Treatment, scans and a lack of advocacy for Stage IV cancer

June 18, 2020 No Comments

It’s treatment AND scan day today. So many friends have commented that it’s come round quick. And it has. It really has. They’ve also asked how I’m doing.

Full disclosure. I’m weary. And I’m not doing so well right now.

It’s hard enough navigating the world with a terminal disease, but a worldwide pandemic and everything that’s been happening of late has made it so much harder.

Everything is harder right now. So many people in our cancer world seem to be getting bad news, and we’re hearing about the deaths of our friends.

Cancerland said goodbye to another one of our friends at the weekend and I think every time it happens to someone you know, it hits us all quite hard.

It’s hard to explain to the healthy amongst you what it’s like to inhabit a world where death is so prevalent.

But it feels like, especially now, every time one of our stage IV friends dies it just means those of us still here need to shout a little bit louder about what we need to stay alive.

So I’m here on treatment and scan day to shout loudly.

STAGE IV NEEDS MORE.
31 people are dying every day from metastatic breast cancer alone.

We’re currently on day 170 of the year! Just add that up and think about it. It’s over 5,000 people, and hardly anyone cares.

We need quicker and wider access to new drugs, and we need more trials, we need more understanding of what stage IV means. But above all, we need a cure!

But those of us with incurable/metastatic/secondary/terminal cancer has been pretty much abandoned during this pandemic. Trials stopped. Some treatment stopped. Scans were stopped. And scarily, research has stopped – to the extent thatΒ @cr_ukΒ are sending me emails now to brag about the fact they’re no longer researching cancer, but staff are now working on COVID!

If one of the biggest cancer charities in the UK has given upon us, what actual hope is there?

I know I have no influence – I don’t have enough followers (not enough tits and TikTok to have followers!) to influence a lot of people. But I know that so many of you following me are advocates. And we need you!

I’m hoping that maybe someone with some influence, might see that we’re dying in huge numbers, and help!

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