Chemo BellEnd

Chemo Bell End!

Did you know that on many Oncology wards across the globe there are these bizarre contraptions called Chemo bells? (No, they are not a knob related chemo side effect) They are actual Bells hung on the wall of the Cancer treatment ward.

It does not ring the time, thankfully, (that would be an hourly reminded of hour long you’ve been sat on your arse) it is a bell that sounds the end of treatment.

It is traditionally rung by the patient, spelling the end of their chemotherapy course. An announcement to all the other patients in oncology that they have reached the end of treatment and therefore are cured and will not be returning to a cancer ward, (unless unfortunate enough to experience a metastasis or secondary spread of the primary cancer as its more commonly known.)

Isn’t that marvellous. Ringing out your victory over Cancer, across the Cancer ward for all the other Cancer patients to hear?

No, no its bloody not. Shall I tell you why it’s a metal crock of shit? Because there are many patients that hear that bell knowing full well that they will never get to ring it. Those of us unlucky enough to have secondary cancer will NEVER finish treatment and will never have the chance to ring that bell. That bell is another reminder that we will never be cured. We hear that bell, whilst hooked up to our palliative care and endure the resounding gong of a victory that we shall never experience. It’s cruel really. ‘Ding dong here’s what you’ll never have ding dong.’

That’s not to take away from those lucky enough to have that experience, but why oh why is it right in full view and ear shot of those that will never qualify? I’m happy for those that get to do it, but why not shove that bell somewhere we don’t have to be reminded of it. Maybe up Cancers ass?

My friend Mel, who is a ‘lifer’ like me, summarises what many of us secondary patients feel about this bell….

It's time for it to go. And we aren’t the only ones that feel this way. Many of the Primary clan do too. “I could see it was there but I just didn’t have the heart to partake. It’s like rubbing people’s faces in it” Hear hear. The bells were well meant, and provided by people and charities that care, but it’s time to move them. Don’t be a thoughtless knob…. get rid of the gong. #ChemoBellEnd

Saying Goodbye

When I was first diagnosed 3 years ago on September 11th 2015, all I heard in the ‘Bad News Room’ was “Inflammatory Breast Cancer, not sure the extent of spread, 2-5 years prognosis.” As I sat there at 13 weeks pregnant, with a boy that had just turned 1 the day before and a 2 year old at home, all I could think about was how my children would grow up without their mum. If I was one of the ‘lucky’ ones and reached 5 years with IBC, the kids would be 5,6 and 7 when I died. I’d see all three start primary school, watch them swim without armbands and most likely (growing up in our house), see them nurture a love of toilet humour. In a worse case scenario they’d be 2,3 and 4. There would be one school start in which I’d die a week later, a free floating turd in the local pool and a severe underappreciation of farting.

I would be missing many important milestones in the lives of my children, whatever the outcome.

Then we had the full results of my Cancer ‘shituation.’ The spread was into my lymph nodes and lungs, then later a further spread into my blood. So, we were realistically looking at pool turds only. It was shit. But what was I most scared of?

The lack of control played a large part in my fear but the front runner was the act of saying goodbye. I could visualise those final few days when no one knew precisely when I’d die. Every time someone said goodbye to me, we would think it could be the final time. However, adults understand what’s happening. How do you say goodbye to a small child that has zero concept of the gravity of those words. What if I said goodbye to the three kids and then they had a tantrum in my hospital room because they were bored and wanted to go home and watch Peppa Pig? The last sight I would see of the kids was them wrestling to get away from me.

It ate me up.

What if they blamed me for leaving? What if they thought I’d abandoned them?  How would they feel when they called out for me in the night and I never came?

This is what is so profoundly difficult about being a mum with stage 4 Cancer. It is a life limiting disease. There is no cure. I will be on chemo or similar for the rest of my life. Fact. And at some point, I will have to say goodbye. A real goodbye. One that is final. Its dreadful. Unfair. Absolutely fucking shit. But then again, I’ve done it already. In a twist on life’s rollercoaster of unfathomable wankyness, I had to say goodbye to my daughter, Ally. I watched as she left us at just 8 days old. The most surreal moment of my life.

This coming Tuesday is 3 years since my diagnosis, 3 and a half years since Cancer arrived and I’m not dead yet. In fact in some ways, I’ve never been more alive.

Oh and on Friday, my 3 year old Tait had his first official swimming lesson and he was brilliant. Not a pool turd in sight. That was last year.....

Get a life

On Friday morning on my way out to start the day, I noticed a shit on my drive. I don’t mean a person of annoyance, I mean an actual colon travelled food pile. A shit. Turd. Log. Poo. It wasn’t human. It was canine. This in itself isn’t blog worthy but I’m getting to that. Call me old fashioned, but I was annoyed. Someone had allowed their dog to walk onto my driveway, squat down and lay a cable on my land! I’ve got kids that expect to be able to walk on their own land, shoeless, without fear of nuggets between their toes. It got right on my tit. So, I did what any disgruntled resident would do and went to the town Facebook page to exude some passive aggression ... 

I attached this as evidence....

I don’t know what I was expecting really. I just wanted to say how unamused I was with the shit. I’m not annoyed with the dog. I like dogs. In fact my brother has a dog called Steve and he’s a fine fellow. No, I was annoyed with the owner. Disgusting lazy wank stain not clearing up their dogs shit. If either of my sons shat on someone’s drive, I’d clear it up. 

Anyway, the comments flowed in and I got the comradery I expected, shocked emoji faces, a few poo puns which I enjoyed, Janet reminding everyone not to tar all dog owners with the same brush etc etc but then there was Brian. 

Now let’s be honest, Brian’s a bone head that failed to see the irony in telling someone to get a life for writing on social media about the shit whilst writing on social media about the shit. I love the 'moronic ironic's', they're fantastic and exactly why I love the local whinge pages. It gives a voice to the people, even the ones that wear sandals and socks in public but like to go home and dress as an adult baby. 

Anyway, what did make me think was the term ‘get a life’. An idiom meant as a low level insult that suggests someone wastes their time on the mundane. Brian has no idea about my situation. He doesn’t realise that he’s just told someone with incurable cancer to ‘get a life.’ He’d most likely feel awful and a bit of a shit himself if he knew. So I simply replied with this... 

And ironically Brian himself hit the thumbs up button. 👍I like to think it was more of a touché. 

What Brian’s comment did highlight to me is that since I’ve been “dying” (and I use this term for artistic value because although they keep telling me that my prognosis is 2-5 years and I’m 3.5 years in, I’m not even close to that yet) but since I’ve been "dying", I’ve never been more alive. 

I travel loads, ride my horse, cycle miles and miles, have chemo, take each day as it comes, do the floss with the kids, see my friends all the time, laugh at farts, drink wine, play practical jokes and get annoyed by mundane stuff like dogs shitting on my drive. 

Getting a life really is exactly what we should all be doing.

Brian my lover, I have got a life. And for that, I’m truly thankful. 

Don't call us losers

Would you like to know something that boils my piss? It may sound trivial to you or you may think I’m being over sensitive, but as an official inhabitant of ‘CancerLand’ AND speaking for many others in my position that feel the same, that it really grips my tit that when I die, you will call me a loser.

I know! Aren’t you an awful person?!

You would never do that. Would you? But I can confirm muggles everywhere do it so often it’s become as common as wiping one’s arse. What kind of asshat calls a loved one that’s died a loser? And yet when someone dies from Cancer, the typical cliché that’s stapled onto their Facebook status is ‘They lost their battle with Cancer’. 

Maybe I’m being hard on you because of course, I don’t really know what you’d say if you had to discuss a Cancer persons death. I’m chucking you in a box, aren’t I? With all the other sheep out there... in fact I was probably once in that box too.... in the corner eating a double decker and googling ‘Puss-Porn.’

I just can’t fathom this ‘losing a battle’ crap and why it seems synonymous with Cancer folk. Imagine breaking the news on Facebook that someone you love had died in a car accident? Would you write ‘I’m sorry to tell you Dave has died...he was hit by a bus whilst crossing the road...he lost his fight with the 359’. Poor Dave. He couldn’t bloody help it. I’m sure he didn’t just lie down and bleed to death at the side of the road, I bet he was desperate to keep breathing but he had no control. And not only has he died, you’re calling him a loser. Christ on a bike! 

When you’re diagnosed with secondary cancer like me, (cancer that has spread to a distant sight from the original place) you are incurable and can spend the rest of your life knowing that whatever you do you will end up a loser. The writings on the wall. At some point you’ll die and not only is being dead a bit shit, you’re now also a loser. And it doesn’t matter how long you live for beyond that diagnosis. You are still a loser. 

I catch infections quite often due to lower immunity from the drugs and rather than a bit of Savlon and plasters, I can wind up in hospital for a week on a rotation of intravenous anti-biotics and paracetamol without the energy to lift my head off the pillow accept to watch ‘Love Island.’ I will throw up, be prodded with needles and stuck in a ward with my fellow cancer patients munching on unidentifiable food, listening to people fill their commodes.

I remember a stay last year when I was in a ward with four others. The lady in the next bed appeared uncomfortable but lucid. In the morning her husband came into visit and later the Dr turned up. He pulled the curtain around them as if this magical cotton cloth had evolved itself to become sound proof, and he delivered the news. ‘Maud you’re not doing so well on these chemo tablets and therefore I think it’s time we withdrew them. That reduces the time to about 7 days. Have you given any thought to what you’d like to do? Would you like to go home?’ Wow. Home, I thought. Lucky Maud.

But Maud was being asked where she would like to die. She had a week left.

Now I don’t know Maud, but I know when you get to this point you’ve been through every drug available and there is nothing left to try. You’ve run out of options. Maud will have endured years of treatments, appointments, scans, injections, blood tests, vomiting, the shits, nights sweets, baldness, nosebleeds, dental issues, nail loss, sympathy stares, discrimination, loss of friends, emotional trauma, mobility issues and now she is going to die. And to top it all off, when she does die she will be branded a loser! Fucking hell!

Whilst enduring all the things that Cancer has to offer she could also have raised awareness, fundraised thousands for charity, inspired countless people, travelled the world, raised her grandkids, fought for drugs for others, reconnected with what’s important, taken time for herself, loved very deeply, spent more time with her friends, smiled constantly, reinvented her life and although she had Cancer and it caused her death she died a hero! Maybe not your hero, but her own or her families. 

She is most defiantly not a loser. Just because you die it doesn’t mean you lost. It’s what you do in life that defines you, not your death.  No one lives forever.

She didn’t lose her battle with Cancer, she chose to live her life the way she wanted, and she won. She won in her life. It may have been shorter than she would have chosen and she couldn’t control her death but if you find anyone that can... pass me their email. 

So, I’m asking for me and maybe a few others, please don’t say we lost. Say whatever else you like but just not that. We go to hell and back, enduring years of being poisoned, burned and chopped up. Dealing with emotions about death, wondering how to say goodbye to people when the time comes and all other manner of horrors, but we still laugh our way through it and live our lives just like you. If that isn’t winning, I don’t know what is.

And if I find any of you writing the word ‘lost’ about me I’ll be so raging I’ll haunt you. 

If I could have a wish it would be to live until 100 and beyond. But I can only live now. Just like you. We are no different. We all die.

If you outlive me... and you find yourself typing the words ‘lost’ into your phones when announcing my death.... stop and remember this blog and copy and paste the following:

‘Heidi’s goal was to live her life the way she chose. And she won.’

World Book Day and all who dwell on her

World book day is not something you really have to worry about until your child starts school. In nursery you can make a half arse attempt to get involved by allowing your child to fish out any mildew covered fancy dress outfit from the dressing up box. For example, today, Tait who is 3, went to nursery dressed ankle to neck as spider man but wearing a pirate hat and wielding a rather heavy cutlass. I conveniently ‘forgot’ the book that depicts Spiderman disguised as a pirate and just rolled him over the threshold. Tait’s keyworker Emma was dressed as the Witch from ‘Room on the Broom’ by Julia Donaldson, a book that holds a very special place in my heart.

On the day that our daughter Ally was brought to us in the Acorn suite at Southmead hospital, my husband read this book to her twice.

Now this may not seem that unusual, many people read books to their children in hospital, books that they love from home that they’ve heard a million times, to bring them comfort. The difference here was that Ally was only 8 days old and had never heard this book before. She hadn’t had the time to learn all the things that fell off the Witch whilst she was in flight, or to love all the animals that the Witch lovingly welcomed on to her broom.

And the Acorn Suite was the room in which Ally was brought in to die.

As parents, we hadn’t had the time to experience many of the special moments we share with our children, moments that we don’t always appreciate. We had changed her nappy and had held her, but we hadn’t been able to take her home to see her bedroom, she hadn’t squeezed a teddy bear and she hadn’t had time to fall in love with a story. We hadn’t had the chance to read her anything and have her gesture for it to be repeated a million times until we knew the words off by heart.

In a time when you look at your baby and know that they will soon be gone, there are no guidelines as to how you conduct yourself. How do you spend time with your baby knowing that this time will shortly expire? I could only stare at her and try to keep control of my constant urge to vomit. 

I could only stare.

My husband reached inside a bag and produced ‘Room on the Broom’ and started to read. This was Noah’s first birthday present and had become a household favourite. 

It was perfect and imperfect in equal measure.

When he finished reading we continued to stare at her. Our perfect little girl.

Then some time later, he picked up the book and read it again. The second time was harder to process because we knew it would be the last.

“the witch tapped her broomstick and whoosh they were gone”

That is how the story ends.

But it wasn’t the end of our story. We will always be a family of five.

When I dropped Tait into Nursery this morning I marvelled at all the little-ones dressed as their favourite book characters. All of them representing the books they had heard a million times read to them by their family’s… and then I saw Emma as ‘the Witch.’ 

It made me smile.

As Noah and I left Tait to head home Noah shouted, “look a butterfly, its Ally”, (for some reason, all around Portishead where I live are these Butterfly stickers on lamp posts. I doubt many people notice them but when I first saw them on every lamp post on my street I cried. I’ve no idea where they came from or for what reason, but it has a hell of an impact on me). Noah points at 3 butterflies together on a lamp post by the bus stop and say’s “I love you Ally”. I then asked him what he thought Ally would be wearing today for world book day if she were here? He ‘umms’ and ‘ahhs’ and says, “I don’t know”. I suggest “maybe Peppa Pig?” and Noah replies that “yes” that’s exactly what she’d be going as. Noah, who is five, then asks “Ally is alive in Heaven Mummy isn’t she?” I say yes then no and then yes again because I don’t have the answers. Noah then tells me he is freezing and that he wants the heating on full blast when we get home for breakfast. Boof, just like that, a subject change so profound it gives you whiplash. That’s kids for you.

As we walked passed all the kids on our way home, we encountered several Harry Potters, a banana and what can only be described as a giant tomato scuttling towards their various schools. As we tackle the impending apocalyptic weather and a disastrous decline of bread rations at Waitrose, I’m aware that for all the moaning we do about costumes, everyone makes an effort. I think we realise the importance of books. Books make memories and memories cannot be taken.

As we reach home to stuff some cereal down our necks before I throw Noah across the road to school, I think of Ally’s costume. She would be two years old and would possibly be conducting a dirty protest as she wanted to have sweets for breakfast. She could be tantrumming because she didn’t want to go to nursery and wanted to trash the playroom instead. I would attempt to exchange good behaviour with the promise of chocolate later and that would fail miserably. I would be considering giving up and then would remember her out-fit. I’d whip up the stairs and back down with the cloth bellowing behind me, hidden from view. Ally would be incandescent with rage over ‘Masher and the Bear’ finishing on TV as I produce what I’ve been hiding behind my back. She goes silent as I say, “here is your costume stinky.”

And I can see a smile spread across her face as she simply points at it and says “Witch”.

Missing at Christmas

Christmas time, mistletoe and wine 

Children singing Christian rhyme 

with logs on the fire and gifts on the tree 

it’s time to rejoice in the good that we see.

Hold up....that’s a little misleading. 

How’s about this?

Christmas time, can of ‘Natch’ like slime 

Children whinge and moan all the time.

shite on the telly; fucking hate my Christmas tree 

the needles are stuck in my toes constantly.

That’s a bit more like it. 

January’s landed.

And so has my ass. 

Ahh the sweet Christmas hangover. You’re 6lbs heavier than you were prior to advent, everyone’s angry because they’ve had to trek up or down the M6 to spend time with people they don’t like and you’ve no idea when to stop saying ‘happy new year’ to people. You’re experiencing your annual seethe as you put so much thought into that hand engraved replica of an old Ming Vase for your sister in law Flangela and once again you’ve been thrown a purse from Poundland and yet another set of Lavender hand cream. 

Your cupboards are packed full of food but there’s nothing to eat, your kids bedroom floor is still covered in boxed toys that he’ll never put away, you’ve had to hide the chocolate coin maker because, let’s be honest, it’s a load of shit and no matter how hard you scrub, your fridge still smells of cheese! 

Yes my friends!! Happy new year!!!!!!

I grew up obsessed with Christmas. My mum always made such an effort to make it special for my brother and I. 

I’ve been enjoying a Christmas stocking up to the age of 35 and it’s still as exciting as when I was little. 

I used to wake up about 4 am, count all the stocking fillers and calculate how often I could open one to stretch the time out until 6am when we were allowed to get up. 

I loved the smell of Christmas turkey whafting up the stairs at 5am (that’s not a typo) and running downstairs to plow headfirst into a pile of multicoloured paper. I really enjoyed sectioning off all the sweets and chocolates into their own box and working out which order I’d eat them in. I always felt cheated by a Twix....its not a chocolate bar...it’s a covert biscuit! That would go first.

I remember in April 2012 when I discovered I was pregnant with my first boy Noah that I’d quickly calculated a December due date and all I could think about was Christmas Carole’s. That lasted the whole way through the 2nd and 3rd trimester and I would well up every time I thought of ‘Christmas time mistletoe and wine’, imagining how amazing  it would be having a baby in my arms while eating Christmas dinner. In truth I spent Christmas 2012 in tears because Noah was 5 days old, I hadn’t slept, my nips were the colour of Rudolph’s nose from all the feeding and felt like they were like ‘logs on the fire’ from the searing pain of latching. Dinner arrived and I cautiously lowered myself down onto my seat to pretend to enjoy the pigs in blankets and even though I’d reversed at a snails pace, just as my bum connected with the wood my lady-stitches all burst open and I was left with the worlds biggest Fanhole (imagine your Fan and bum collide - that’s right). It was a magical day.

After the anticlimax that was Christmas 2012, 2013 was fab. 

I discovered on Xmas eve that I was pregnant with Tait. It was Noah’s first proper Christmas too as he could eat by then and was no longer destroying my boobs. The Fanhole had returned to something resembling normal so I could sit down like a normal person and enjoy my Xmas dinner. Lush! 

Christmas 2014 was exhausting. Noah wouldn’t sleep in his bed and I had Tait to feed through the night so that one was a bit of a blur.

But nothing would ever prepare me for Christmas 2015. 

Nor will another ever be this emotional, traumatic, challenging or inexplicably sad.

You see our daughter was born 15 days before Christmas.

Our daughter died 6 days before Christmas.

Noah turned two, 5 days before Christmas.

I began gruelling chemotherapy treatment 3 days before Christmas.

I discovered my Cancer had spread 2 days before Christmas.

And we spent the so-say happiest day of the year without one of our children at Christmas. 

We then buried our daughter 5 days after Christmas.

Yeah, Christmas 2015 was a bit Shit.

When Ally died I asked my mum to go to our house and remove all the cards, balloons and Christmas presents for her and take them to her house. I couldn’t bare the thought of coming home to a house full of all the well wishes knowing now that they’d turned into a symbol of living hell. 

I remember the drive back from hospital after we’d said goodbye and we drove into Portishead and the Christmas lights were twinkling away like nothing had happened. I was dumbfounded at how everything was the same as the day I’d left to give birth to her. I couldn’t compute that the world was still turning. 

I remember how sick I felt on Christmas morning trying to be so happy and excited for the boys that Santa had come and made their wishes come true and yet inside all I could think was how could I make my wish come true and bring Ally back. 

Well that year was the worst year of my life. Believe me when I tell you that Cancer is a piece of piss comparatively to losing your child.

I wondered how I’d manage to keep going but those two little boys were a stark reminder that I wasn’t going anywhere soon and that I had a job I damn well needed to get on with and that was being a mum! 

Truth be told, the boys saved my life. 

People often ask ‘how do you get over it?’

Well, you don’t. You just learn to live with it running alongside your life. My grief is very much like my cancer. It’s there in some ways and can pop up anywhere at any time. It never goes away but your body and mind learn to manage it. It has to. It’s how we humans survive. 

So now I’ve suitably depressed you. I’ll tell you about Christmas 2017.

Well I’ll tell you, the kids were feral!!!!! Feral!! My house was like fight club meets the Thunderdome from the minute the Christmas tree went up. That tall green asshole was like the 

starting gun for toddler warfare in our house. Noah shoots Tait in the face with a Spider-Man gun, Tait whacks Noah over the head with The Incredible Hulk so Noah picks the stuffing out of the skull of Tait’s dog, Tait chucks Pirate Pete off the top bunk, Noah tells Tait that Santa will pull his pants down and fart on his head instead of filling is stocking so Tait rips a page out of Noah’s favourite book and chews it. Then they both wee on each other in the bath.

Santa turns up to the house for a visit before Christmas ( this was arranged for the boys by a charity called Towards Tomorrow Together) and they both act like angels for an hour. Then they crash on the sofa to watch ‘Stickman’ as all that acting has worn them out.

In truth December was sheer and utter carnage so over the last few weeks people are asking “nice Christmas?” and I say “yeah it was good. The kids were feral. I blame the Christmas tree. Bye”. 

This year though I remembered to have some ‘me time’ and decided to rein-act my youth at the local pub ‘the Plough’ where no ones heard of Malbec and they serve the local battery acid in £2 cans. There’s a DJ ( Nice one Clarkey) and us mums and dads out-danced all the local cool kids by a mile. I stagger home at 3am in the December rain with no shoes or socks on because quite frankly that’s how I roll.

Christmas morning comes and the boys open far too many presents that have been wedged in under and around the Christmas tree. It’s quite frankly ridiculous but no matter how many gifts under that tree it’s so apparent to me that one pile is missing.

Ally would have been two this Christmas and I know that my little girl would have unwrapped a bright pink Barbie...and then whacked it straight across her brothers heads. 

That’s my girl.

Happy new year all.

In 2018.....don’t sweat the small stuff.