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My Carry On Flight Essentials


My Cancer treatment

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.

📸: @binkynixon

Travel: My first experience of Glastonbury Festival's disability access

It’s been a hot MINUTE or two since I last went to Glastonbury festival. Too long really – my last visit was in 2015. But I figured it was about time to rectify that and decided that 2019 would be the year I went back. I was definitely pushed into the decision by the fact that I knew I’d be able to make use of the disabled facilities this year, as I’m now classed as disabled, and have the paperwork to prove it.

In my head what this meant would be camping facilities closer to the main festival – our regular campsite is up at darble, and quite frankly, may well be the other side of the planet when it’s 2am and you’re shattered and it’s a good hour walk back from Shangri-la. Access to the disabled toilets - important when you’re on the meds I’m on. And a mini bus service to get your things to the campsite – which when you face the sort of fatigue I do, sounds like a godsend.

But in reality, it was so, so many more things! Some little. Some big. All making for an easier festival experience for me and everyone around me.

So here are some of the highlights of staying in the accessible camping areas over a normal Glastonbury experience, if you’re thinking about applying for it.
You’re able to access the festival through a specific gate that’s at the disabled carpark – here you can collect your wristbands, for yourself and the people camping with you (you can have up to 3 others with you). There are a number of things you can apply for when you ask for your ticket, and as the ‘disabled’ person you get different wrist bands to the people with you. Mine were 2 blue wrist bands, one that showed I was the disabled person with the disabled loo code on it, and another that gave me access to the access routes, and if I’d asked for them, the viewing platforms. From here you can get the mini bus to the access campsite with all your stuff too!  
We arrived on the Thursday afternoon, which is the latest we’ve ever got there to set up tents, so I won’t lie I was a bit worried about where we’d be camping, and my fears weren’t alleviated when we arrived at the site with our stuff to be told we had to camp in a very specific location to allow for there to be pathways between the tents – which when you’re used to throwing your tent up in a group, wherever you like, feels a bit draconian. But give it a couple of hours, when you’re coming back to your tent in the dark, and those pathways are a godsend. No more tripping over guy ropes or the edges of tents. Also brilliant when you’re trying to get to the loos quickly!
Talking of the loos – there are loads in the camp site. And they’re pretty much always clean. I think we only found one messy loo the whole time we were there. And there are also showers in there – some that the people with the access bands can use, and some others for their friends. The showers had queues in the mornings, but I don’t think I waited for longer than 10 minutes for one. And they were individual cabins so it wasn’t the Shawshank style showers that I’ve experienced before at festivals (I’m looking at you Benicassim!) As it was so hot, I wonder if the showers were busier than they would have been, but it was so wonderful to have a cold shower after spending the day wandering about on the farm that was hotter than the surface of the sun!

There’s also a tent you can go to and get holistic therapies (although I think they fill up pretty quickly as they were full most days!), get hot water for teas and coffees, and very importantly – charge your phones or portable chargers up. There was also a water filling station, and a couple of sinks for washing up in.
Now, on to the other awesome things that staying in the access gives you;

I previously mentioned one of the wrist bands, if you’ve applied for it in advance, lets you into the access routes. These are pathways that run from the pyramid stage to the other stage, and then also to up by west holts, meaning you don’t have to battle the crowds between sets. But they’ve got bars and cafes back there. Nicer toilets, and pretty quiet water refill stations, plus loads of seating.

They make getting between the stages really easy – less of a battle through the hoards to get from one place to another. They gave me places to go and chill out when I needed a rest and kind of most importantly, they served extremely strong frozen margaritas, and a speedy iced cider! You can take one person through the access routes with you, and this is via a lanyard – so you can change who comes in with you!
And there are bus services that take you from the access camping to the far corners of the festival. One takes you out towards the park, and another takes you to the circus fields – which then has a cut through to get you to the late-night areas. We only got the bus down to the circus field area, but we got it a few times and it was so handy for me, just to conserve some energy on the really hot days! Plus the one that gets you over to the circus fields take you on a route past the actual Glastonbury farm buildings, which gives you a totally different view of the festival!

There were a couple of downsides to the access camping – you can only camp with 3 other people so our group – which was about 15 people strong – was split up. And it’s so close to the John Peel stage and some of the late night stages that you do get music pretty much all night. And because it’s for everyone, there are a lot of families, so there are children running about early on – which you don’t get in the normal camping really, as people with kids tend to go to the family camping fiends. But they are so easily ignore when you add up the benefits of being in there!
All these little things add up to make it such an easier experience for someone who suffers from fatigue, side effects from my treatment and doesn't have the stamina she use to! We'll be 100% applying for access camping next year - and fingers crossed we'll be taking a mobile home with us next year!

Happy Cancerversary to me. Or how my dog diagnosed me with cancer!

3 years ago today I was diagnosed with my primary breast cancer.
And do you know why I was diagnosed with breast cancer?
It wasn't me checking my boobs - there was no feeling anything on the first. No annual mammogram. No change in appearance.
No. What there was was this guy. Flash

I was diagnosed with breast cancer because this little beast here decided to use me as a climbing frame whilst trying to lick me to death one Saturday morning.

Whilst he was climbing up my body, he stood on my chest. Right between my boobs. Just where my underwire finished. And it hurt. It really hurt. Because there was a lump.

Initially, I put it down to the spoils of a physio session, they'd cracked my back too hard and had made my ribs move. That had to be what it was. (Yes, I am aware now that the body does not work in that way!)

It was just a really small, but really painful lump. One that once it'd been pointed out to me though I couldn't ignore. Mostly because it kept growing, and kept being painful! It sat right under my underwire, so every bra I wore irritated it. Every time I moved it would catch in some way or another. After the physio had confirmed it was nothing to do with him, I assumed 1. because it was painful, and because 99% of the things you read on the internet say a painful lump isn't cancerous, and 2. because I have a history with cysts - I assumed it was a cyst.

And eventually about a month later, after it had tripled in size, I finally went to the GP, assuming they would drain it and I'd go on my way. Right there and then, the GP told me was nothing to worry about because it was painful, but he'd refer me to the breast clinic. The normal referral path for anyone in the UK with a lump is 14 days, but somehow that GP put me a 12-week breast clinic referral. Luckily however my work has Bupa and my boss, probably annoyed by me fidgetting, told me to just go and get scanned at the local hospital........

I don't need to tell you that the lump turned out to be cancer, do I?

And so, 3 years ago today I sat in a room with a surgeon, and a wonderful nurse, a nurse who I still see every 3 weeks, and got the news we knew was coming but hope we'd not hear!

The news that changed our lives.

The news that brought about what I thought was the hardest year of my life, that included mamograms, biopsies, a lumpectomy, IVF, 6 rounds of chemo, 23 sessions of radiotherapy.........8 months of believing I was cancer-free, before being diagnosed again with my secondary cancer.

My metastatic cancer diagnosis was something that was a long time coming really. Maybe something I haven't really spoken about here. Not really. Maybe that is a more detailed post for a later time!

But there you go. A long post about how my dog diagnosed me with cancer!

Cancer: The Inherent Difference Between Primary and Secondary Cancer

A couple of weeks ago I saw a retweet from someone that read something along the lines of ‘people with metastatic cancer are lucky because they don’t have to spend the rest of their life worrying about their cancer coming back’. 

The retweeter was saying how true this was, and talking about their fear at every ache and pain. But reading it not only pissed me off, immeasurably, but it also seemed to point out a huge difference between people with a primary and secondary cancer. One I feel like I’m able to talk about, having been part of both the primary and secondary club.

So, I know that everyone with cancer, no matter what stage, is dealing with cancer, and that massively sucks. But I have to say, having had a primary, and knowing loads of people with primaries – the way you think and feel and behave once you’re living with an incurable cancer, is so far removed from the way you think and feel and behave with a primary cancer. And I think that this is massively overlooked by people with a primary cancer.

One of the inherent differences between a primary and a secondary is that with a primary cancer, your treatment comes to an end. There is a finish line that you cross. In some cases, there are bells rung to symbolize it. There are parties thrown. There are end of treatment holidays taken. There is talk of getting back to normal. Albeit a new normal. But there is talk of returning to your life. And even though the horrors of having cancer never leave you, and they change you, and stay with you. The side effects may take some time to leave you. And like the tweeter said, there may always be a small cloud, somewhere at the back of your thoughts that the cancer may return.

But, and here’s the big but – YOU ARE CANCER FREE. You get to live your life cancer free. And, as I was just about finding out when I got re-diagnosed – you get to decide if having had cancer defines you. (And that part there is the really tough part. Figuring out how having had cancer fits into your life. It’s not something that you get told about, you just have to try and figure it out yourself!)

Now living with incurable cancer is a different game. One that I hope no one with a primary has to find out about. But a totally different game.

For starters, no matter how much you try to put the thought out of your brain, you know that there is a disease in your body that is trying to kill you. All the time. And as the name suggests, it’s incurable. So whilst it might go to sleep, it might be classed as No Evidence of Active Disease (NEAD) it’s still there, just waiting inside your body to rear its ugly head and drag you down with it again!

And even if you’re NEAD, you are still going to be treated, to make sure that the cancer stays that way – so there’s no end to the treatment for you. Just varying lines of treatment that stretch out in to the future. Treatments you hope work for as long as possible and help you beat the 3-5 year average timeframe people with a metastatic breast cancer diagnosis get given!

And you know those side effects that I mentioned gradually get better once you finish your primary treatment, they linger. Maybe because treatment never finishes so the side effects never finish, or maybe because your cancerous growths are causing you pains, or maybe sometimes it’s just because the all-consuming mental weight of knowing that this is your life and no matter how well you feel you’re just essentially living scan to scan waiting for the news that its grown or spread gets too much.

I’ve still got some friends from my primary cancer days, and I’ve made a few new ones, but because of the huge gulf of a difference that comes with a secondary diagnosis I try not to surround myself too much with people who are having primary treatment. They are either too optimistic about their post cancer future, which I love to see, but feel bitter about. Or they are super melodramatic about their post cancer future, which I just get frustrated at! But I also totally understand this because I was pretty melodramatic about it too - it makes me cringe though, how melodramatic and, quite frankly, insensitive I was to anyone I knew at the time with an incurable cancer.........I was, and I'll admit it, a bit of a nob!

So sometimes it’s just easier to not get too close to people with a primary cancer. Especially incase you see them agreeing with the thought that those of us with a secondary are lucky because we don’t have to fear the return of our cancers.