Hello you beautiful lot. It’s been a while since my last post, so I thought it was only right to finish off the year with a little update. You lucky, lucky people 🤣.

It’s been a funny old couple of months.

In my last post I wrote about how the Mrs had a bit of a wobble. I say wobble. I was close to booking her a little overnight stay at Basildon mental health unit truth be told but I’m pleased to say she’s all good. She’s reduced her hours at work and I think has come to terms with everything a little better. She hasn’t taken up the offer of counselling yet. If you know my wife, then you’ll understand that the thought of sitting in a room with other women comparing notes on cancer and all its related obstacles is her idea of hell. Knowing it’s there and available for her is enough at the moment.

I’ve said it before and it probably sounds boring now but I will continue to say it. Cancer really is just a massive see you next Tuesday. Sadly, back in October, the man I’ve called my father in law for the past 7 years lost his battle with the big C.

After a ‘senior’ moment driving the wrong way down a road towards oncoming traffic he went to the GP, fully expecting I think, to be told he’d had another stroke. However, it turned out to be a lot worse than that. They found brain metastases which were secondary to primary lung cancer. He’d been a heavy smoker for most of his life but hadn’t touched one in years since his stroke. Apart from some shortness of breath and tiredness he’d had no other symptoms. No cough. No chest pain. Cancer had literally creeped up on him and advanced so much in such a short space of time it didn’t even give him a chance to fight it. What an absolute cunt.

He had a couple of hospital stays which he absolutely hated and who can blame him? Stuck in a hospital bed for days on end coupled with a high fever sent him a little bit doolally. He told me a very elaborate story one day about going to a nightclub with Shirley Bassey…
“I don’t know why I was with her, I can’t fucking stand the woman” he told me. Poor Shirley.
He also took umbridge with the tea lady one day as well. I can’t remember exactly why she’d pissed him off but apparently he’d pointed his fingers at her to mimic a gun and tried to shoot her. I think she saw the funny side.

Eventually he came home for good. Most days we would pop in before or after the school run. They were never short of visitors. I think we all knew how sick he was and how quickly he was deteriorating. We all just wanted to get as much time in with him as possible. He would always greet you with his cheeky smile and say he was pleased to see you but sometimes he would have that look in his eyes that said..
“I wish you’d all just fuck off and leave me alone for 5 minutes!”
He would never have said it though. He was too much of a gentlemen for that.

It was a privilege to have been there with him when he died. The man had accepted me into his family, given me permission to adopt his grandchildren and treated me like a son. He was and still is, an absolute legend.

As a paramedic I’ve lost count of the amount of times I’ve had to recognise someone as dead. Check for breathing. Check for a pulse. Check for heart sounds. It becomes second nature. So you can imagine my surprise a little later on when sitting quietly in the room on my own, I started to hear the faintest snoring.
“Ronnie?”
If he’d have answered me I think I’d have had a heart attack there and then. It took me a little while to realise the snoring was coming from underneath the bed where the dog had fallen asleep. For a minute there I thought I was actually going insane.

The day of the funeral we all did him proud. He had a good turn out and it all went very smoothly. No one dropped the coffin… ie me! I’ve carried the coffin a few times now and my biggest fear is tripping over, coffin going arse over tit, lid coming off, old women crying and fainting from the shock… it’s the stuff of nightmares.
The professional mourners were in attendance as well. No one really knows who they are or how they knew the deceased but they stay for the free tea and sandwiches and then disappear never to be seen again. Normally taking a doggy bag with them.

We arrived home slightly merry to a letter waiting for us from the hospital in the wife’s handwriting.
“I think it’s the results from my last mammogram” the Mrs said. They make you write out your address on the envelope for when the results are ready.
“Its all clear!”
“I think that deserves another vodka!”

So, with the funeral over me and the wife starting counting down to our next appointment at the Royal Marsden. This would be our second appointment and the last one of the year. It’s something that you kind of put to the back of your mind before it creeps up on you and the scanxiety starts again.

We like to make a day of it when we travel up to London now. The famous hip flask comes with us and we bring some plastic cups with us to have a few little drinks on the train. It’s partly Dutch courage and to calm the nerves a little, which seem to get worse the closer we get. On the outside we probably look like a normal couple going up to the theatre or something. Either that or a couple of dirty alcoholics.

I can’t stand being late for things which means we normally get to the hospital about an hour before we are meant to. Obviously this means we have to have a drink in the pub.

We know the drill now. Straight up to x-ray and then back down to the waiting room to see the consultant and get the results. It’s normally there that we wait quietly, without speaking as we both go through different scenarios in our heads, torturing ourselves.
What if it’s come back?
It hasn’t.
But what if it has?
It hasn’t.
But what if it has?
It’s relentless.

Me and the Mrs do love a bit of people watching. And there’s nothing like a hospital waiting room to keep you occupied.

Opposite we had Margaret. Margaret was not happy. Margarets appointment was supposed to be at 4pm and it was now 4.15pm. Margaret is a huffer. If anyone gets called in before her she huffs and wants to moan to anyone within earshot. Under no circumstances do you make eye contact with Margaret.

Next to us we had Susan. It’s Susan’s first visit to the Royal Marsden and she wants to let everyone know.
“Siri, call Brian….”
No answer. Susan leaves Brian a voicemail detailing where, what, how and why.
“Siri, call Jennifer…”
No answer… and so on and so forth.
We got called in to our appointment and as we left, Susan was still making her way through her phonebook. She’d have saved a lot of time and energy just checking in on Facebook.

We were called into the consultants room where we waited for about 2 minutes, which seems like a lifetime, before she came in.

“Congratulations Mrs Perry. The x ray is clear and shows no abnormalities”.

Massive relief. Huge. It’s literally like someone has been sitting on your chest getting heavier and heavier and then just like that, they’ve gone.

After a quick feel of the boobs (The consultant, not me), a chat about things to look out for and an appointment booked in for 3 months time we were free to go celebrate. Within 30 minutes we were halfway through a bottle of red and stuffing our faces celebrating another milestone on this journey that no one ever wants to find themselves on.

I started writing this blog at the beginning of 2019 and feel it’s only right to end the year with it too. Back then the future was very uncertain and in some ways, still is. The last year and a half has taught us many lessons. Mainly it has bought home to us just how precious and short life really is and to try and not take too much for granted, because none of us know what could be just around the corner.

So, what’s in store for us in 2020? Holidays. Lots of fucking holidays. The Mrs has a ‘special’ birthday coming up in March and I’ve been informed that the only way to stop her crying into her vodka is to take her away as many times as I can. I’ll let you guess what age she will be because if I write it on here she will break my legs. If I mention the fact I’ve got another 2 years to go, or remind her that she was actually conceived in the 1970’S once more I think she may very well slit my throat.

Apart from holidays, there will of course be the regular 4 monthly trips to the hospital to contend with. Hopefully by the end of the year they will start reducing the visits to every 6 months and eventually just yearly, all being well.

For now, I think that this will be my last blog post for the foreseeable future. It’s more than served it purpose and when I first started writing it, I never ever thought it would have become so popular and read by so many. Besides, as much as I enjoy writing and do try and make it funny and interesting (I hope anyway) I’m pretty sure you’ll start to get bored of hearing about our drunken trips to London after a while, if you haven’t already. I started writing it at the beginning of 2019 so it feels only right to end the year with it.

I’m gonna go now cos I sound like the fucking queen. Thank you to you all for your support, messages and for just taking the time to read our story.

2020, the Perry’s are ready for you. With a renewed energy, a sense of humour and a shit load of vodka. Happy New year you bunch of beautiful bastards. Lets make it a good one.

Our annual Perry family getaway this year was the most relaxed we’ve both felt in a very long time. It was our first time to Greece. Well, my second really but apart from a Chinese masseuse informing me of the real meaning of my Chinese writing tattoo and waking up one night in the mountains, the rest of my week long trip to Zante with my brother 10 years ago is a bit of a blur so I’ve decided it doesn’t count.

Our days pretty much went like this..

Wake up. Eat. Stumble to sunbed. Fall asleep. Wake up dribbling. Go to bar and order a cocktail. Realise it’s only 10.30 in the morning. Consider ordering a coffee. Laugh and order 2 cocktails. Spend rest of the day alternating between eating, drinking, sunbathing and occupying the little one. Go to apartment. Have good intentions of getting ready and going out to enjoy a night of Greek food and culture. End up drinking and playing cards on the balcony. Go to bed. Wake up… you get the drift.

The only non enjoyable part of the holiday was the flight home. After 2 and a half hours catching up with Netflix and drinking vodka (a Perry holiday doesn’t end until its absolutely necessary.. nuclear war, zombie attack, work etc) we started a bumpy approach into Gatwick airport. The airport was in sight and the holiday blues were a mere few seconds away when the engines roared back into life, the nose went up and we soared back into the sky. The captain called it a routine missed approach or aborted landing. I now refer to it as the time I nearly shit my pants approximately 200ft above Gatwick airport runway.

The end of August signals a milestone for me. Another year older and hopefully a little wiser. Maybe this is the year that I’ll finally become a grown up, although I won’t hold my breath. I’ve lied about my age so many times that I actually forget how old I am. I think I’ll be 32 this year. I can’t get away with 28 anymore unfortunately.

Somewhere around August in between holiday blues and birthday countdowns the Mrs had a reminder about an up coming hospital appointment at the breast clinic.

“What’s this one for?”

“I have no idea” she replied. Note to selves: really must start taking this shit a bit more seriously.

We woke up the morning of the appointment a little hungover. Yes it was a Thursday but don’t judge. Working shifts sometimes means that our Saturday night can be midweek. Plus I had A LOT of birthday vodka to be drunk. It was only as we were walking to the hospital that we realised what day it was. 5th September. A whole year since that first appointment and biopsy.

“Maybe they’re throwing me an anniversary party?” The wife said.

“I hope there’s cake” I replied.

We checked in and assumed the position. I tried to find the book we first read when we were here a year ago but it wasn’t there. If it was I would have bought it. A weird way to mark the anniversary but in a way it would have been quite fitting.

After an eternity we were eventually called through to see the nurse. We went through the pleasantries. She explained the reason we were there was that the Mrs now had open access to the breast clinic. Basically for the next 5 years, the wife can contact them directly without the need for a referral from the GP. Which is a good thing really. It’s hard enough getting past the Rottweilers on reception let alone actually see a doctor.

“Do you have any appointments today please?”

“May I ask what’s wrong?”

“I need a GP referral”

“You can do that over the telephone to save you coming in”

“That’s perfect, thank you”

“No problem. I can get a GP to call you back in 2 weeks time”

“2 weeks? I need the referral to happen before then”

“That’s the earliest telephone appointment we’ve got”

“Ok fine I’ll come in and see the GP, can I have an appointment for today please?”

“Is it an emergency?”

“Not exactly”

“Our appointments today are for emergencies only”

“Ok it’s an emergency”

“May I ask what’s wrong?”

“Yes Barbara you may. I’m about to have a mental fucking breakdown just by being on the phone to you so be a dear and book me a fucking appointment!”

Not exactly word for word but more or less an actual account of a recent telephone call the Mrs had made.

After explaining the reason for today’s appointment and going over the time line of events since last year the nurse asked my wife a question that quite possibly became the unravelling of her.

“So.. how are you doing?”

Now I feel I need to let you in on a few things. My wife is one of the strongest people I know. She’s been a single parent to 2 boys. She’s had to live literally hand to mouth at times. She’s been homeless. And that’s before you even throw cancer into the mix. She doesn’t do crying. Crying is for husbands who secretly watch the notebook when the Mrs is at work…

But everyone has a breaking point.

That simple question made her realise that actually, she wasn’t doing quite so well at the moment. She cried. I cried (again this isn’t anything unusual). There had been quite a few issues going on with her work recently that haven’t been helping either.

“So how long did you have off work since you were diagnosed?” The nurse asked, when she could get a word inbetween sobs and snot.

“About 2 months”

“2 months?”

She seemed incredulous.

“Most women have up to year!”

The fact is that after 2 months the wife went down to half pay and 2 months after that she would have been on nil pay. Even now, if she goes sick she’s still on half pay. If you work for the government these days you literally cannot afford to be ill.

We sat with the nurse for about an hour and a half as the wife unloaded. She referred her for some counselling and strongly urged us to go and speak to the Macmillan nurses as well.

We left the clinic and walked over to where the Macmillan nurses are based.

“I’m just gonna pick up a few leaflets and then we’ll go” the wife said.

We had some leaflets in hand and were about to leave when a lovely lady kindly asked if we needed any help. Before I could say “nah, we’re fine thanks” the wife broke down again and we were being ushered into the quiet room for our second unexpected counselling session of the day.

“I feel like a fraud” she repeated, not for the first time.

Guilty because she ‘only’ had a lumpectomy rather than a mastectomy. Guilty because she never needed to have chemotherapy or radiotherapy. Guilty because other people have to endure so much more. Guilty because she’s ‘fine’ apparently. Guilty because she never lost her hair.

The nurse listened. She’d heard it all before. “At the end of the day Alison, you’ve had to sit in front of a consultant and be told you have cancer. Forget the treatments and everything that comes after, that in itself is a massive thing to have to come to terms with, plus the fact you have a rare cancer with a lot of uncertainty for the future and not many answers, so stop being so hard on yourself!”

A year ago when she was first diagnosed and we were presented with our shiny breast cancer ring binder, we were given details of various groups she could join.

“Bosom buddies?” She said at the time, “that sounds like my worst fucking nightmare!”

Not only now was she agreeing to a counselling referral but on the advice of this lovely nurse, was considering joining one of these groups.

I’ve been with the Mrs the whole way through this ordeal and I often describe things in regards to ‘us’, ‘we’, ‘our journey’ etc. Truth is, I can empathise but even I don’t fully understand what it must be like to be told you have cancer. It was a punch in the stomach for me, I can only imagine what it must have felt like for her.

“Maybe going to one of these groups is what you need babe?” I said.

“Yeah, I think your right” the Mrs agreed “ive got visions of it being like an AA meeting ‘Hi my name’s Ally and I’ve had cancer’ kind of set up”

“Possibly” I said “i think it’ll do you good. But just in case anyone asks, you drink no more than 14 units a week, just like we tell the doctor, ok? I don’t think we’re ready for judgement and AA just yet”.

Cancer really is a bit of a cunt. Not only does it affect your physical health but it can eat away at your mental health too. Something that the majority of us don’t really pay that much attention too. It changes you. What you thought was important before suddenly becomes meaningless. And people handle it in different ways. Us? We chose the vodka and piss taking route. That’s not for everyone. But however you choose to deal with it, eventually you come full circle and have to face the same things. It really is ok to NOT be ok.

So, a year down the line, what does the current future hold for us now? The first of yearly mammograms is almost upon us. The Mrs is really looking forward to having her tits squashed to resemble pancakes again (could you imagine a similar screening test for testicular cancer? Makes my eyes water even thinking about it). Then we eagerly await our 4 monthly trip to the Royal Marsden in November.

However, before all that there is an even bigger hurdle we have to face. A 5k inflatable run that drunk me thought would be a really good idea to sign up for. I still have no recollection of me ever agreeing to it and sober me thinks I am a massive twat. Maybe I should stick to the recommended 14 units per week instead of per day?

FML.

Ladies, gentlemen, friends, family, colleagues, acquaintances, people who like us, people who don’t…

First off.. I need to say thank you. To each and every one of you who took the time to read my blog. It took me a while to find my testicles and actually put it all ‘out there’ but now that it’s done, I.. in fact, we.. couldn’t be happier. The support we have had has been amazing, very much appreciated and extremely humbling. We aren’t ones for massive public displays of affection but seriously, from myself and the Mrs.. you guys fucking rock!

The last few week’s have pretty much gone by in a bit of a blur.

The eldest turned 18 and the middle one 17. Yet another reminder that we aren’t as young as we think and literally overnight have turned into those parents that think they are cool and still ‘down with it’ but the kids just find embarrassing! Saying that, we threw both a party/BBQ, which they eventually ditched to go out and we were still up partying when they got home. It’s called stamina kids. Or alcoholism. Either or.

The day after the party we were up, bleary eyed, fuzzy headed and ready to take part in pretty mudder race for life in aid of cancer research. When the Mrs was first diagnosed I remember saying..

“Does this mean we’ve got to sign up to those fun runs wearing pink wigs and fancy dress?”

“I don’t think it’s compulsory babe”.

I was dreading it but honestly? One of the best things I have done. The atmosphere is electric and looking around at all those other people, there for exactly the same reasons as you are, you actually can believe that one day, we can and will fucking beat this!

A big shout out has to go to Ma Perry who, as she approaches a special birthday this year (numbers not to be mentioned) also got stuck in and completed the whole course, despite being taken out and hurting her knee at the very end by a bloke and his size 12 hoofs. I know we were all there for the same thing but he did still get called a twat.

We literally laughed our way around the whole course along with everyone else and as we crawled out of the last mud pool, tears rolling down our faces, the wife turned to me and said “If I’d have laughed any harder in there I think I would’ve wet myself!”.. I couldn’t help but look back at the muddy water, soaking wet and think about every other woman who had thought the same thing and not been quite so lucky.

Over the next few weeks life pretty much went on as normal as we waited anxiously for our first x ray appointment at the Royal Marsden. The EHE foundation page that we belong to on Facebook has constantly got stories of people having various scans and check ups and often they refer to the period leading up to it as ‘scanxiety’. I think this sums it up pretty well if I’m honest.

I think we are positive people (all things considered), and we both knew that this appointment would be fine. It had to be. The annual Perry family holiday/piss up/tanning sesh was booked for a week later. As ever, our timing is impeccable. I’ve come to realise that you can be as positive as Mary Poppins on uppers and yet, the doubts still start to creep in. The wife had been getting a lot of pain in the boob recently. No obvious lumps but it did feel strange.

“It’s fine” the wife said “It’s probably just scar tissue from the op”

“Yeah I’m sure it is” I said “but last time you were convinced it was a cyst and look how that turned out”.

So the day quickly arrived and just happened to co-incide with the hottest day of the year since the beginning of time. As we boarded the train in Essex with ice water and a hip flask full of smirnoff (It’s important to stay hydrated on hot days) I said to the Mrs..

“Be prepared when the doors open at Fenchurch st. It’ll be like stepping into the fiery pits of hell”.

I couldn’t have been more accurate. As a born and bred Londoner myself, you get two types of people during extreme types of weather such as this. The hardened Londoner who is well prepared for the one day of the year that it all goes to shit. Not one sweat patch or deodorant stain to be found and make up put on with cement. Then there are the ones that didn’t get the memo about satans impending visit and have been caught completely off guard. Dripping with sweat and full of regret for deciding to wear corduroy jeans.

We made it to the Royal Marsden with plenty of time and it just so happens that there is a pub right outside the main outpatients department. I cannot reiterate how important it is to remain hydrated on days like this so it would have been rude not to. Although at £10 for 2 vodkas and 1 bottle of coke, that hip flask came in rather handy.

So, we checked in and were sent straight up to x ray. As mentioned before the plan for the next 2 year’s is regular chest x rays and if anything suspicious shows up then they’ll investigate further.

Hospital waiting rooms are interesting places. We love people watching and it does pass the time. On the right we had teenage Tracey. A face like a slapped arse and oozing resentment that she had to wait here with her visibly ill relative when she could be out in the sunshine trying to even out her bikini lines. Its a hard life Tracey. To the left we had conceited Colin. Who proceeded to tell us, the rest of the waiting room and anyone else who was listening that his diazepam was wearing off and he was the sickest person in the room.

We also met a lovely lady whilst we were there… for the purpose of this blog she will be known as Margaret. Moaning Margaret. Margaret is your typical NHS customer who will not pay private because, why should she? She’s paid in all her life, but will moan constantly about the inefficiency of the NHS.

“How dare they leave us waiting so long on a hot day like today! If we’d have gone private we would have been home by now”.

Build a bridge Margaret. Build a fucking bridge.

As it was they called us in first despite arriving later.

Moaning Margaret 0 – Perry’s 1.

Chest x ray done and the nurse took us into a room to wait for the consultant. Moaning Margaret had kept our mind busy for a little while but in that room it kind of all comes back. The what ifs, why’s etc etc. We’ve been here so many times receiving not so great news and despite the best positivity in the world you just never know.

We had a different consultant this time. A lovely lady who didn’t beat around the bush and straight away put us out of our misery.

“Chest x ray is all clear”.

Get. The. Fuck. In. Without even realising it, it’s like a huge weight has been lifted. We discussed the painful boob. The wife got it out (for about the millionth time. It’s like second nature now) and the consultant agreed that the pain and what we could feel was indeed scar tissue. We’d been at the hospital for just over an hour. If that isn’t the NHS at its finest then I don’t know what is.

Examination over, the consultant was happy and we were happy.

“Ok then Mrs Perry, we’ll see you again in 4 months”. Slight mood killer but we decided to let her off.

We half skipped out of there and stumbled into the nearest pizza express where we drank and stuffed our faces. Finally a post hospital celebration instead of the alternative we had become used to. I won’t lie, the scanxiety is still there and will no doubt get worse nearer to the next appointment but until then we will remain positive and if all else fails we’ll always have vodka.

Rather than heading straight back to Essex we had booked a little overnight stay at Casa Del Nan’s. And it was as we made our way there the Mrs had a slight wardrobe malfunction. In the searing heat and with the amount of steps we’d walked her bikini strings came loose and she almost lost her knickers halfway across London Bridge. Mr and Mrs Perry everyone. Lowering the cancer journey tone since 2018.

At first you think there’s no way I can even remember that, let alone pronounce it! Once you get used to it, it actually rolls off the tongue quite nicely.

And now for the education bit.. let’s break it down a little..

Hema – blood

Angio – blood vessel

Endo – inside

Thelia – cellular layer or surface

Oma – tumour

I blatantly stole the following quote off of someone else’s page but I think it explains perfectly, just what EHE actually is..

“A rare and unique cancer like no other that affects the lining of blood vessels. It can appear almost anywhere in the body but prefers the liver, lungs and bones. The cause is unknown and no proven treatment exists.”

It’s weird. When you think of cancer you think of treatments. Chemo. Radiotherapy. Operations. Immunotherapy. New drug trials. In this modern world the list is actually quite exhaustive. But to be told there is NO treatment that is proven to be effective, it’s actually quite scary. How can that be?? The reality is, that because this cancer is so rare we just don’t know enough about it. Yet. I can only imagine that this is what it was like years ago for the most common types of cancer as we know them now and fingers crossed, as we continue to advance medically we will one day know more. That is partly why I started this blog. To raise some awareness, tell our story and hopefully, despite cancer, make you laugh.

There was a lot of anxiety waiting for the results of the CT scan but thankfully it was all clear. We spent the next few weeks searching Google, desperately hunting down any information we could find when we stumbled across a Facebook page for the EHE foundation. Through them, we were recommended to a specialist at the Royal Marsden, Dr Robin Jones. Just knowing that there was a specialist in this type of cancer was a huge relief.

At our next appointment with the consultant at Southend we told him what we’d found out and asked him if he would refer us to this specialist. The look on his face was like all his Christmases had come at once! If I could read minds I would have sworn he was internally saying..

“Thank fuck for that! This woman and her rare cancer have been giving me sleepless nights!”

Within a matter of weeks we were on a train heading to South Kensington. Me and the wife love a little road trip so decided to make a day of it. I’m not sure it’s best practice to be sat in a bar drinking wine prior to a hospital appointment but when you can officially pull the ‘cancer’ card, you can pretty much get away with anything. Plus, when in Kensington it would be rude not to darling!.

The appointment was like a breath of fresh air. Finally someone knew what they were dealing with and how best to proceed. We cannot fault the breast clinic at Southend hospital. They have been absolutely amazing throughout this journey but we were now getting the answers we desperately wanted.

The wife was honest with them and said she felt like a fraud. The consultant laughed incredulously and reassured her that in no way should she ever feel like that. This cancer can be unpredictable and they do not take it any less seriously.

We left the Royal Marsden with a plan. They were happy with the clear margins from the lumpectomy and they were happy for Southend hospital to undertake yearly mammograms for the next 5 years. However, due to the primary tumour being found in the breast there concern is that it could easily spread to the lungs, so every 3 to 4 months they will do chest x rays at the royal Marsden. They call it surveillance. I call it an excuse to drink wine in a posh Kensington bar every few months.

We left the hospital and not wanting to break with tradition we headed to the pub for drinks and a debrief. It had to be a Wetherspoons though. Kensington is far out of our price range.

Normality in the Perry household sounds a lot like this. Papa bear gets up at 05.30 gets ready and leaves for work. Nanny bear comes over the road to look after the youngest cub and get her ready for school, whilst simultaneously reminding the teenage cubs to exit their pits. Nanny bear takes the youngest cub to school. Mama bear arrives home from night shift and collapses into bed, forgets to set alarm and almost forgets to pick up youngest cub. There’s some last minute dashing around for dinner and tomorrow’s packed lunches. Teenage cubs come home to their pits, leaving only to scout out food and grunt occasionally. Papa bear eventually gets home and spends the next hour with mama bear catching up and handing over. Mama bear gets ready and leaves for work, leaving papa bear starfished and asleep in bed.

It’s organised chaos but somehow we make it work. We had been told it could be at least two months before we had any further news so we jumped back into our hectic world and did our best to forget.

Anyone with or affected by cancer will tell you that this is easier said than done. It never goes away completely. It lurks. Waits. Unexpectedly tapping you on the shoulder one day saying “Hi! I’m still here, don’t be forgetting about me!”. As if you’d ever let us.

We were obviously very confused by this latest turn of events and naturally other people were as well. They had questions, as we did, unfortunately there were no answers. This is where we started to understand how complicated cancer can be. It’s not black and white. Its not always simple. It’s not all the same. It’s a sneaky little fucker. Some people, however you try and explain it, will never understand that.

“So what’s happening then?”

“We don’t know yet we are still waiting”

“But your not having chemo or radiotherapy so it can’t be that bad”

“I may still need treatment at some point, they don’t know yet”

“Oh.. I just don’t understand?!”

Neither do we Carol. Shockingly not all cancers come with a guaranteed bald head and a head scarf.

Christmas came, went and not too long after we welcomed in 2019 we had a call. Results were in.

This time we got the bus to the hospital. There was definitely going to be alcohol after this visit.

As we were led into the room our consultant was there, a healthcare assistant and the head of nursing. Interesting.

“We know what it is. It’s an extremely rare tumour. It’s not a ‘breast cancer’, it’s classed as a vascular cancer which just happens to have formed in the breast”

“Does it have a name?”

“Yes. It’s called epitheliod hemangioendothelioma”

Try saying that after a few vodkas.

Not for the first time, we had many questions, but again there weren’t really any answers he could give us.

The recommendations had come back that due to the rarity of this type of cancer/tumour being found in the breast, an urgent CT scan would be arranged to confirm that this was still a primary tumour and hadn’t spread from anywhere else. Great. Also, due to the type of cells that cause this tumour we were told that chemotherapy and radiotherapy were no longer an option as in the past they have proven to have had little to no effect against these types of cells. The good news however, was that compared to breast cancer, the prognosis was considered to be a lot better. They were still waiting for confirmation that everyone was still happy with the clear margins from the lumpectomy so it was goodbye for now and we’ll see you next to discuss the results from your CT.

The head nurse led us into the bad news room where we tried to digest this turn of events. In her own words…

“Your results and diagnosis came through on Friday and we have all spent the weekend researching it because no one here had ever heard of it”.

That really doesn’t inspire the greatest amount of confidence if I’m honest!

We were literally told to go away and Google (which goes against everything I tell my own patients) but that due to its rarity, there was little information to be found even on the Internet.

We hadn’t even left the breast clinic before the wife was on the Internet. The nurse was right, there wasn’t much to be found apart from it being very rare. So rare that it only accounts for 1% of the cancer population.

“I always knew I was unique” said the Mrs.

“Trust you to be difficult” I replied.

That afternoon we got drunk and went to see Benidorm live at the cliffs pavillion. We laughed so hard our ribs hurt and our jaws were aching. Fuck you cancer. Rare or not. Just absolutely fuck you 🖕

My now blue titted wife and I bimbled through the next few weeks with no routine or sense of time. All we could do was wait. Wait to heal. Wait for more results from the operation. Wait for a date from the Oncologist. Wait for treatment dates. And all the time your waiting you know that the clock is ticking and sometimes when you allow that thought to fester it can be the most scariest feeling in the world.

We planned and anticipated how things were going to change over the next few months. Chemotherapy was our biggest topic of conversation and we had so many questions we needed answering. How long would it take? Would it be given orally or IV? Could she return to work during? We were now having to consider the financial implications of everything as well. The Mrs had only been in her current job for 18 months and as much as they were very sympathetic and understanding, no one gets sick pay indefinitely.

We spoke about hair loss and the Mrs made me promise to buy her a wig.

“I’m gonna need an expensive one that doesn’t look cheap and tacky and it needs to match my hair colouring as well”

“You can have whatever you want babe as long as it ain’t a headscarf.. that just screams cancer”.

The Mrs had read up on radiotherapy and it looked like it would be a 4 week course consisting of 15 minutes of radiotherapy every morning, 5 days per week. Due to her age and diagnosis of triple negative cancer they were talking about possibly having an extra week at the end just to make sure.

“That’s ok” she said ” I’ll have radiotherapy in the morning then I can go to work afterwards and do a late shift, it’ll work out fine”.

Yes dear. I don’t anticipate any flaw to that plan at all. Bless her.

At our post op consultant appointment they were confident they had removed all of the cancer and the lymph nodes all tested negative for any spread. I think we were so elated by that news that we didn’t really take much notice when he said that they had sent it off for more tests. I vaguely remember him saying something like, it didn’t fit the standard pattern of triple negative breast cancer but again I wasn’t really listening. The only sour point of the meeting was that chemo and radiotherapy were still very much on the table. Despite the positive news, TNC can be a slippery, devious, sly little bugger and has a high rate of re-occurrence. What an absolute Tuesday.

Up until this point I have to commend the Mrs for how she had dealt with everything so far. She doesn’t do crying, especially not in public, therefore it’s usually just me who might witness this extremely rare event if and when it ever happens. She was (still is) strong enough for all of us and would often simply say..

“It is what it is, there’s not a lot I can do about it is there?”. Very true.

If anyone is the crier in our relationship, its me. Children in need, comic relief, watching ET… There’s always potential for a few drips. Add a wife with cancer and a couple of vodkas and I could turn into an emotional wreck.

As I’ve mentioned in a previous post, Friday is normally always results day, therefore you are always slightly on edge and if you ever receive a call with no caller ID, chances are it won’t be PPI. Our oncology appointment was booked for the following Tuesday and we weren’t expecting a call today.

“Hi Mrs Perry, we’ve had some more results come back and we’d like you to come in on Monday to discuss them.”

“Yeah that’s no problem, is everything ok?”

“Erm, I can’t really tell you much over the phone, its a bit rare and complicated, but we’ve cancelled your oncology appointment for Tuesday”.

Confused, anxious and worried would be an understatement as to how we felt that weekend. If they had cancelled the oncology appointment then surely that meant no treatment? What was so rare and complicated? If they had got it wrong and it wasn’t cancer after all surely they would have just told us on the phone and put us out of our misery? Was it suddenly worse than they first thought?

That was a lovely, chilled and relaxed weekend we had.

Monday afternoon came and we were back in the clinic with absolutely no idea how this was going to go.

In a nutshell… the pathologist had requested a second opinion as he had never seen anything like this cancer before. What they had originally believed to be triple negative breast cancer just wasn’t behaving in the normal typical way for those particular types of cancer cells. A preliminary report had come back suggesting it may not be breast cancer but a rare type of tumour instead.

Not for the first time since all of this had begun we were in shock. Dumbfounded. We had lots of questions but they had no answers.

“So it’s not breast cancer?”

“We believe it might not be a ‘breast’ cancer”

“So it’s still cancer?”.

“We think it might be a rare tumour”

“But your not sure?”

“No”

“Does it have a name?”

“Yes, but let’s wait until the reports come back”

“Could it still come back as breast cancer?”

“Possibly. Do you have any other questions?”

“Yes but it sounds like you haven’t got any answers?”

“No”

It was like talking to a politician. He neither wanted to confirm nor deny.

We left the clinic slightly bereft, confused and exhausted. Was this positive news? Worse news? Nobody knew which was the most frustrating thing. The next lot of results would probably take about 2 months to come through as they were now sending the pathology reports on to a third hospital for more tests. So for now, everything had been put on hold and it was time to try and carry on as normal.

As we drove home I reminded the wife of our upcoming mini break to Spain.

“At least you won’t be half bald when we go away”.

Every. Fucking. Cloud.

We spent the next few weeks in a minor state of panic. With all this cancer stuff taking up all our time recently, our up and coming cruise had taken a bit of a back burner. With the operation booked in for our return and no more hospital appointments it was time for holiday prep. This normally involves finding out the 4 year old has too many clothes, the wife doesn’t have enough shoes and at least one of the boys doesn’t have any holiday clothes that fit. Cue last minute online shops and trips to Primark.

The cruise was just what we all needed. It’s amazing how being in a different country makes things so easy to forget and waking up in a different port every day made it even easier. I think we all had our odd moments. Many an evening I would catch the wife on the balcony, appearing deep in thought watching the sun set on the horizon. However, the rule for the holiday was ‘the first person to mention cancer gets thrown overboard’.

We arrived back fresh, relaxed and ready to face the next set of challenges. Now most people would probably spend the night before their 7am start at the hospital chilling out, packing a bag but not us. We had a prior engagement to see Tina Turner up the West end. Bellies full with TGI’s we danced away in our seats and it might just have been me but, secretly hoped the show would never end.

The next day arrived and went as planned. Typically the Mrs was the last one to go down but I did manage to hit 15k steps that day going up and down the hospital. They were reluctant to discharge her initially, due to low blood pressure but she pulled the ‘my husband’s a paramedic’ card and they couldn’t get her out quick enough. As I waited for her to come out I was greeted by what I can only describe as, an extra from the walking dead. As well as the lumpectomy they had also removed some lymph nodes. In order to locate them they had to administer a blue dye which could turn the urine blue, leave a blue Mark on the breast and give the skin a general blue appearance. They weren’t joking. She looked like a Smurf risen from the dead.

Recovery started ok. Apart from now having a very noticeable blue tit (which can last for up to a year!), the wound was healing well and she was managing to do some light recommended exercises. Then, one by one, courtesy of the youngest member of the household, we all got the shits. Cancer, an operation, a blue tit and the shits… how’s your bloody luck?!

Not only does cancer disrupt people’s lives but it also forever taints possibly the best day of the week. Friday.

Friday is normally results day. The staff at the breast clinic discuss everyone in the morning before calling in their patients to either put them out of their misery or punch them in the stomach. (Not literally obviously). Even as a shift worker I used to love Fridays. Now I can’t help but think of all those people that are having their lives ripped apart when they should be getting ready to enjoy their weekend.

We knew we were coming in this Friday to find out for certain exactly what type of cancer we were dealing with and to find out the results from the MRI scan as to whether it had spread into the other breast . It’s only once your actually dealing with it that you realise how complicated cancer is. By this point we had already read our information ring binder from cover to cover and knew about the different types of breast cancer. One that responds to hormones, one that doesn’t, is it in the milk ducts or lobules… it’s fascinating how complicated and difficult breast cancer really is.

I’d say we were a little anxious about this meeting but in true Perry style we remained probably more upbeat than we should have been. Our go to, waiting room book of weird and wonderful facts was missing though. In hindsight that should have been an omen.

The woman in front was busy telling the woman next to her all about when she was due to start her chemotherapy and I remember saying to the Mrs “at least you won’t have to have chemo”.. ” No she said, I don’t think I could cope losing my hair”.

So, once again we were led into the room. Slightly non chalant, I’ll admit. Pleasantries over..

“So, the good news, it hasn’t spread into the other breast and it’s just the one tumour we are dealing with”. Awesome. We can deal with that.

“The biopsy has come back showing triple negative breast cancer grade 2 meaning it’s moderately aggressive”. Aggressive? That’s not the kind of vocabulary you want a consultant to use!

“So the plan is to remove the lump. Then you will need chemotherapy followed by radiotherapy”.

The second most scariest word after cancer, in my experience, is chemotherapy. Congratulations Doc, despite your well practiced shit sandwich you’ve still managed to take us by surprise.

Over the course of our journey we have come to realise that nothing about cancer is straight forward, plans change (constantly!) And nothing is ever completely off the table.

Not for the first time, we left the clinic in a bit of a blur and headed straight for the pub. All this cancer shit was starting to get more and more real.

Sometimes there is only one way to deal with another f**ked up Friday… “I’ll have 2 grey goose and diet cokes please and go easy on the coke”. Cheers.

One of the worst things about cancer is having to tell people. When you have to say things out loud it actually makes it seem more real. Also, strangely, it makes you feel guilty. Guilty about what, I’m not entirely sure but we felt awful telling people and possibly ruining their day. We felt bad that they now felt bad.

We decided not to shout it from the rooftops and tell just close family and friends. Some people we told we hadn’t seen for a long time and probably wouldn’t see them any time soon but felt they needed to know. Could you imagine meeting up a year down the line.. “Hi long time no see, how’s things?”.. “Yeah good thanks Susan, work, kids, cancer, the usual.. how are you?”. That’s just embarrassing.

Telling the kids was tough. The older ones are men of few words and to this day we are not entirely sure how it’s affected them but we got a couple of weeks worth of sympathy and tidy bedrooms before it was forgotten. Our breast cancer nurse told us to expect just a week so we were happy with that.

The youngest was 4 at the time so we just told her that mummy had a poorly booby. She went off to play and a little while later she came back and said “mummy, I’m really sorry that I gave you a poorly booby”. Heart breaking that in her little head she thought it was her fault.

The actual process of telling people took a lot longer than I thought it would. I could have just checked us into the breast clinic on Facebook with a ‘feeling anxious’ status followed by a worried look emoji but as much as I am a bit of a social media whore that just isn’t us. I don’t think I could’ve handled all the “are you ok hun?” Or “PM me”. No, I won’t PM you Susan. We’ve been Facebook friends since 2007 yet we’ve never spoken face to face.

In between dropping the cancer bomb onto people the wife had a follow up appointment with her GP. She needed a sick certificate for work, a follow up post diagnosis and also an exemption certificate. Apparently having cancer means free prescriptions for 5 years.. every cloud and all that! It was the same GP that she had initially seen back in the July/August. It was extremely unexpected but the GP started crying and hugging my wife telling her how sorry she was. Now some people find it poor practice that she didn’t refer my wife sooner to the breast clinic and she quite clearly felt guilty herself. Yes there is a case for that, however, even if she had done that initially, it wouldn’t have changed the outcome or treatment. GP’s, paramedics, nurses, consultants.. we are all human. Sometimes we get things right, sometimes we get it wrong and other times we are neither right nor wrong but just a little bit off. Its how we learn from these things that matter. If it now means that every woman or girl who has a lump in the breast gets an urgent referral from that GP then so be it. Better to focus on positives than negatives.

We actually got bored of telling people in the end. Partly because people had lots of questions that we didn’t know the answers to. In the end we’d just give them the shiny, new, breast cancer ring binder they’d given us at the clinic which now took pride of place on the mantelpiece and tell them to read it themselves.

In hindsight though, something we both agree on, is that we wouldn’t tell people so soon. Obviously there are people that need to be in the know from the beginning. You 100% need that support network but you also need time to come to terms with everything in your own head before you can worry about anyone else.

And sometimes it’s not fair on others either. I mean let’s face it, what do you say to someone that has just been diagnosed with cancer? Not a hell of a lot actually. It’s a bit like when someone dies. There’s nothing you can say that will make anything better or easier but as a general rule I’d probably steer clear of some of these corkers..

“You’ll be fine”.

I didn’t know you had a PHD as well as foretelling the future Susan?!

“If anyone is strong enough to deal with cancer it’s you”.

Erm… thanks?

“You need to stay positive!”

No shit Sherlock.

“You don’t look like you’ve got anything wrong with you”

Do you want to examine me or would you like my consultants number so you can verify?

“But you look so well!”

Oh I’m sorry.. next time I’ll shave my head and wear a headscarf.

I genuinely don’t believe that any of those things were said with any kind of malice but sometimes saying nothing is better than anything at all.

The following week was a bit of a whirlwind. There was an urgent MRI scan to check it hadn’t spread into the other breast. I couldn’t face going to work, the Mrs was signed off, so we went to lunch. A lot. Take away the cancer part and we could very much get used to this life of leisure. Well, until the money ran out or we became alcoholics.

The week leading up to the first diagnosis was a mixture of anticipation, dread, fear and very often, denial.

I work as a paramedic and there is nothing worse than hearing.. “well I checked my symptoms on Google.. “. Dr Google knows shag all. He will take the hurty toe that you’ve had for 5 years (which by they way has suddenly become unbearable after all these years at 3am. On a Saturday. Of course its acceptable to call 999 Susan. Have you heard of paracetamol?) and turn it into a brain tumour with a life expectancy of approximately 6 hours.

So what did I do? I was googling breast cancer quicker than you could say 999.

I found lots of positive, motivating stories about cancer, but for every positive story there was a negative one just crying out for me to click on and read.

The Saturday after our trip to the breast clinic, I was working a 12 hour day shift. I’d spent every spare second I had googling one negative cancer story after another. I felt compelled. I think I was still in denial and if I convinced myself enough that it would be positive for breast cancer then perhaps maybe it wouldn’t be? FYI, that doesn’t work.

We had been called to an elderly lady at a care home that had had a funny turn. I remember her being a lovely lady with plenty of stories to tell, but as is often the case with these kind of patients, she was very frank in telling us that she was ready to go. It’s a conversation I’ve often had with many of my older patients. My normal response being ” Well Elsie, your not going anywhere today if I can help it!”. This day was different. I had my first wobble. Suddenly the prospect of what we might be facing became all too real. I made my excuses to my crewmate and made my way back to the ambulance, trying not to hyperventilate.

After both walking around for a week like tits in a trance (pun intended) we were back in the waiting room of the breast clinic. This time we took things a bit more seriously.

I remember the Mrs saying the night before that she didn’t want the week to end. That’s exactly how I felt when they called us through. Let’s just turn around and walk out. Return to our little pre-cancer bubble, drinking sangria in the garden and forget this ever happened.

The consultant and nurse met us with gleaming smiles and professionalism but you could see in there eyes what was about to come. It was breast cancer.

Surprisingly it didn’t come as a complete shock. Deep down we both knew it was cancer all along but sometimes you just need that tiny little bit of hope to stop you having a complete mental breakdown.

Bad news it was cancer but the good news was that it was small. So small in fact that even the consultant seemed surprised it had been found this early! A plan was quickly put into place. Cut it out, a bit of radiotherapy, job done.

The consultant pencilled in a date for the operation that co-incided with our long awaited holiday at the end of the month. I’d already told the wife that if we had to cancel then so be it. It was a holiday. We could change or postpone it.

“No frigging way!” Was her reply. “I’ve waited too long for this holiday.. Cancer will just have to wait!”

That’s my wife ladies and gentlemen. Not even cancer can tell her what to do.

As it turns out they were happy to postpone the operation for a few weeks.

We were ushered into the bad news room (we nicknamed it that because whenever we went in there it was never anything but) with the breast cancer nurse where we had a little chat, some tears and a few giggles. If ever there can be a funny side to cancer then trust us to find it.

From the clinic we went straight to the pub. I made my way to the bar, blatantly pushing in front of people but I didn’t care. If ever two people needed a drink it was us and I wasn’t in the mood to wait for Doris to order four senior citizen cod and chips and then count out twenty quids worth of change.

Those double vodkas went down a treat. Funnily enough so did the next ones. And as we sat in that beer garden trying to make sense of everything, that was when we decided that this day would forever be known as f##ked up Friday. Cheers.