In the space of just one week my whole life has changed. It all happened one very normal day, just over a week ago, when someone dropped the C bomb.
Cancer.
Ok so let's rewind to that day and take this epic tale (you may need a cup of tea and some snacks as it's a long one!) from the beginning. I'd gone to see my doctor about... okay, so also a little warning here that things may get a little graphic so if you're gonna freak out or be squeamish - stop reading and go pin something fluffy to a board or something!
Still with me? Ok so, I was at my doctors to show her a very little dry patch, which had appeared on my boob, the nipple to be precise. It had been there, not really doing anything, for a few months so it was time to get it sorted. I assumed it was eczema or maybe a reaction to something, but my doc didn't like the look of it so referred me to a specialist. That was it, no other weird symptoms, no big lumps. No pain. No big weird green fungus with a little sign that read "Danger - keep back - Grrrrrr". It was just a small dry patch, mad really.
Two days later I was sat with Professor M, my specialist. He'd just spent quite a bit of time prodding and poking my boob and didn't have a happy look on his face. He had "concerns" and suspected it might be something more nasty than just a dry patch, so wanted me to go in to hospital for some more tests.
I tried to remain calm but walked out of there shaking like a leaf. This was potentially really serious sh*t. So I did what all mature 32-year-old grown-ups do, I called my mum and burst into tears. Now a word on mum, she is by far the best mum in the world. Sorry but it's a fact. A point proven by her reaction to my news - at 10am she left work, by 10.28am she was on a train to London with nothing but some knickers and her makeup bag! By 2pm we were sat in my garden drinking wine - again, proof that she is the best mum in the world. If we're gonna face a crisis lets at least do it with a nice glass of wine in our hands!
The next morning I found myself at hospital, with absolutely no idea what to expect. In a nutshell it was a pretty horrific day.
Now being a spritely 30-something I've never had a mammogram before so when they clamped my poor boobs into this giant machine and proceeded to squeeze them into flat little pancakes using what can only be described as a winch like torture device, I was pretty shaken up. The fact that they had to do this two more times, two different ways, didn't help either. Seriously, girls, you have know idea how painful that machine is - just try really, really squishing your boobs flat between your hands, you can't do it!! Because they are large squishy boobs, they aren't meant to be flattened down into pancakes, it's painful and just wrong?!!
After the pancake boob machine I then moved on to the ultrasound room. This essentially involved my boob being covered in jelly and explored back and forth with some kind of joystick thing (calm down boys!). The TV screen didn't give anything away, not that I knew what might look weird, I guess I was expecting some kind of "ta da" moment. Perhaps a big C shaped dot smiling back at us....
But as far as I could tell it was just a very fuzzy picture with loads of black and white, well, fuzzy stuff. Luckily the radiologist understood the fuzzy pictures and seemed to know what he was doing. Either that or he was just having a great time playing with the joystick and my jellied boob?!
After all that... (oh yes it goes on - please feel free to get refreshments, have a loo break, as I said it's a pretty epic tale!)...I was told that they'd seen some calcium spots on the mammogram and that the ultrasound just "didn't look right" - so they wanted to do the biopsy. I don't mind admitting, I'd gone from mildly frightened to bloody terrified in just a few short hours. But I was determined to hold it together, be a tough cookie and just get through it. DO NOT CRY, was pretty much my mantra all day, that and "oh fuck, oh fuck, oh fuckety fuck fuck!"
For the biopsy I had to go back into the boob pancake torture machine. You can imagine my joy at that news. This time it wouldn't be over in 5 minutes, instead I'd be stuck, literally stuck in by my squashed boob, for 30 agonising minutes. If that wasn't enough pain to contend with, they would then stick a bloody great needle into my boob to extract some samples. I'll spare you any more details suffice as to say it was one of the most painful, whole body shaking with fear, things I've ever had to endure. But endure it I did.
I remember laughing most of the way through like some kind of crazy, pain hungry lunatic who actually enjoys having their bits squeezed and stabbed?! Um no, not really, definitely not. I think I just went a bit mad with the shock of it all. Laughing hysterically and talking jibberish a million miles an hour while someone stabs your boob with a big needle maybe isn't the normal reaction, but that's what happened.
The weird thing is they describe in graphic detail everything they're about to do, so you get this running commentary of escalating horror described to you. "First we'll put your breast into the vice machine to achieve flat pancake status, then we'll leave it in there for about oooohhh five minutes or so, just to check it's as flat as possible and really, really painful. Then we'll move on to stage two which will involve needles, bloody big needles, which we'll stick into your boob, wiggle about a bit, while the pancake machine make loads of scary noises, then we'll drag it back out. But it doesn't stop there, oh no, just you wait! Just when you think we're done, we'll do it all over again!! ...Oh and then we'll stamp on your big toe, poke you in the eye, give you a Chinese burn and carve your nose off with a blunt spoon...what fun...!
By this point I was a shaking mess. Serious head to toe shakes like some kind of pneumatic drilling machine. I couldn't stop, even my teeth were chattering. I think my body was freaking out - which was fair enough. Back in the waiting room I was given some hot chocolate, which I promptly spilt everywhere such was the shaking frenzy, and some more biscuits to stop me from passing out.
So there we go. The tests were done and so we just had to wait. And wait we did, until one very normal afternoon, an afternoon that turned out to be not so normal afterall. If you haven't guessed the ending by now, this was the day they confirmed I have breast cancer.
Yeap. Breast cancer. Me. Wow. Weirdly I was pretty calm when they explained everything, I guess I sort of knew from the tests that it was coming but still nothing really prepares you for that moment, that moment when someone says "You have cancer". FUCK. It's a total and utter head fuck. Pure and simple.
The hilarious thing is that the cancer I have is quite rare and a lot of people wrongly assume only old people get it, which makes you feel about 105 when they tell you this. Oh by the way you have cancer, you have cancer for old people....yeap, you are just old, with cancer....nice.
It's officially called Pagets disease and yes a lot of old women get it. But so do younger women and it's regularly missed by GPs who wrongly assume it can't be anything more serious than eczema - but it's not. That small dry patch can mean something much, much more serious. So girls, please don't ever ignore your boobs, if anything and I mean ANYTHING changes get to that doctor and insist on a second opinion - it's so important.
An hour after they'd broken the news I was down in the MRI room waiting to be scanned to see if the cancer had spread to the other breast or anywhere else. For those of you who've never had an MRI before it's basically like getting inside a giant polo mint, being in a seriously uncomfortable position for about 30 minutes whilst a whole orchestra of seriously loud noises, beeps, vibrations and bangs kick off all around you. And you can't move. At all.
Now I've had an MRI before so thought I knew what to expect. But because they were scanning my breasts I got introduced to what I quickly renamed as "the milking machine". It looked like an MRI in every possible way, giant polo tube - check, big loud noises - check. But there, on the metal plate were two quite big holes. Yeap you guessed it, I was to lie on my front and stick my boobs into those holes, just letting them dangle down, like some oversized dairy cow - for 30 minutes. After being told I had cancer. So there I was, inside the milking machine trying with every fibre of my being not to completely and utterly freak out.
I got through it by counting. Counting, a lot actually. Large bouncy, animated numbers jumped about in my head whilst the small yapping toy dog (you know the ones you see in Hamleys) "bark, bark, bark" moved around my body. Nope I hadn't lost it completely, as part of the mind distraction I started to try and identify the noises, so we had the toy dog and his yapping, the big bass drum - which made me think I was in a rave, the vibrations - which I tried to imagine were relaxing in some way (absolutely not btw!) and the loud continuous humming which sounded like a flock of bees attacking a tambourine?!
Before I'd completely lost my marbles it was done. And I was allowed out. Out of the polo milking tube, out of the hospital and finally allowed to let out all of my emotions. And out they came. I cried my eyes out. Sobbed. For hours.
I had cancer. Proper bloody cancer. And soon I'd find out if it had spread anywhere else. Jesus. How the hell do you get over the shock of that?? The truth is, you don't. I don't think I ever will.
Thankfully we got the results back and I'm pleased, sorry that should be - fucking overjoyed, to say it hasn't spread and it's not invasive, which is amazing, amazing news. This time I cried with relief!
So all they have to do now is get rid of it. And that's the next battle. The operation. The operation to take my cancer out - along with most of my breast. How the hell do you prepare for that?
Pour me a large glass of wine and we'll take it from there.....
Follow Jodie Butt on Twitter: www.twitter.com/missbutterfly
Ciaran Devane: Age Is a Number Not an Excuse to Treat Older Cancer Patients Differently
Erin Smith: What My Daughter's Cancer Diagnosis Taught Me About Life
Darryle Pollack: Surviving Cancer: It's Complicated
Dr. Douglas Fields: Cancer Related to Risk of Heart Attack and Suicide
Cancer diagnosis: 11 tips for coping - MayoClinic.com
Cancer - Symptoms, Diagnosis, Treatment of Cancer - NY Times ...
Cancer Diagnosis - Stanford Cancer Center - Stanford University
My mother and sister both had cancer, and both had chemo therapy. A nice story for you. My sister's hair was falling out, so she picked a wig at the hospital; and it near enough matched her own hairIt was synthetic, and far too much of it. They told her to take it to her hairdresser's and ask her hairdresser to "distress it" She went to her hairdresser, and was told to come back at 6.00clock, which she duly did.
The hairdresser closed the shop for her and did a great job of "distressing" the wig. When she had finished, my sister asked the hairdresser how much she owed her. The hairdresser pointed at her price list on the wall and said. "You tell me where the word Distress is on that list"
It's the little kindnesses that count
Use all treatments you can but there is one absolute piece of advice I would give you.
Never, ever fall into the trap of thinking that with positive thoughts you can fight this disease. Enjoy life and do what you can, but that belief is the real Dark Side. You will only ever hear from people who recovered talk this way.
If things don't work out as well as they could, you might add to your burden by thinking that you have not been good enough, or done enough positive thinking. My wife suffered terribly from this issue, adding to the overall pain of her situation, and I wanted to do serious physical harm to the people who encouraged her in this regard. They are charlatans.
In the end it is still cancer, it still has the ability to kill. Breast cancer is the easiest treated and therefore there are more survivors (thankfully), I think the time when you need most positivity from those around you is when youre new to it, when you've heard those words "you have cancer" you sink so low, you htink the worst, a little bit of positivity goes a long way.
In the end I never had the chance to say goodbye to my wife, or her wishes for our son, when we could have a clear conversation, I did the day she died but she was so weak that she could not speak clearly enough or do anything other than blink.
I know that it was not my journey to suffer the actual disease, but dealing with a loved one and supporting them in their decisions about how to face the disease and their mortality is incredibly demanding, tough and especially difficult when you are dealing with a future without the person you love and they will not acknowledge that.
At the first sign of something not being right get it checked. Everyone do this.
My wife died at 38 from bowel cancer - detected after it spread. In the last month, after twelve months of radiation, chemo and then abandoning these because of the burns and pain and the extremely poor prognosis, she was needing just over a gram of morphine a day for the pain and weighed 32kg. Any sort of short term discomfort is worth avoiding the absolute agony of letting something go.
And the only memory our son has of his mum (he was 3 when she died) is of "mummy needing to do a poo and a wee in the loungeroom" - me changing her colostomy bag and emptying the catheter bag because she couldn't move.
Get things checked out as soon as you notice something.
No eating or self-betterment advice from me: it wasn't your fault.
It is very important to talk about it - it is quite amazing how many people cannot say 'cancer' or have any concept of how many different sorts and different treatments there are and how everyone reacts more, less and differently. Talking helps us to face all the possibilities, too, I think.
Good luck - you will need some of that too, I expect.