whoever mentioned chemotherapy drugs for children, the drugs are targeted to the cancer not the age of the patient.

This is definitely NOT the case with glioblastoma, where adult treatments are available the day of your 18th birthday and not before, no matter what size the patient (ie you could be a 15stone rugby player aged 17 yrs 11 months) and not able to access the same meds as an 8 stone ballet dancer aged 18 years and 1 day).

Sorry Namechange I should've been more careful blush hopefully anyone newly diagnosed will read your post for balance sorry, now I feel like I have dumped all the worries of the newly diagnosed on your doorstep! I think I was posting without thinking (or rather without removing any of my projections from last Summer’s mental “research”athol). I have since stopped reading anything on line that actually relates to my cancer and I am a million times better.

Is it bad that there are cancer treatments I receive that fill me with less horror than vegan cake

NotUmbongo

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

Not funny really, but this did make me laugh! Alopecia must be even worse though - you don't know what's causing it (aside from stress) and you don't know when/if it's going to come back.....

Alopecia areata can be successfully treated by steroid injections into the scalp. Hair grows back the same colour as well. I don’t know if the treatment is available on the NHS, if it’s not, it should be.

Ah sorry yolo my wording wasn't very clear. I meant there isn't a need to develop chemotherapy drugs specifically for children where they can have the same ones as adults. I'm still not doing a very good job of wording it, but hopefully you get what I mean now :)

I don't know very much about glioblastoma so I can't comment on those specific treatments. Obviously in those circumstances suitable child-friendly treatments are needed.

Namechange I think the same about some of the dreadful smoothies people drink. Bleurgh. I'd rather have my chemo!

@Namechangeforthiscancershit I'm newish diagnosed as well. Had my first chemo last Tuesday and I've banned everyone from reading on t'internet! I learnt most things are out of date anyway.
Although I'm also a naughty patient as I am fasting and having acupuncture as they make me feel good!
Ps I was really lucky yesterday and went shopping and one thing I wouldn't have thought about before diagnosis is personal space. Ie I'm always worried about someone bumping into my picc line arm! Maybe this is something that Macmillan and other charities can raise awareness about?

Another one here with nothing nice to say about Macmillan generally, let alone this appalling campaign.

Re the Macmillan badged nurses - Macmillan does this through "prime pumping". Basically they fund a post for the first 3 years or so on the agreement that the NHS will then pick the tab up. So you could have an NHS nurse get a "new" Macmillan post then keep the title and be back in the payment of the NHS after 3 years.

More recently Macmillan have moved onto prime pumping clinics/bricks and mortar. So you will see things like "Macmillan chemotherapy suite" etc. They will part fund and the NHS/private partnership will pick up funding at a later date.....but Macmillan keep the advertising and the money keeps rolling in.......

I don’t think it’s an awful campaign. I do think Macmillan are a terrible, awful charity though and will never donate to them.
My friend did BTS but because she wanted to donate her hair to princess wigs who make wigs for children. She did it as BTS because she could also raise money for charity at the same time as donate her hair and that for her was her drive.
I wouldn’t donate to Macmillan ever, so I didn’t donate but she did raise a lot of money.