Realisation

Christmas 2014 for me, was about survival and recovering from chemo so I would be well enough for surgery. In my mind I had completed phase 1, I felt *lucky* to have made it that far, I had a little breather before getting my head down and ploughing through the next phase.

This year is different. For so many reasons. My body appears to be somewhat healed but my mind, well that's where it gets tricky. To say I jumped on the Christmas bandwagon is an understatement, I couldn't wait to get the tree up and fill the house with anything red/gold/tartan/things that twinkle, I have a "Santa stop here" sign, and penguins that appear to be skiing down my stairs. I also shopped, and shopped, and shopped. I had the best time, some days I would just wait for the post woman to come as I'd forgotten what I'd ordered and that in itself was quite fun. I even brought mince pies to leave out on Xmas eve.

I loved seeing everyone's pictures of fake Santa footprints, reindeer food, naughty elves, all the presents neatly placed under the tree. I loved seeing the kids faces when they opened their presents, the sheer excitement, not knowing what to open next, wanting to stop and play but also wanting to open some more. Then it hit me.

I will never need to put out a carrot for Rudolph, there will be no Santa boot stencil in our house, why exactly did I buy those mince pies? There's no little people waking up every hour to check if it's time to get up. It must be magical.

I try not to think about the future too much, well unless it creeps into my head. But it's hard not to at this time of year, new year. New start? Better year? What if it's more shit? What if 2016 is the same, or worse than 2014/2015, what if it's no different? What is there to look forward to? Hospital appointments? Scans? Results? Treatment? Anxiety? More bad news? More uncertainty?

I look at other people, I find myself staring, sometimes in a daze and not really listening to what they're saying. I envy them, all of them. Their lives, their jobs, their well fitting clothes, their homes, their rings, their families, their bumps, their hair, their bodies, their ability to be carefree, their sparkly eyes, eyes that aren't filled with sadness.

My most favourite month

December. I love it. I look forward to it all year, there's something so magical about it. 

People seem generally more happy, more willing to be silly, more social, more forgiving. 

I'm like a child who's eaten multi packs of skittles, this has now started to rub off on my nieces and nephew, I'd like to say I'm sorry, but I'm not (sorry Hollie!).

To say I've gone over board this year is quite an understatement,the house is full of decorations, I've even made a few myself....

 There are presents everywhere, in every room practically, the wrapping paper is co-ordinated, I even have stamps to print on the gift tags.

Charles and Eddie are out again in all their glory taking pride at the top of mine and Hollies trees #wouldILieToYou

The boys both have their advent calendars - which they are well happy about...

I've also managed to pack in as much as I can, in fact I think I have plans every day from now until Xmas day, why not? Actually I could have done with renting somewhere in London for the month! But then I guess I wouldn't be able to stay up with Rhian until stupid o'clock drinking champers and bailys watching people falling over and generally doing stupid stuff on you tube.... (Please search for melon face it's a fave).

I'm so excited to start the festivities - in fact it all kicks off today for a long weekend of doing tacky touristy things, standard Xmas visit to Liberties, dinner and xfactor, lunch with the bitches and pub quizzes. Then I have a

Cancer Xmas party, comedy, family time, escaping rooms, road trips, facials, snowballs, fizz, snow play, birthdays, nativity plays, meeting reindeers and Santa and loads of other utterly fabulous things. 

This is a far far cry from last year and I intend on enjoying every bloody second of it. 

X

It's likely to be bone mets

I woke up this morning with that horrible funny feeling in my stomach, you know the one - scan/results/game changer day, and if you don't, well, consider yourself very fortunate.

I decided that I wasn't going to be scared today, I would try a new approach, statistically I should be ok. Pelvis biopsy is ok, spine looked the same as the pelvis, spine had remained the same for 10 months, and that was after finishing chemo and still no change.

This new found comfidence lasted right up until I was inside the MRI. Then all sorts went through my head. Like, the fact that they were all huddled behind a screen looking at my images, knowing if it was or wasn't, most likely doing the sympathetic head tilt, saying things like Awh she's so young, she's been through enough etc etc. This went on for around 45 minutes.

Then the bed moved out of the tube and there was a voice in my ear that said "Aimee, you're going to have to pop back in for some more images." Obviously this is because they've found something really really bad.

Luckily I had this on tap for the next 3 hours whilst we waited for the results

We had to sit in a huge out patient waiting room, with over 30 clinics, and wait for my number to be called out over the speaker. 1671, that was my number, they're not in any order, completely random,just to add to the anxiety.

Finally, at 16:20 my number was called and we got to go through the doors into a smaller waiting room. Panic was now setting in, everyone was being called before me. This was obviously so that they could free everyone up to be in the room with me. Finally my name was called by a doctor I'd not met before, my heart literally stopped when I saw a girl sitting in the room, probably about my age, I assumed that she was some sort of Macmillan nurse. She wasn't, she was a medical student. Phew.

The doctor then checked if I'd had an MRI today, I said yes, and he got it up on the screen and began reading. I couldn't bring myself to look, Arron put his hand on my shoulder and squeezed it. The doctor asked if anything had changed since my biopsy - pain/discomfort etc, I said no, he asked if I was sure, I said yes, then I felt like I was going to pass out. Tears started falling down my cheeks, the doctor gave me a tissue, the medical student did the head tilt, and the doctor apologised for taking so long.

For a slight moment after that I felt relief, he grabbed my hands and asked if I wanted the good news. The lesion on my pelvis hadn't changed. I was instantly confused, I explained that this had already come back clear? He said we'll sort of, the bit they tested was clear. Arron made him confirm that this was the whole point of a CT guided biopsy - to make sure that they got the right place. Arse covering springs to mind.

He then began to talk about my spine. He explained that this also hadn't changed since 2014, which is good but he felt that it was likely to be bone metastasis. No, this wasn't supposed to be happening. The medical student couldn't even look at me now. 

Unfortunately they can't biopsy my spine, which we already knew, wasn't this the whole point of coming here today for a more detailed MRI, to give a definitive result? an MRI which isn't generally available at "normal" hospitals? Apparently it is but the scan today didn't show any more detail than the ones I've had in the past.

This all has to go to MDT to be discussed, as this is his opinion of what he is seeing on the scan today. It is also of his opinion that the outcome will be to carry on with the monthly denousab injections (bone juice) and have an MRI every 6 months. If the leisons to my pelvis change then I will have to go back and see them and discuss the possibility of another biopsy. So in other words, he couldn't tell me that it wasn't bone mets, he doesn't think that they will ever be able to say that, I have to live 6 months at a time and hope that nothing changes. If anything does change -get bigger, multiplies or fractures then it will be confirmed as bone mets. That was todays opinion. I wonder what would have been said if someone else had interpretated today's scan?

The MDT is in 13 days, I asked if I would get a phone call, he said he wasn't sure, I might, but they will be in touch somehow. I just wanted to get out of that room as quickly as I could.

And then I stood in the corridor with Arron telling me to look at him and breath, whilst various health care professionals walked past without saying a word. And now I have to wait, probably so that I can be told the same thing as I was today. I'm giving up on hope, I was given hope in July and now I'm back at square one.

Apparently the treatment I'm currently having is the same as what it would be if it was 100% bone mets so it doesn't change anything. That's the part that these doctors don't understand, I'm 33, it changes absolutely everything.

Here we go again

Is it or isn't it? Well I guess I should find out once and for all tomorrow…

2014

bone scan clear

CT clear but picked up something on my spine so I had an MRI

MRI clear (classed as wear/tear)

2015 finished active treatment

Bone scan clear 

CT showed same on my spine and also pelvis 

MRI confirmed these findings

Diagnosed with bone mets and commenced on monthly denosumab bone injections, awaiting bone biopsy of pelvis.

Pelvis biopsy came back clear (benign bony island) imaging of my spine looks the same as my pelvis.

Decision was left to me if I wanted a more detailed/specialist MRI of my spine to hopefully give me a definitive result as they are unable to obtain a biopsy of the spine (phew). The consultant was very blasé and reiterated that it does indeed look the same as my pelvis.

I decided to have the MRI.

It's tomorrow and I get the results the SAME DAY.

Crap.

Part of me wishes that I'd accepted what they told me and lived happily ever after but then the other part of me wonders what would've happened if I'd have accepted The bone metastases diagnosis and not had that biopsy my life now would be very different. 

Sigh.

I have re-read my own blog about scanxiety and yes tomorrow won't change anything, it will inform us, BUT I  still have that ball of anxiety in the back of my throat. 

What I wouldn't give to be working a 12 hour shift tomorrow.

This deserves a double finger....

I wish

I wish the sadness would stop

I wish there were no more tears

I wish the anxiety would go

I wish the pain would stop

I wish my girls could all be healthy 

I wish there were no more scans

I wish there were tiny feet

I wish the dark cloud looming above would disappear 

I wish others would appreciate all that they have and are able to do

I wish my heart felt lighter

I wish the fear would go

I wish i could once again be care free

I wish I could remember what that felt like

I wish you'd left me alone

One

5th November

Today should be a fabulous day, today should be filled with smiles and laughter. 

We should have a cake, and a candle, balloons and presents.

Another first, to go along side your first smile, first tooth, first word, first step. But there are no firsts, there will never be any firsts.

Tonight the sky will be a blanket of lights, beautiful, pretty, spectacular lights.... Ironic that a light inside me has been dimmed, forever.

And breathe

I'm in Mexico, with Arron having THE best time. It's actually 22:28pm and we're in bed, Arrons fast a sleep, I've been watching CNN (I'm a secret USA news whore) and it's perfect, and I never ever thought we'd get here.

Today there was a storm, most people in the resort looked pretty f**ked off. I loved it. We had breakfast (Arron had coffee with a shed load of Bailys, then we tried a Bloody Mary - note to self -do not try that again, cold tomato soup with ice springs to mind Urgh), 

then we sat at the bar which looks out onto the pool and sea and we watched the storm, oh and had a couple of cocktails....Miami vice.... Bellini's..... frozen daiquiri's....mud slide's.....mojitos 

And the odd far eastern milky beverage (for me)

And basically for the rest of the day we ate pretzels, did a lot of people watching (which is code for taking the piss out of people), but generally just smiling. And then the sun came out 

Oh and Arron met the turtles....

Solidarity

Don't get me wrong I'm not thankful for C, not even a little bit and if I could change the last 18 months then I would, in a heart beat. BUT I am so greatful that these girls came into my life. 

Thrust into a dark place I'd never felt so alone, my life as I knew it had gone, no one understood, as hard as they tried they couldn't. Everyone else could go to bed at night and forget about C, no one else woke up in the middle of the night (having spent hours trying to sleep) preying it was a bad dream then having their stomachs turn when they realise, yep you have it, yep there's a possibility that you might die.

Then I met 6 fabulous gorgeous women who turned this crap around. There aren't enough words, these women have been holding my hand throughout. I wish I could see our first conversation but there are around 30k messages and I can't skip to the beginning, no doubt kt was something explicit and piss taking. We certainly thought (and think)that we're kool with a K -Andreas daughter however has a different opinion....

I don't think a day has gone by where we haven't spoke, we talk all day and night and through dark times it's all through the night. I can say anything to them and they get it, there's no filter, there's no trying to put a good spin on things, well, sometimes there is, if we're feeling particularly bitchy. It's a private little world and I can't imagine my life without them.

It's rarely doom and gloom, in fact it's quite the opposite, during active treatment we shared ALOT of pictures, some, apparently were quite hard to determine what they were, cough Andrea...I had a reaction to radiotheraphy and was trying to take a picture of my chest when the camera went off too quickly and took a picture of my kitchen floor... Andrea however thought that I'd reacted so badly I turned into ceramic tiles...

Still makes me laugh... So glad I'm not the only "blonde" of the group....

Tattoos are discussed quite frequently-to begin with we had trouble deciding on the right one...

There were a few contenders and Rebecca has kick started it for us, I'm still debating whether to change my name..

Every hospital appointment/scan is discussed, even whilst in the waiting room, I really don't know what I would do without them,

They were the first people I told about my "bone mets", I knew they would know what to say and I knew that they would make things ok,

In fact seconds after sending this I got a call from Rosie.

Rosie and Jojo, we miss them every day, tears are falling now. I cherish our memories and I'm so thankful that they were a part of my life. 

I guess this proves that you can have more than one soul mate x

Things they never tell you about...radiotherapy

After having 6 months of chemo, and 3 months getting over a double mx I saw radiotheraphy as a bit of a wind down to treatment. This is surely the easy bit?

I was told that I would have 15 sessions every day (Monday-Friday), I'd read about other women having 20+ sessions and so I asked my oncologist to give me the maximum, basically all of my other treatment had been hard core so why not finish it that way? Apparently it doesn't work like that! It's the same amount just spread over a longer period. That's me told. I didn't have "boosters" either, not sure if they only give those to women who've had a lumpectomy.

So first I had an information and tattoo  appointment, my first ever tattoo. In order to line me up I had a CT scan, which actually is nothing like a regular CT scan -so no IV access required, it's actually very misleading! I felt like Catherine Zeta Jones in entrapment -lasers everywhere as everything needs to be precise. Easy peezy.

Next up my fabulous tattoos, 4 bloody dots which now look green -think sailor tattoos of the 60's/70's, reiterating that cancer IS NOT sexy. One one each side of my rib cage, one in the centre of my chest and one just above my armpit (had to get my phone torch out then and check where it was as I'm lying in bed-funny how you get used to strange things that happen to your body!).

I'm hoping to maybe get 1 or 2 covered up with a real life tattoo, can't have the 2 on cancer side but certainly the centre one and right rib cage -I'm open to suggestions by the way -I'm just not a pink ribbon / brave / stronger kind of gal.

I then saw a lovely nurse who went through the do's and dont's, and gave me a copy of the consent form I'd signed.

In summary I was told to wear loose clothing (preferably cotton), not to use deodorant, shower gel or perfume -excellent so, no only did I look like shit I would also smell bloody awful too.....

Tiredness, chemo tiredness was pretty bad but this is on a whole new level. -exhaustion.

Keep an eye out for open wounds/rash etc, remembering that this area is still numb from surgery so have a good old look in the mirror daily.

To begin with I was told to use aqueous cream, I slapped it on before and after rads but for some reason I ended up looking like this...

Looks worse than it actually was but maybe that's because I'm still numb? Quick trip To the doctors for some steroid cream and a new script for E45 and within DAYS it went back to normal (phew)

My hospital gown of choice was purple -just don't do as I did and wear a dress with tights -not unless you want everyone to see your arse.....

It really is nothing to worry about, just lie down, relax, block out the noise and plan your next holiday.....

Things they never told you about post op double mx

Right, I'm not claiming to know in the ins and outs of all breast surgery, this is my perspective of having a double mastectomy, and the actual surgery wasn't half as bad as I'd built it up to be..well after chemo, you can do anything.

Prep

Having just finished chemo I was still bald, everywhere and so no need to shave/wax (bonus), I did however have to draw on my brows. Rhian sent me a gorgeous package of old school PJ's (button down front to get on and off without having to lift my arms), big baggy vest tops, slip on slippers (no backs = no bending down to put on), and a white waffle dressing gown (get in, have always wanted one but could never find one).

I was due to stay in for 1 night, they did say that had I have not just had chemo I might have been in and out in one day. 

Overnight essentials

Clean pants (I wasn't catheterised and was terrified about peeing myself - I didn't thank god).

Face wipes

Eyebrow pencil (looks like mine got smudged during the op-not a good look)

Lip salve 

Tissues

Phone charger

Throat sweets / mints

Heart shaped pillow -for under your arm pit **must buy**

All current meds you're taking

For tea lovers -take a big mug in with you as you only get 2 mouthfuls from hospital cups....

I think that's it, to be honest it wasn't that bad, I think a pain wise it's worse if you have reconstruction. Although saying that don't let them fob you off with paracetamol get something A bit stronger like codiene.

Not sure what was so funny, maybe I'd just looked in the mirror....

Discharge

I spent the first few days in bed and so I kept my gorgeous stockings on, don't let the hospital throw them away if you're anything like me you'll be laid up for at least a week and not really doing much and certainly not moving around. My ankles started to swell so I would recommend a foot stall or a poof see below-champagne optional but Highly recommended

And Who knew that the stockings now come in a dark blue colour, who ever said that cancer isn't sexy…

Me and my boyfriend decided that post op it would be better for us to stay at my parents as there would be more people around to help look after me. There are also a few spare beds and I would recommend that unless you have two double beds together you sleep on your own. 

I did ALOT of lying around watching TV, invest in Netflix -money well spent 

I would also recommend investing in a Bolster pillow, mine cost under £10 from eBay but to be honest I would've paid five times that, if like me you like to sleep on your side you can forget it, sorry, but having 50-100 pillows on your bed certainly helps...

What your left with 

Not sure if it's been a nurse or just that I'm weird but I was actually pleased with how it looked, especially the pen marks, I will let you decide what the T stands for…

The dressings stayed on for a few weeks until I went back to the hospital. Yep this means but you can't really have a shower and definitely not a bath so invest in some nice flannels and baby wipes, thank god I didn't have any hair to wash ...every cloud and all....

The drains

Okay so they're not great bit of a pain especially if you're clumsy like me, and I have a boyfriend who likes to lean on them and therefore tries to accidentally remove them, ouch.

And a little tip is to get some gift bags and carry them around in them, my sister got me these little beauts

Hospitals vary but I had a district nurse come out most days and check that they were training okay and would replace the bottle if needed.

Try not to get them mixed up with a red berry cooler.... Can't imagine it would taste very nice

Having them removed isn't as bad as you think partly because your still pretty numb, again I'm weird, I quite liked it, you can sort of feel it a little bit coming out, not painful, but I won't go on about that too much. And once that out it feels amazing, you're free!

I had a little bit of Seroma which you can see above but I found that the more mobile I was it soon went. And I finally managed to get all the pen mark off with help from Rhian and some nail varnish remover. The picture below is about 10 days post op, healing nicely.

I got given a book of exercises to do very hard at first but keep going it does get easier and don't give up on your end up with limited movement in your arm and even Cording, which lets face it isn't attractive and god knows we don't need that on top of everything else...

To begin with I was completely numb to my cancer/node removal side, which is pretty strange, think going to the dentist numb but on the top of your arm and across your chest. To be fair they did explain this to me and also said that it will feel like pins and needles once the nerves  start knitting back together, it's more annoying than anything else, as is the itching which is hard to describe because your arm is numb and so scratching doesn't help  - very strange. 

Lifting is a big no-no which basically means that everybody else has to do everything for you - bonus. My very thoughtful boyfriend got me these little milk bottles to save me lifting a big jug of milk for my 15 cups of tea a day 

I think that I healed quite well and my scars aren't half as bad as I thought they would be but then again you don't really see such things very often, One thing I wasn't prepared for was that my chest actually goes inwards now.

The picture above was taken last week and so is eight months post surgery, ignore the fake tan wearing off, and you can see that where my skin is darker that's from radiotherapy, but all in all not too bad. Actually I feel a bit thinner now!

Shopping

I used to love shopping, it could've been put down on my CV as a hobby, not so much any more. For the first few months after surgery it was a massive pain in the arse. Having limited movement in your arm teamed with a small changing room plus a wig and hot sweats oh and of course no tits, does not make for a nice day out shopping. 

Then there's the post op bras on offer.... Not very nice on the eye, especially not for someone in their early 30's, and I didn't get given one from the hospital either, guess I look like the kind of Person who can blow £20 -£30 on a bra.... And £60 on a swimming costume/bikini.

I think these marketing teams needs a re-vamp, SOME OF US ARE STILL IN OUR PRIME. Who knew that you could even buy nightwear ?? They certainly didn't tell me that I had to bloody sleep with my softies/prosthesis in place.....

Sorry, I take it back, of course they're more expensive, it's the EXTRA material ....

It's my birthday at the end of this month, I think I'll add this one to my list...

I did get given a set of softies on discharge, the nurse couldn't believe that I wanted the smallest ones, and thought I should go larger now that I had the opportunity. I was a 34A and perfectly happy with my little ones, well until they turned on me and tried to kill me. I remember looking at her and thinking, I have no hair, no eyebrows, no eyelashes,  I still have a steroid moon face and now my boobs have been chopped off, I couldn't feel less like myself if I tried, so why would I want to change my cup size? Plus non of my clothes would fit!! 

Once healed I was given my prosthesis, the A cup didn't sit right, just looked awful, and so I took the B. Not a great move, far too big for me, and personally the prosthesis are too heavy and get too hot against my skin -plus I feel like Mrs Doubtfire in them. I think I've worn them twice. 

Actually the ones I wear the most are my air boobies which were donated by Kaz (awesome thank you). Can't even feel them -hard to believe I know been as they contain nothing but air....

I also "like" my softies, pretty small, light and perky! These are what were given to me on the ward after the op,

Grams also knitted me some knockers, they're amazing, so soft and comfortable, probably the only ones i can wear all day and night, think I need a smaller cup size though #pam. But when I wear these bad boys there's no doubt that I look like a woman!

And I think that's all I can really say about that!

Next up, radiotherapy.....