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My Cancer treatment

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!
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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!
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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. 
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Review: PitPat Pet Activity Monitors

Ad - we were given these in return for a review but all words are our own

Last month we were sent a couple of PitPat Dog Activity Monitors to try out, obviously on the dogs, not ourselves……..They arrived the day we flew to Copenhagen, so we didn’t get to try them right away, but we’ve had 3 weeks of trialing them now, so I wanted to let you know how we’ve been getting on with them!
 

 

So, off the bat, I should tell you, in case you aren’t aware of our feral little beasts – their names are Grandmaster Flash, and Grandmaster Melle Mel – Flash and Melle, they are 7 and 3.5 respectively, and they are Jack Russel x Pug crosses - which means they are kind of small dogs. About 10kgs each (depending on how much they’ve eaten lately), so I was a bit worried that the PitPat’s, although they are only 5cmx5cm, might look really big on their collars, or be quite heavy for them, but, as you can see from the photos, they fit really nicely, and save from a few times they scratched at them when they first went on, they pretty much ignore them now, which is good.



We’ve now been using the PitPat Monitors for the last few weeks. There have been hikes round the reservoirs, there have been walks through the woods, we’ve scrambled through streams, Melle has swum (yes, it is waterproof), Flash has chased balls, they have played with other dogs, they have played with people. The dogs have well and truly put their trackers through their paces!
And we love them.

It is so so much fun checking their data at the end of the day. And interesting. Because pretty much every day it tells me that Flash has done more running than Melle, which is crazy because Flash, in my eyes, is super lazy – but it tells me he does more running, which might make sense because he dithers so much then has to sprint to catch up with us. Whereas Melle, he’s just constantly on the go on a walk, noodling about, always on the go - but maybe not running.
 

And in the house Flash will relentlessly chase the ball if he’s given the chance, where as Melle will happily cuddle you all day, but Melle will get up and wander round the house with you every time you move, even if you try and explain you're just getting up to grab a drink, but Flash, once he's settled, it'll take a lot to get Flash off his napping position on the sofa!
 
I knew this about them, obviously, but It really is fun, at the end of the day, checking their activity and sometimes seeing how it matches against what I’ve been doing. Because I swear there are days I've walked further than them, just down to the times I've had to go back to them and figure out what on earth they are up to!
So, now I've told you about how we use them, and the things we've found out from them. I'll show you the actual app, because it's so easy to use. Obviously we have 2 dogs, so our app interface has 2 dogs set up on it that we can toggle between. But each dog has their own dashboard, which we can look down and see their activity over time. And then, you can delve a bit deeper into the actual stats from a specific day.
Here you can see how their activity can vary, especially on a day, like the one at the top, when my mum has spent the day indulging Flash's ball obsession!
 
 
 


This last shot shows the badges you can 'win' for hitting your daily activity quota, and also the screen that you hit when you want to download the data. It's super simple to grab the data - you just click the fetch data button on the app, and push the paw on the tracker and it downloads! It is all done through Bluetooth, so I try to only download it once a day, and usually when I've taken their collars off for the day.



So, what do you think? Is a Pitpat the sort of thing you'd like for your dog? Because I'm currently raving about them to all the dog walkers we meet on our adventures!



(I should also say that the dogs don’t tend to wear their collars in the house until we go on a walk, unless they are at my parents, so sometimes the data is just based on our walks, but sometimes it’s a full days’ worth of info.)
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Cancer: Lets talk about hair baby........

Can we take a minute to chat about the mess that is my hair. Again.



In the week that I've finally got to the point post chemo where I can use a proper dye on my hair, I'm still dealing with a lot of the side effects of having had treatment that makes your hair fall out!


So, yes, I know I was lucky* enough to be able to cold cap and not lose all my hair during either of my chemo cycles. But for the second time in less than 18 months I'm having to deal with the fall out of losing 60% of my hair and having it grow back again.

Seriously, what on earth am I meant to do with it? It's like there's a two inch fringe growing all over my head. Again.

It sticks up between my old hair on the top of my crown, stands out sideways around my ears, creates a shelf along the back of my head! Basically, if I cropped there a mullet growing that any Toni and Guy stylist in the early 2000's would have been proud of!

This time last year I'd just about got to the point where I could see an end to having to hide my weird short regrowth when I went back into chemo in May, and now I'm at an awkward stage where it's not long enough to hide with any style! All over again. I can get away with a beanie or cap on a dog walk, or if I'm out and about somewher chilled, but there's no making it look nice any more!

I wore head scarves last time I was growing it back out (it was more summery) but people told me I looked like I had cancer and that made me self conscious, plus, real cancer patients, the ones who lost their hair, look at you a bit funny when you rock up in one! Like you're not really supposed to be joining their gang. (I think I've mentioned it before, but online, it feels like there's a definite hierarchy when it comes to cancer worthiness. People who have lost their hair definitely score higher than people who didn't. Maybe I'll do a post all about the hierarchy of cancer one day. If I'm feeling brave! And don't get me started on the amount of people who've been pregnant who have told me that their hair also fell out, like it's the same thing!)

But I'm kind of in a really crappy hair place right now, and I know I've probably got another 6 months of growth before the short hair gets to a length where it'll start to actually blend in with the rest, (it's definitely growing slower this time round so maybe it'll take longer!) And then maybe another year after that before it's an actual style. Until then I'm trying to deal with the fact I've had one usable hair style (half up, half down) for the last 18months, and if it's not this style, it's currently hidden beneath a cap. That's not much choice is it?

So I'm getting impatient. I want nice hair now. I want to be able to properly style it. Grow it out of this bob. Have a messy bun. And beachy waves. And a balayage. Basically, I'd take anything right now that didn't look like I was cultivating a mullet.

I'm also kind of bored by people with decent hair telling me to be grateful forwhat I have, because I bet if it was them they wouldn't be happy about it either!

In short, I miss this old hair. I miss my long hair. In truth, I miss the me that had this hair!

*You know you're living a fucked up life when your idea of lucky is only losing 60% of your hair, twice, to chemotherapy. But yes. I know. There's always someone else worse off. And I can't complain. But let's face it I worked bloody hard to not lose my hair and having hair doesn't mean I didn't suffer side effects as much as someone who went down the #baldisbeautiful route! No matter what the internet thinks!

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Beer: Sheffield Beer Week at The Stag with Burning Sky Beer

On Sunday night Jim and I were invited to the closing event of Sheffield Beer Week, a beer and food pairing at The Stags Head, with Burning Sky Brewery. And as we both love food and beer, and have a soft spot for Burning Sky, there was no way we were going to turn it down!
The night started with a welcome drink of a cask Plateau, and a chance to catch up with friends who were also there with us! Cask wouldn't be my first choice of a beer, it's always too flat for me - but this was really tasty and a really nice start to the night's drinking.

Then the eating began!

Starter: Mushrooms on Toast - Wild foraged mushrooms sautéed in garlic butter and cream, toasted brioche, a sprig of fresh thyme and topped with a crispy panko quail egg. Paired with: Cuvée 2016
Seafood: Steamed mussels in a white wine velouté sauce, buttered shallots and pan-fried pancetta. Paired with: Arise
So, course 1 and 2 were made up of some of my absolute favourite things. Mushrooms on toast is one of my favourite meals for when I'm feeding myself if Jims out, but I'll be honest, they aren't this fancy or tasty! And Moules are my go-to meal whenever I'm in our favourite restaurants in Cornwall, although, to be fair, I'm even a fan of the supermarket packets. This had some awesomely crispy pancetta in it. My only issue with it was there was no more bread to soak up the sauce!

The Cuvée 2016 was absolutely delicious. It's Burning Sky's "Saison à la Provision from Foudre no. 1 and from a number of Chardonnay barriques, we then blended in a large portion of Lambic, imported from Belgium that has been ageing at Burning Sky."

We've got a bottle of their most recent release of the Cuvee in our bottle stash that we picked up at Indy Man so I hope that bottle is just as nice!

The Arise that came with the mussels was made as an easy drinking, after work tipple, and whilst it might not be something I'd order over and over in a bar, but it was perfect with the moules because it didn't overpower the flavours of the sauce!
Sorbet: Cuvée sorbet

Our next course was a sorbet made from the cuvée - which was way more flavourful than I thought a beer sorbet could be. 

And then we moved on to a meat course; 

Meat: Lamb rump glazed with rosemary and thyme butter, creamy dauphinoise potatoes, seasonal vegetables and a red wine jus. Paired with: Saison de fête
Both the lamb and the potatoes were amazing. The herb crust on the lamb was so good, but our tables only complaint was that the lamb was a little cold. Delicious, but it could have done with being a little warmer! I'm such a fan of a sour beer so this saison de fête was right up my street. A perfect level of sourness! 

Dessert: Warm spiced ginger and treacle tart with clotted cream topped with candied almonds and lemon zest. Paired with: Saison de Pêche
And then, just as I thought I was too full to eat anything else this treacle tart showed up accompanied by a peach Saison, and suddenly, there was room for more! It was so perfectly sweet and I'm pretty sure I could eat clotted cream every day if I had to! The peach saison was really lightly peached, and so drinkable. I definitely could have drunk a lot of it!
All in all, it was an excellent evening and the perfect end to Sheffield Beer Week for us. The beer was, as we knew it would be, excellent. And the food was really good, so we'll definitely be heading back to The Stag for dinner soon. It's somewhere we feel like we ought to go to more, it's a really nice space, and I'll be honest, somewhere we probably only visit in the summer as it's really nice sitting outside in their beer garden! But it's only 10 minutes from our house, so we'll 100% be back for food soon!

Thank you so much for the invite, Thornbridge, we loved it!

Gifted - We were given this meal in return for sharing the evening. All the views are our own!
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House Update: Our Kitchen revamp

The first thing we wanted to do when we moved into the house was to rip out the kitchen and start again with it - tiled work surfaces are definitely not our design choice! But, well, kitchens are expensive, and Jim is incredibly indecisive when it comes to designing a big ticket item like this - especially when it was his space to design, with him being the cook in our house!
Before
Then we thought about maybe tarting up what we had, painting the cabinets, and getting a new worktop, adding extra space to the narrow cupboard that was built into the corner, but when we bought a new washing machine we found out that the floor was rotten underneath the old one thanks to a slow drip that had probably been going for years and years and needed replacing, so at that point we knew we had to just scrap that plan and save up for the full renovation - floor and all! So we left things that were just down right messy and gross - like the unboxed in boiler, and the unpainted plaster around the door and window! Even though it was super embarrassing!
Before
But finally, towards the end of last year, we were able to go ahead with starting to plan a new kitchen. We'd been to see some of the big chain kitchen companies, but they were all coming in over budget for us, and so a few people suggested a local company, Sheffield Kitchen Outlet. And not only were they the most reasonably priced, but they came up with the nicest design we'd seen, and were able to get a fitter in who could do all the extra things we needed doing.
So, in December our kitchen was ripped out and we moved the kettle and microwave to the dining room, along with every other thing from our kitchen. Then the floor came up, to reveal a 15ft drop into the space beneath the kitchen floor, and even more alarmingly, we also found a bit of it in another spot, where the floor had rotted away and was just being held up by the vinyl flooring tiles! Which wouldn't be so alarming if I'd not just a few weeks before been jumping in that spot to show Jim how bouncy it was. Our builder, Scott, told me he was amazing I'd not fallen through it!
As you can see, there was a LOT of dirt, a lot of dust, and a lot of mess! And the hole under the floor - well, that contained a lot of cobwebs and some cleaning products that had fallen out of the back of the cleaning cupboard and through the hole by the washing machine! It was such a glamorous life I was living before, wasn't it!

But eventually, the floor was replaced so we no longer might fall down into a 15ft abyss, some rogue gas pipes from the middle ages were re-routed, some other now-defunct waterpipes were cut out, the height of the hole in the chimney breast was the increased, the walls were replastered, and then, only then, could the kitchen fitting start!
Now, onto the kitchen we chose. We haven't gone for anything groundbreaking or revolutionary in our kitchen design. We don't really have the space for anything too crazy, and we definitely didn't have the budget, but what we have gone for is what we wanted - not what would make a good instagram picture! Mostly because Jim doesn't give a fuck about instagram, but does care an awful lot about having lots of countertops!

We've chosen a mushroom-y grey cabinet door colour, I believe it's called Mornington Grey, in a shaker style, with extra height cabinets on the wall, to make use of the super high ceilings we've got. Currently, we've just got slightly off white walls because we just can't quite decide which colour to put on the chimney breast, and there is a pile of tiles in the dining room, just waiting to go on the walls under the cabinets and behind the hob!


Before
After

We debated a range cooker in the space where the chimney is, but in the end, Jim decided to go for two wall mounted cookers and a large hob in that space instead - which just made more sense for the types of cooking he does. He was also really keen on having a Belfast sink, so we have one of those too! And a wine fridge so that we could reclaim our actual fridge from all the beer we were keeping in it.........And his other pre-requisite was a lot of countertop space.......which he's also got too!

Before
After

My demands were anything other than a white floor, and space on the kitchen sides for my Kitchenaid.  Mostly because it's far too heavy to be lugging in and out of cupboards! And we achieved both of those too!
The ovens we have are a small microwave oven and then a full sized oven. Jim picked them specifically because they go down really low, so are perfect for him when he's proofing bread. Honestly, that was the criteria for picking the oven. The perks, or perils of living with a foodie!
So, there you have it. Our kitchen revamp.
I think you'll agree it's a little bit different from what we started with, and like I said, there are just a couple of bits of that we still need to do, but the main thing is that it's so much nicer than it was before, there aren't any gross tiled surfaces to contend with, and we've got loads of space for all our stuff!





Kitchen bought from - Sheffield Kitchen Outlet
Paint - Valspar 
Floor  - Camero Yorkstone tiles fitted by Mintons 
Square frames - Habitat
Coffee Machine - Nespresso Creatista
Clock - B&M Bargains
Spice Jars - Anthropologie
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