Oh Gosh Blog | Em

A 'Being Childfree' guest post

noreply@blogger.com (Emma) — Fri, 14 Aug 2020 19:57:00 +0000

"There seems to be no shame in asking people if they have children, and even asking why they don’t have children, but oddly, there seems to be a taboo in me responding to the question with “I have terminal cancer”, apparently, that makes people feel uncomfortable."

I've not blogged for the longest time. (I'm not sure what to say all that much anymore - don't really do much these days - and angry cancer blogs are going to get boring fast!)

But the wonderful Lindsay at Boo and Maddie asked me to take part in her 'being childfree' series and I couldn't say no, so I wrote a thing. You can read the whole thing here.

Please be kind. 😘
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4 years ago today

noreply@blogger.com (Emma) — Thu, 06 Aug 2020 09:00:00 +0000

4 years ago today, a 35 year old version of me, with beautiful long hair and all the energy in the world, sat in a room and listened as a friendly surgeon and a kind nurse told her she had breast cancer. A cancerous lump. A small, treatable, lump.

That 4 year ago version of me sat naively, telling herself, that she'd do what the drs said have her treatment and get on with her life. That version of me heard the news she had cancer and went out that very same night for for dinner with her friends, she made videos, she drank cocktails and pretended nothing was wrong.

Then she had the worst 9 months of her life so far, with a lumpectomy, and IVF, and chemo and radiotherapy, and thought it was done.

She didn't for one second believe she'd still, every 3 weeks, be visiting that wonderful nurse she'd met in that room all those years ago. That today she'd be having her 67th treatment. That the cancer would have gone, and then, less than a year later, returned. Incurable. That it would be an all consuming beast in her life.

I miss that version of me. The one who looked on the bright side because she hadn't learnt to think the worst. Who had full eyebrows and a perfect balayage. Who lived adventure to adventure, not scan to scan.

And who hadn't put everyone in her world through an incurable cancer diagnosis.

I guess what I'm trying to say is today is my my cancerversary and fuck cancer. But also, thank fuck for the people who have helped keep me here - medical or not........And also, never, ever, ever, take beautiful hair for granted!

noreply@blogger.com (Emma) — Sun, 21 Jun 2020 23:00:00 +0000

I'm not sleeping well right now, but I know this machine and what it'll tell us is the reason why.

Waiting for scan results is hard. But it's also hard to explain to people not in this world.......Imagine every 1/3/6 months (depending on your scan schedule - mine is 3 right now!) taking a test that ultimately determines your future, but it being a test you can't cram for, that you can't influence in any real way. You just have to hope the drugs are working.

And then imagine the wait for the results.

In a way, and I know this sounds crazy because my cancer has been growing for the last few scans, I'm less worried than I was when it was stable. I know I'm going to be changing treatment at some point soon. Which means if my new hormone drug, exemestane, has worked, then that's a much better result than I'm expecting. But changing treatment means there's one less set of drugs available ahead of me to keep me alive. And that's a terrifying prospect!

So, if I'm slow at replying to you, or distracted when we chat, here's the reason why. My brain has a lot to worry about right now!

I'm not sure when I'll get my results, (COVID means my hospital have far more scans on than normal) but I've asked my oncologist to call me with the results rather than seeing him face to face, no point masking up and going in if I don't need to, right?

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

noreply@blogger.com (Emma) — Thu, 18 Jun 2020 07:30:00 +0000

View this post on Instagram

A post shared by 𝔼𝕞 | 𝕆𝕙 𝔾𝕠𝕤𝕙 (@ohgoshem) on Jun 18, 2020 at 4:09am PDT

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 that @cr_uk 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!

Tips for surviving social self isolation from a cancer thriver

noreply@blogger.com (Emma) — Mon, 16 Mar 2020 09:36:00 +0000

I've been seeing so many posts about people freaking out about having to socially self isolate, and I'm sure people have lots of valid reasons to be scared, but for a lot of us on here with cancer, isolating ourselves from society isn't a new thing.

So, if you find yourself having to socially isolate, here are a few things, that won't break the bank, and that got me through a lot of months during chemo;

- Read. Read widely and indiscriminately. Read things that challenge you, read trash, read about history and deep space and wild love affairs and real lives.

- Binge watch something. May I, if you've not already seen them, suggest iZombie, Schitts Creek, Community, Santa Clarita Diet.....

- Clear out your wardrobes. And drawers. And shoes. Make charity shop or clothes swap piles for when you're able to mingle with society again.

- Take yourself out into the wild and walk. Find somewhere open, where you're unlikely to meet many people, because self isolating doesn't mean you can't leave your house!

- Organise your holiday photos. Don't tell me you've not had this on a mentalto do list for ever.

- Take an online course. Loads of people offer free short courses, and I'm seeing a bunch of people moving conferences online and offering them free.

- Start tidying up your garden. It's the right time and to be doing it and it gets you outside too.

- Shop the house for things you can move about to redecorate with.

- Work your way through your crafting supplies. I don't believe you don't have them. (Maybe some self isolating will be the thing that gets me silversmithing again rather than running about doing everything but creating?)

- And stay in touch with people. Text. Video chat. Call. Email. I think it'll be easier if lots of people are having to self isolate because hopefully we'll be aware that people are on their own.

I won't lie, chemo was a very lonely time (outside a few friends), but if more people are experiencing this sort of world, I'm hoping everyone will help each other out with regards to staying in touch a bit more.

The sadness in saying goodbye to friends. Regularly.

noreply@blogger.com (Emma) — Wed, 26 Feb 2020 15:59:00 +0000

Right now I'm sad. I'm sad and I'm angry. I'm sick and tired of my friends dying and the world not giving a shit.

Metastatic breast cancer is the biggest killer of women under 50 and people I know, personally and through social media, are dying - week in week out - of it.

But they aren't famous. They aren't influencers. So it feels like no-one cares.

No-one starts a petition, or a hashtag, or a movement, when these women die. No-one will when I die.

Women who are doing every single thing possible to stay alive. Taking every drug they're told to. Being positive. Living their lives to the fullest.

AND THEY'RET STILL DYING.
WE'RE STILL DYING.
AND SOME DAYS ITS JUST TOO MUCH FOR ME TO TAKE!

It's hard to be positive about a long life and a cure and beating the 5 year odds when people are dying all around you.

And it'd be easy for someone on the outside of cancer to ask why I'm still making friends with people with a MBC diagnosis if it's so heartbreaking when they die, but think for a second about what that means......because having cancer is incredibly lonely. Even your closest friends on the outside of cancer can't begin to understand what it's like. And now, just think about the most stressful situation in your life, and think about it if you didn't have any friends who understood what you're going through.

So those of us, young or old, with metastatic breast cancer cling together in a common solidarity of understanding how it feels to be dying, slowly, too soon. Getting angrier and angrier, as our friends die around us. Wondering when, not if, it's going to be our time, but also hoping for a miracle before that moment comes!

And then people wonder why I'm sad and angry and unabled to forget I have incurable cancer.

Why I can be happy for you, but sad for me at the same time

noreply@blogger.com (Emma) — Tue, 12 Nov 2019 14:15:00 +0000

Over the last year I've watched friends flourish in ways I know that my life won’t be doing, and I wanted to just talk for a little moment about how hard this is for someone living with incurable cancer. Not so that they stop celebrating, or that people feel sorry for me, but more so that people understand when I retreat from certain situations – I am not being rude, I am just protecting myself.

Since my diagnosis, I’ve watched friends buy beautiful new houses and get amazing promotions or start fantastic new jobs or build themselves epic businesses or change careers. I’ve seen friends get pregnant and get married and celebrate big life achievements, or big birthdays.

But, let’s face it, barring a lottery win, there is not going to be a upgrading house move in our future, not with me working part-time – and working part time realistically puts a stop on job promotions or a career change. Just the fact that my current job pays my health insurance and has sick pay* would make it a crazy decision to move from my current role. And well there will be no babies - cancer has seen to it that babies are just something that aren’t in our future and has to be come to terms with.

And, don’t get me wrong, I have been so, so happy for them, I have celebrated with them to the best of my abilities and I love them for moving their lives forwards - but it’s also been really painful at times to watch people do all these things because I know so that so many of these events are ones that I won't get to celebrate in my life. I can't help but be jealous and have a tinge of regret too. Which makes me withdraw from situations, and then I worry that people don’t think I am happy for them.

It's just a really strange situation that I never anticipated being in, and I am still figuring out. And I know I won't be the only one.

I just want to say to everyone I know, please don't stop telling me your awesome news, just know why I might have to take myself out of certain situations, or drink my weight in beer.......

*which I am incredibly grateful for and I know I am so lucky to have so please don’t bother me with telling me how privileged I am. I know I am more fortunate than some, but I also have incurable cancer so, lets face it, I am not winning any luck competitions.

The Hierarchy of a Cancer Patient

noreply@blogger.com (Emma) — Tue, 22 Oct 2019 12:56:00 +0000

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 oneof 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

noreply@blogger.com (Emma) — Sun, 13 Oct 2019 11:23:00 +0000

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.

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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.⠀⠀⠀⠀⠀⠀⠀⠀⠀

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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.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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About 8% of MBC cases are diagnosed 'de-novo' which means they are diagnosed as having incurable cancer right from the start.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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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?⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I'm going to paraphrase from the awesome campaign #MetupUK are running at the moment.......⠀⠀⠀⠀⠀⠀⠀
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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.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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If you want to know more, please visit www.metupuk.org.uk⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀

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.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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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;

View this post on Instagram

"How do you stay so positive?" And other questions. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I asked, earlier this week, if anyone had any questions about my life with MBC. And you asked questions...... I was going to try and pop them all here, but it was getting super wordy, do I recorded an IGTV........ Which may, or may not, make sense! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Please be kind. I don't like this talking to camera stuff, but I'm trying.......🤦‍♀️ (I've also not watched it back so I apologise for any waffle!) ⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
A post shared by 𝔼𝕞 | 𝕆𝕙 𝔾𝕠𝕤𝕙 (@ohgoshem) on Oct 13, 2019 at 11:11am PDT

Happy 1st of Pinktober

noreply@blogger.com (Emma) — Tue, 01 Oct 2019 20:38:00 +0000

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

noreply@blogger.com (Emma) — Tue, 13 Aug 2019 05:30:00 +0000

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!

noreply@blogger.com (Emma) — Mon, 05 Aug 2019 05:36:00 +0000

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

noreply@blogger.com (Emma) — Mon, 22 Jul 2019 11:10:00 +0000

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.

Review: PitPat Pet Activity Monitors

noreply@blogger.com (Emma) — Tue, 11 Jun 2019 09:29:00 +0000

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.)

Cancer: Lets talk about hair baby........

noreply@blogger.com (Emma) — Fri, 05 Apr 2019 06:18:00 +0000

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!

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

noreply@blogger.com (Emma) — Wed, 20 Mar 2019 09:42:00 +0000

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!

House Update: Our Kitchen revamp

noreply@blogger.com (Emma) — Thu, 07 Mar 2019 07:13:00 +0000

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

Granite surfaces - Granite and Marble Designer Surfaces

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

Cancer: My 6 month scan results are in!

noreply@blogger.com (Emma) — Mon, 04 Mar 2019 12:26:00 +0000

Last week, a week ago today, in fact, we got my 6 monthly scan results. And they were pretty bloody brilliant.

My scans were all stable. Which means the treatment I am on is keeping my cancer at bay. Nothing is growing in my sternum is getting bigger, nothing is springing up anywhere it shouldn't.

Stable. It's basically the best word we could hope to hear. It's the one we're all waiting for!

But as great as it is to hear this word, it doesn't mean that treatment gets to stop. No, far from it. I'll still be going to the hospital every 3 weeks for my IV infusions of Herceptin and Perjeta. I'll still be having my denosumab injection every 6 weeks, and my Zoladex injection every 4 weeks. I'll still be taking my letrozole tablets every day. And I'll still be living with the knowledge that a good timescale for an individual metastatic treatment to work is about 18months.

But for now, we're just rejoicing in the fact that everything is stable and this treatment is working! Oh, and cracking open a bottle of champers every now and then to celebrate it!

Review: Dining with friends at the Price of Wales

noreply@blogger.com (Emma) — Wed, 30 Jan 2019 07:22:00 +0000

I'm not sure about the rest of you out there that blog, but sometimes I feel a little bit self-conscious when I'm invited to events that allow you to take none, bloggy friends, along too. I know a few of my friends think this space is silly and have mocked me for it. So, this causes me some trepidation in inviting people along to events. Especially ones that require taking lots of photos.

But last week we were invited to the relaunch of The Prince of Wales pub on Ecclesall Road, here in Sheffield. But as it was my birthday week, and we were invited to bring along a party of four, I decided that I'd see if a couple of our friends who are so none bloggy they don't even really do social media. So the novelty of me taking photos of their food before they were allowed to take a bite wasn't as annoying as it might have been for some friends.

Randomly the Prince is a pub that Jim not only used to chef at but is somewhere where we also know a couple of the current chefs - although, I should say we didn't tell them we were going to be visiting!

On arrival we were offered drinks, Beth and George went for a beer on tap, Jim went for a Jaipur, and I, well, I couldn't pass up the decorate your own gin bar.......I had a Gin Mare and Mediterranean tonic and then garnishes upon garnishes. I should have maybe chosen something savoury to go with the gin, but I couldn't resist the passionfruit.

Next, as we were waiting for our table, we were brought a couple of platters of canapes - lots of small versions of things on the menu. As Beth is a pescatarian, we gave her first pick of anything that wasn't meat and her favourite was a brie bite. The falafal was mine!

Once we were sat down at the table, the real choices started. First up, wine! We decided to go with a merlot to satisfy everyone - I think I am the only white wine drinker of the group and whilst I could have gone with a white, or a gin, I thought I'd stick with the team decision!

We decided, once we'd seen how many items were on the menu, that we'd try and have something different each. It was super easy to do as there were so many different items available. I chose to start with scallops - a choice I will make pretty much every time I see them on a menu, Beth chose the salt and pepper squid (which would have been my second choice, George had a duck liver parfait and Jim went with crispy chicken.

My scallops came with pancetta and lentils which was just delicious, and I had a little taste of Beths squid too. It was really nice!

Our mains did take a while to arrive, but having worked with restaurants in the past, I know that these first nights sometimes run longer on the food than they do once the chefs are used to the menu, but we were bought another bottle of wine, which made the wait feel much less!

Jim had the rack of lamb, picked in part for the dauphinoise potatoes - which to me seems like as good a reason as any to order any meal. Beth had the Sea Bass, George went with the Lobster and Crab fishcakes and I had the Pork Belly. It came with more scallops, but as much as I love scallops I did relent to give them away to other on the table.

My only problem with it all was that I knew we had puddling to come and we'd already had canapes and starters, so I eat everything on my plate, as I had me eye on an eton mess!

And Eton Mess was exactly what I chose for dessert. But with mangos and berries, not the usual strawberries. Beth went with a mini dessert - the cheesecake - and a tea. And George chose to have the crumble. As he was sitting on the other side of the table to me, I had to pass the camera to Jim to get this shot and you can't imagine how proud he is of the dripping custard shot!

As for Jims pud, he went with a melting chocolate and peanut butter dome. Not only was it gold, but it came with a little theatre to finish!

We did discuss finishing the night with a cocktail, but it was a school night so we decided to forgo those for another time. Plus, after four courses of absolutely delicious food, we were totally stuffed.

I have to say everyone was very impressed with their food, and with the ambience and decor in the venue. Beth and I have decided it's getting added into our roster of meeting places when we get together for lunches.

And it was so lovely to be able to treat some friends to a really great meal, on my birthday week. I hate having to pick places for birthday meals as I always feel like if one person gets something a bit iffy, it's my fault for choosing that venue, but we all had such a great meal that we left really happy, full and vowing to return.

[AD - This meal and the associated drinks were given to us free of charge in return for this blog post. But all the words and opinions are mine!]

Recent Reads: The 2018 edition

noreply@blogger.com (Emma) — Sun, 27 Jan 2019 07:00:00 +0000

It's been a while since I wrote one of these. Far too long. But as it turns out 2018 was the first year that I've recorded ALL the books I've been reading, (I even created some sort of poor man book bullet journal). So this post is going to be easier for me than if I was relying on my quite frankly terrible memory!

I thought I'd round up the things I read, and then do a little recap about my favourites.

I managed to get through 42 1/2 books in 2018, which, given my lay about status might not sound like many, but when chemo brain makes reading hard (honestly, not being able to remember what happened on the page you left off on is so frustrating) and you've watched as many random Netflix shows as I have, I think it's a pretty decent number! In fact, I have to say I am pretty proud of it.

Some of these books were hardback - I love a hardback - some were paperbacks, some were 99p kindle first reads, some were just normal kindle purchases. Some were whim purchases based solely on the cover art. Some were recommendations and loaned books. Some were absolute flops. Some have stuck with me for months and months and become books I implore people to read. Some were read during chemo insomnia, some were devoured in the garden in the sun, others in bed on days I couldn't get up, some read on my phone whilst on dog walks because I just couldn't put them down......

So, onto what I read in 2018;

This must be the place - Maggie O'Farrell - ****
A year of Marvellous Ways - Sarah Winman - ****
Everything I never told you - Celeste Ng - ****
Calling Major Tom -David M Barnett - ***
One of us is lying -Karen McManus - ***
The Party - Robyn Harding - **
Little fires everywhere - Celeste Ng - *****
In the dark, In the woods - Eliza Wass - ***
The Copenhagen Affair - Amulya Malladi - ****
The Vanishing of Esme Lennox - Maggie O'Farrell - ****
The versions of us - Laura Barnett - ***
Trespassing - Brandi Rees - **
The places I stopped on the way home - Meg Fee - ****
Eleanor Oliphant - Gail Honeyman - ***
To all the boys I've loved before - Jenny Han - ****
Eat Up - Ruby Tandoh - *****
Zennor in Darkness - Helen Dunmore - ****
The invisible life of Euridice Gusmao -Martha Batalla - *****
Us - David Nicholls - **
Come a little bit closer - Rachel Abbott - ***
All over the place - Geraldine DeRuiter - **
Tattooist of Auschwitz - Heather Morris - *****
All the light we cannot see - Anthony Doerr - *****
Without a hitch - Bettina Hunt - ***
The history of the rain _ Niall Williams - **
The keeper of lost things - Ruth Hogan - ***
The good Liar - Catherine Mackenzie - ***
Leah on the beat - Becky Albertalli - **
The boy in the striped pyjamas - John Boyne - ****
Together - Julie Cohen - ****
The thinnest air - Minka Kent - **
I will never leave you - S.M Thayer - **
The memory shop - Ella Griffin - *****
The summer of impossible things - Rowan Coleman - *****
Where the light gets in - Lucy Dillon - ***
The cancer whisperer - Sophie Sabbage (I didn't finish this book - it was too preachy!) - *
The book thief - Markus Zusak - ****
Big little lies - Lianne Moriarty - ****
Where'd you go Bernadette? Maria Semple - *****
Missing pieces - Laura Pearson - ***
The ragged edge of the night - Olivia Hawker - *****
I let you go - Clare Mackintosh - ***
D-Day - Anthony Beevor (I'm still reading this........)

So, there you have it. The books I read in 2018.

But what were my favourites? And why?

Little fires everywhere - Celeste Ng
I think that everyone who read this book in 2018 loved it, and I totally think that it's justified. It's just the most beautifully written book, that makes you not want to put it down. I read it in two sittings. It touches on teen angst, parenting issues, race issues - I loved how different the lives of the Richardsons and Mia and Pearl were, and how their lives are intertwined in such interesting, and tragic ways.

The invisible life of Euridice Gusmao -Martha Batalla

I got this book in a Reading in Heels book and I know you're not supposed to judge a book by its cover, but I had a feeling I'd enjoy it, but I didn't anticipate how much. It's just so beautifully written. Funny, so much funnier than I thought it would be. And vibrant. And colourful. And it made me think so much about the lives of these women who were supposed to just be wives and mothers but longed to be so much more! Please hunt this book down and read it!

All the light we cannot see - Anthony Doerr
I know I'm a bit late to this one, but I am so glad that I found it. I'm a sucker for a WW2 story - I mean I read history books for fun. The way the story splits between these two young people, caught up in the war, in such different ways was perfect. The way their childhoods have shaped the people they have become, and the way they interact with each other. I felt so much for Werner. And the descriptions of St Malo are just beautiful.

Where'd you go Bernadette? Maria Semple
I got this book after a recommendation by my friend Zoe. It's another book where I was already bought in just by the cover. And then I realised it was set in Seattle, so that was another plus. I have read a few heavy books this year, so the humour in this book was so welcomed, and easily read. I loved the way the book switched between texts and emails and documents. And I really loved how I literally had no clue where it was going as I read!

The ragged edge of the night - Olivia Hawker
I got this as a 99p kindle read, and let me tell you, I have read some absolute dross on those offers, but this one was not one of those books. It's another WW2 story, about a German priest who leaves the monastery after it's decimated by the SS, and decides to do his bit for the war by marrying a widow and helping raise her family.

Tattooist of Auschwitz - Heather Morris
This was another cheap kindle read, maybe not 99p, but hugely discounted at just the moment I needed a train read. And I read this on one trip back from London. It's the story of a man who is forced to be the tattooist of the new people brought to Auschwitz. One of the people he tattoos is a woman, whom he falls in love with. This is the story, the true story it turns out, of how there was some small moments of light in the most horrific of places.

Eat Up - Ruby Tandoh
It's not often I buy a none fiction book that's not a history book, but I had heard such great things about this, and it didn't disappoint. It was funny and educational and easy to read and talked about a love of creme eggs. I feared it might be preachy for me. I hate people telling me how to eat, but it was more of an instruction to give up the food guilt. A love letter to food if you will!

The summer of impossible things - Rowan Coleman
Not going to lie, I'm not usually a fan of time travel in books, but I do love anything that's got a hit of the magical about it, not in a harry potter kind of way mind (Shall I let you in on a secret - not read the books or seen all the films) but back to this book - it's set between the modern day and the 1970s in

The memory shop - Ella Griffin
This is a really pretty, easy read. I bought it as some light relief and that's exactly what it was. It's a beautifully written tale of a woman who goes to her grandparents home after they die, whilst in turmoil herself, and finds herself having to find a way to get rid of their belongings and heal herself - so sets up a little pop-up shop. The characters are really relatable, and it's just a bit of cute book!

This must be the place - Maggie O'Farrell

This is my second Maggie O'Farrell novel, the first was Instructions for a heatwave, and I love her style of writing. You'll see, I read another in close succession. I loved the way this book jumped between the books current day and the characters pasts. I was so bought into Daniel and Claudette's lives that I just wanted to find out everything about their pasts, especially why Claudette, the world-famous actress, had become a recluse in the wilds of Ireland.

-----------------------------------------------

And now I get to start the pile of books I collected over Christmas and my birthday and ordered at the back end of the year and have just sat looking at for a while. But I'll need more.

Tell me, what have been your favourite reads of late. Give me inspiration. Give me a direction in which to turn! Give me more books I have to buy and slowly bankrupt myself doing (or I happily take hand me downs!)

Travel: Bookings are now being taken up until September........

noreply@blogger.com (Emma) — Mon, 14 Jan 2019 06:55:00 +0000

In a somewhat reckless move, I am currently booking events and making plans all the way through the summer, and right up until the end of September......maybe later if Jim gets a date to get his bloody ACL fixed - in which case I'll be drawing up plans for snowboarding next season.

Sod the notion that someone with stage IV cancer shouldn't look past their next scan (which is coming round at an alarming rate and I've got some scanxiety due about the middle of february) I am already planning past the NEXT lot of scans!

Me, I'm currently all about the next thing to look forward to and then the next thing, and the next thing.

We might not be able to sod off on a 3 week trip around California again - ailing bank accounts notwithstanding, my treatment plan currently doesn't allow for us to leave Sheffield for more than 2 weeks at a time - but we are cultivating a summer full of fun and adventure.

I currently have 4 beer festivals in the diary, a hen do (Sam if you're reading this, the stripper is confirmed!), some gigs, weekends away visiting friends a trip to Berlin, a trip to Copenhagen, a week in a chateau in France for a wedding, Glastonbury, a week sailing and various other fun events to be thrown in there too!

I have literally no clue how I am going to finance these trips (more to come on money and cancer I suspect at some point) but I feel like it's really important to have these things to look forward to. To not let myself, or Jim, become a slave to the scans, or the fact that at the moment I have to be at the hospital or doctors every other week. There's no point having all this treatment to prolong my life if it's not a great life, is there?

What do you think? I am crazy or doing the right thing?

Cancer: Blue badge fraud - and why I'm not committing it!

noreply@blogger.com (Emma) — Sat, 12 Jan 2019 07:10:00 +0000

When you get an incurable cancer diagnosis, you can also get a blue badge*. Call it a perk of the job.

I've had mine since June and I'd say at least monthly someone asks me if I know I'm parked in a disabled space, or if they can inspect the badge, or asks me why I'm parked where I am. Given my nan has had her blue badge for a good 10 years and not once has anyone questioned her right to use it, monthly for 6 months seems a bit much.

I should probably start by saying I don't think I'm abusing the system, I mean I use it, but my blue badge rarely comes out to park in actual disabled bays. I've not really found a supermarket car park so big it's required - unless the car park is rammed and then, well, whats a lady to do? And I'll confess, I've also used it Meadowhall once too - in my defence, it was manically busy AND hammering it down. But I do use it regularly when parking in paid parking bays in town. It gives me free parking which is super useful, especially on my reduced income, and it's useful if you're just nipping into a shop but have a quid for the parking meter or I'm in the jewellery studio.

But something I've noticed is that parking attendants and old people seem to think I'm cheating the system. That I shouldn't be using it. That somehow I've got my hands on a badge through a back door, like the dodgy NUS cards we all had before we were allowed one, or those speakers we bought out the back of a van when we were at uni..... Trust me. I wish I had. If I could swap the blue badge out for my bloody health, I'd be all over it. But I can't!

I've had old men quizzing me in the M&S food carpark about why I'm using a disabled bay. Old ladies getting out of their cars to make sure there IS a blue badge on the dashboard. Car park attendants walking slowly past my car checking my credentials. And then, then there are the traffic wardens. They love to make sure that I'm not committing blue badge fraud!

A couple of weeks ago, on christmas eve, on the way back from treatment, I stopped off at some local shops and threw the car in one of the in a street space outside them. See, I'm doing my bit, shopping local. I'd popped to get some beer (a couple of big hitting DIPA's and some sours, if you're interested!) when Jim called to ask me to go get some bits from the cheesemonger across the road.

I popped back to the car with the beer so I didn't have to carry it far, then I jogged across the road for the cheese. When I say jogged, I mean I did that silly run you do when someone is letting you across in front of their car, not an actual jog, more like a strange start to a triple jump with a little shuffle at the end. I got some glorious cheese - one specifically for eating with a strong beer! The beer and cheese pairings were on point that night!

But when I got back to my car there was a parking attendant waiting for me, to check I'm eligible to use the blue badge. I'd seen him when I dropped off the beer, checking tickets, but didn't think much of it. But there he stood, waiting for me, asking me questions, quite aggressively about my blue badge, wanting to know what right I've got to be using it - wanting to know what's wrong with me!

I suppose I ought to be grateful I don't look like I need the badge, but jeez, it's getting old now, explaining that 'yes it's mine, yes I'm entitled to park in this spot, and no, not all disabilities are visible dontyouknow!' If it's a particularly judgemental questioning, like the one on christams eve, I can't be held responsible for dropping the 'T' word in there when I reply. I know it makes them uncomfortable, I can see it in their faces, but it makes me feel better!

It's just another fun side effect of this world I'm inhabiting. Being quizzed about my eligibility to what small perks there are to my current situation. I guess all it means now is I'm going to have to perfect a kaiser soze limp (also, side note - am I allowed to reference him, I just don't know)

*for those of you not in the UK, a blue badge is a parking pass that allows you to park in a disable space! Not to be confused with a blue peter badge - that is a whole different thing!

Cancer: Fuck Cancer Pins are available now!

noreply@blogger.com (Emma) — Wed, 09 Jan 2019 17:22:00 +0000

I've just realised I've not shared these awesome pins here, we launched them in November, but for some reason, I didn't get round to writing this post, but they definitely need sharing far and wide.

Emmie, the extraordinary lady I make the Fuck Cancer pins with, and I wanted to create something a little more accessible, knowing that not everyone can afford one of the necklaces we are making, so we started with pins. Ironically, they arrived on a day I was in the hospital having treatment so we turned my bed into a little factory line, and we'd sold a good few of them before they left the oncology ward, let alone made it online!

The silver and the rose gold necklaces seem to be selling the best, so we started there with colours for the pins. One pin in silver and black, and one pin in rose gold and white. For a while, the rose gold pin was far outselling the silver, but I think right now, we're just about on equal sales. Which is to say we've sold over half of each of the colours of the pins.

At least £5 from the sale of each of the pins is going to Cavendish Cancer Care, a charity in Sheffield that supports people who are affected by cancer. Over the last couple of years, I've had counselling, acupuncture and shiatsu through Cavendish, and every visit with them has been just magical. So raising money for them, to help them support other people is a no brainer!

You can get your pins here.

There’s a hole in my pocket where my dreams fell through.......A life list of goals

noreply@blogger.com (Emma) — Wed, 14 Nov 2018 07:19:00 +0000

Not to put too morbid a spin on things, but sometimes I can't help but think about all the things I thought I'd have a lifetime of years, and money, to achieve that I'm probably just going to have to abandon.

Mostly because I'm never going to be able to afford to do all the things I want to do now or the holiday allowance. And I know I probably shouldn't think like this but I kind of feel like there should be some get-out clause in terms of money, now for me. Unfortunately, life doesn't work like that and mortgages still need to be paid, and food bought, and a life lived so I need to work to do all those things - which will hinder me in living out my life full of adventure and excitement!

Although, I did think that I would never live to see us get a new kitchen, I mean, I thought that before cancer - but that's done so, I've achieved that life goal. Maybe that'll be enough?

Now, in order that these dreams I fear I'll never achieve don't disappear into the ether, I wanted to document them here. These are just a few of the things I want to do - the list is still growing;

Go to Copenhagen (to drink beer) - that beer festival Mikkeller run looks amazing, but discounting that, I'd just love to see the city!
Visit Iceland - because it just looks absolutely amazing!
Go snowboarding again.
Go snowboarding in Japan - snowflakes the size of your hand! THE SIZE OF YOUR HAND!
Own a drone - a photography one, obvz.
Get my dogs trained - them not barking at animals on the TV, or each other, would be bliss!
See my friends weddings.
See my nephews grow up. Because they are super cute little dudes!
Go to San Diego.
Get the swipe-up on Instagram and a blue tick on Twitter.
Live by the sea, again. I just love the sea and I always dreamed I get to live by it again!
Have a go at rally driving.
Go to Glastonbury again.
Brew a beer. Something fruity and Juicy - or maybe a banging sour!
See and photograph the milky way - I wanted to in Mammoth, but it was cloudy EVERY night!
Find my jewellery style!
Get a new snowboard.
Build a house (no, not on the Sims)
Visit Hawaii - I really need a beach holiday and all those surfers would make a beautiful backdrop.
Visit Cuba - I wish I'd gone 10 years ago, or 5 years ago......or at any point in my life so far!
Eat at more Michelin star restaurants
See penguins in the wild - I've always been a bit obsessed with penguins. I just love them.
Do the Inca trail.
Sail more - because it makes me happy.
Live in the mountains again! No explanation is necessary, really.
Go on a Safari. I want to see zebras and lions and elephants in their natural environment. But right now even the Yorkshire wildlife park would be ok!

See, far too many hopes and dreams for my bank balance. Unless the euro millions win I've been eyeing up comes my way. In which case I'm buying a chalet in the mountains, a home by the sea and then working my way down the list one by one!

Jewellery: The Move Mountains Collection from Oh Gosh Silver

noreply@blogger.com (Emma) — Mon, 05 Nov 2018 07:18:00 +0000

A month or so ago, I got my grubby mitts on some beautiful dendrite agate stones. They are just the most dreamy white and translucent and black stones with stunning little scenes in them that look like perfect winters days.

And so began the start of a little wintery collection, one I am calling my 'move mountains' collection.

It consists of the dendrite stones - lots of it in some simple claw settings that show off their beautiful scenes - some mountain silhouettes, and some dainty snowflakes. All the things that I love about the winter!

The snowflakes I made are a new technique, and medium for me - they are made of precious metal clay, which has its challenges, but also allows me to create these really detailed little snowflakes, and not spend all day, every day, swearing about piecing them out! Which is a win in my books!

These earrings were one of the first bits from the collection that I sold, which I have to say I'm kind of annoyed with because I was hoping they wouldn't sell and then I could keep them forever as they were absolutely perfect little drops.

The mountain scenes are all based on mountains that I love. Places I've ridden, and places that have stolen my heart in one way or another. I love how the oxidised silver takes on a slightly oily, night sky blue on the silver, which just makes the polished silver stand out more I think!

One of the bits I like best about some of the set stones are the backs of them - in an attempt to make sure that all the beauty of the stones can be seen I've cut out the back of them. And included mountains on there too!

The current 'Move Mountains' collection can be found on my etsy page, but there are a couple of pieces that I am still waiting to add - I just need to get them polished up to a high shine and then they'll be up there!

If you'd like to take a look, click here to go through to the shop