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My Cancer treatment

The Hierarchy of a Cancer Patient

Well, this might be a little controversial, but I don’t think I’m going to be saying anything that isn’t true. It’s something I have and still experience regularly in the cancer world - especially when dealing with the press and national brands 

It seems that there is a check list that gets run through when they are looking for people to feature. 

I assume this is so the myth of what a cancer patient looks like can be carried on, but I can't totally say......

So lets take a look at the hierarchy of the cancer world as seen through the press calls I received l for BCAM. 

First, lets start with the type of cancer you have.

Obviously, during BCAM you hear the story over and over again, that having breast cancer means it's the ‘good’ cancer. You know, the one they can do lots for. I heard a lot about the ‘good cancer’ when I was first diagnosed. Because everyone knows breast cancer is the best one to get. It’s the one you don’t die from, right? It’s the one they can cure. Sure it is!

And then when I got my metastatic diagnosis I heard something similar – ‘at least it’s only in your bones’. Yup. At least the cancer I have, that has spread and is now incurable is only in one of the places that it can go to kill me. Yup, still super lucky

And do not get me started on the people with or after a primary cancer who have told me that ‘at least I don’t have to live with the fear of my cancer coming back’. Because living in fear of your cancer returning – which, granted I only had 8 months of, is worse than living with the knowledge it has and is trying to kill you!!

Then there’s the issue of your hair.

Now, any self-respecting cancer patient will know that unless your hair fell out during chemo, you didn’t really ‘suffer’. 

Or that’s what is portrayed to us in the media. I know I've never had to brave the shave so I don't quite know what it's like to be bald. But take a minute to recognise that those of us who cold capped suffered just as much. We had to sit with that ice pack on our head  AND then we've had to deal with the crappy regrowth afterwards. So far I have had 2 full blown party in the back mullets in my lifetime, and neither were given to me by Toni and Guy in the 2000's.

And don't get me started on the drugs that don't make you lose your hair that so many of my friends are on. How do they equate in the "bald is beautiful" world that has been created?

But so many of the emails asked for a photo of you with no hair..........

And, if it's breast cancer - your boobs

It seems the like the best way to make people aware about breast cancer is to ask you to get your tits out. Because it's a tricky situation, figuring out which bit of the body breast cancer affects. Or so it would seem that the national press thinks, given the amount of emails that go out asking for people who are willing to supply a page 3 style shot. 

Which leads me to believe if you get your tits out, you definitely rank further up the hierarchy when looking to get your story out there. Especially if there are scars to get out too.

I wonder when bowel cancer, or lung cancer, or brain cancer patients will be asked to get their affected areas out?

A London-centric address

Yes, we all know that nothing happens outside of London, and if you can't get to London by 4pm tomorrow for the photoshoot, you're no use to anyone! 

And now, lets chat about a legacy........

Yup, there is nothing the press like more than to talk about how sad it is that someone with cancer has children. As if it those of us without children don't quite make the grade on their sadness scale. Lets ignore the infertility we're facing. lets ignore the fact that we have full lives without children. Lets ignore that our cancer is still affecting those around us to a crazy degree. 

So, yes, I know, this isn't ALWAYS the norm in the press, but if you'd have seen some of the emails I've had over the last few years, you'd be amazed or horrified. One, last year, by a major international fashion designer sent out a casting call for people with 1. A mastectomy. 2. A bald head. 3. Visible scars.......... which all just perpetuates the myth around what a real cancer patient looks like - right? 

But all this explains why, of all the press opportunities I've received of late, I've only taken part in one of them!

Metastatic Breast Cancer Day Posts

Today is Metastatic breast cancer awareness Day. I've posted quite extensively about metastatic breast cancer on instagram today, so I thought it might be worth posting them all here, in case anyone stumbles here and would like the info too! 

I'm going to be sharing some facts about MBC with you to try and help spread awareness, to spread knowledge of it and to do what I'm always trying to do with this account - let you in on what life with MBC is really like - especially to those of you that have had a primary diagnosis and think a secondary is a terrifying prospect.
YOU might have heard some of these things before, I might sound like a broken record, and for that I'm sorry. But if I reach, and educate, just one more person (which, let's face, it given instas current record for showing my posts, would be a miracle) then I've done my job here today.⠀⠀⠀⠀⠀⠀⠀⠀⠀
A bit about me and my incurable cancer diagnosis.⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀

My name is Emma. I'm 38 years old. I've been living with cancer now, in one way or another, for over 3 years now.⠀⠀⠀⠀⠀⠀⠀⠀⠀

My primary diagnosis (DX) was in August 2016 after my dog, Flash found a lump. My secondary DX, telling me that my cancer had spread to my sternum bone and a variety of lymph nodes throughout the top half of my body, came 8 months after finishing treatment in early 2018.⠀⠀⠀⠀⠀⠀⠀⠀⠀

So far, to date, my cancer treatment has consisted of a lumpectomy, 2 rounds of IVF, 12 sessions of chemotherapy (2 different types), 23 sessions of radiotherapy, 8 months of daily tamoxifen, 18months of herceptin and perjeta every 3 weeks, 18 months of Zoladex and denusomab injections, 18 months of daily letraxole tablets, daily antidepressants and tablets to help my heart function, numerous scans, and far too many appointments with oncologist, surgeons, my oncology nurses, and GPs to count.⠀⠀⠀⠀⠀⠀⠀⠀⠀

But I try not to let all this define me. I'm trying to live as normal and as full a life as possible! And show people that metastatic cancer may mean treatment for life but it's not a life sentence!

But what is a metastatic cancer? And would you believe it if I told you every woman in this photo had it?

There are many names for this type of cancer - secondary / stage IV / metastatic / terminal (only if you're trying to win an argument though!) They all mean the same thing........⠀⠀⠀⠀⠀⠀⠀⠀⠀

A secondary cancer is when a cancer spreads, metatasizes, from the original location to somewhere else in the body. Once it has spread it is no longer "curable" and, whilst it might become dormant in a person's body (NEAD - No evidence of active disease) it will always be there and someone with MBC will be in treatment for it for the rest of their life!⠀⠀⠀⠀⠀⠀⠀⠀⠀

In my case, my cancer went from my breast to my bones, But breast cancer tends to like spreading to the bones, the lungs, liver and the brain. ⠀⠀⠀⠀⠀⠀⠀⠀⠀

How do you get stage IV breast cancer?⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Simple answer - 30% of people with a primary cancer will go on to get a secondary cancer. If you have a primary cancer diagnosis, this isn't a fun fact to be faced with, I know. But it's unfortunately, true. And more needs to be done to educate people about the signs of a reoccurrance.⠀⠀⠀⠀⠀⠀⠀⠀⠀
About 8% of MBC cases are diagnosed 'de-novo' which means they are diagnosed as having incurable cancer right from the start.⠀⠀⠀⠀⠀⠀⠀⠀⠀
Once someone has been diagnosed with a metastasis, treatment is no longer about "curing" the disease, but managing the cancer and preventing it from spreading.⠀⠀⠀⠀⠀⠀⠀⠀⠀

Some hard facts about MBC......⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • About HALF A MILLION people, women and men, die worldwide from MBC every year.⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • 31 women in the UK die every day of MBC. Men who die from it aren't, for some reason, counted in the UK!⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • MBC is the biggest killer of women under 50. 16% of the people that die from it are under 50.⠀⠀⠀⠀⠀
  • This mortality rate hasn't really changed in 20years despite huge medical advances.
  • The average life of someone after they are diagnosed with incurable cancer in 3-5 years⠀⠀⠀⠀⠀⠀⠀⠀
  • Only about 7-12% of funds raised by the big cancer charities goes to finding a cure for metastatic cancer.
NONE OF THIS IS OK. We deserve more!⠀⠀⠀⠀⠀

What do people with MBC need?⠀⠀⠀⠀⠀⠀⠀⠀⠀
I'm going to paraphrase from the awesome campaign #MetupUK are running at the moment.......⠀⠀⠀⠀⠀⠀⠀
What we need is;⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • Greater Awareness of the disease.
  • A wider understanding of the symptoms and signs of a spread.
  • More access to drugs that can extend our lives.
  • Policy change from NICE. (Our lives are worth more than the £30k limit they put on them).
  • Accountability from the charities, drug companies and NICE. 

With the right treatment we can all be living longer than the averages we're give. We all want to be alive. We just need help in getting the message across to the people who can change policies.⠀⠀⠀⠀⠀⠀⠀⠀⠀
If you want to know more, please visit⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀

I'm going to close off my MBC day posts by letting you in on some the things I've done this last 18 months despite having incurable cancer;⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • sailed some (but not enough!)⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • stood on a stage and talked about life with MBC⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • visited Copenhagen⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • visited Berlin⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • visited Milan (twice) for MBC conferences⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • holidayed in Bordeaux⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • survived Glastonbury⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • been to 11 beer festivals⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • been bridesmaid to one of my besties⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • eaten at a 3 Michelin star restaurant⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • spent awesome times with friends⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • cuddled my dogs at every opportunity I can⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • made some beautiful jewellery⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • visited Washington DC with work⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • decorated a kitchen⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • beaten Jim at minigolf⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • made my own gin⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • joined a MBC campaigning group⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • seen the spice girls⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • starred in about 359 photobooth pictures⠀⠀⠀⠀⠀⠀⠀⠀⠀
  • made some incredible friends who are also #busylivingwithmets! ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
I'm sure there's a lot I've forgotten, but I hope, as always, in sharing my life with incurable cancer is to make it seems less terrifying prospect, and something to be feared a little less.⠀⠀⠀⠀⠀⠀⠀⠀⠀
Thank you for being here today for these posts, and for supporting me on days that aren't all about cancer too!

And if you'd like to watch the live I did, answering some of your questions about life with MBC - it's here;


Happy 1st of Pinktober

I'm sure by now you know that October is breast cancer awareness month. It's the time to paint everything pink. If the adverts are to believed you should be wearing silly pink wigs, t-shirts, feather bowers......Pink this. Pink that. Pink everything. All to beat breast cancer.

But this doesn't sit right for me...... because, for 1. My cancer isn't pink, or fluffy, or cute. And we shouldn't trivialise it as such.

And maybe more importantly, 2. We need to know more about where all this pink money actually goes?

Don't be afraid to ask how much of your hard earned cash you spend on the pink actually goes to helping and supporting people with breast cancer? To finding a cure? To giving those of us with metastatic breast cancer a better, longer, life?

Because I'm going to bet, it's very little. And right now, with median life expectancies of someone with mbc being 3-5 years, we need more money for research. Not more pink or more awareness. (Apparently, currently, only 7-12% goes to metastatic breast cancer research, which is definitely not enough!) So, please, #thinkbeforeyoupink.

And if in doubt, leave the pink on the shelves and donate directly to a smaller charity who are directly helping people......maybe Make Seconds Count, or CoppaFeel! or Trekstock

Or find your local cancer centre and donate to them. If you're in Sheffield, I'd recommend Weston Park or Cavendish Cancer Care.

πŸ“Έ: @binkynixon