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.....

"It's Mom....don't panic"

Just when you seem to be getting your head above water, just above, something always happens. Something catastrophic everything stops still. Your heart starts pounding and jumps to the back of your throat. 

Mom called, immediately you realise something's wrong, you hold your breath. "Don't panic" she says, and your heart stops. "Dads been rushed into hospital, he has a tear in his aorta, he's got to have surgery." Oh my god, oh my god. "Oh and we're still in Bristol, (120 miles away). 

Shit.

And so once again we all pulled together, we're getting quite good at this as a family. Arron quickly went into organising mode (previously known as Captain Chemo), and we sped off down the motorway.

My mom called about an hour later and said that dad wanted to speak to us all, he said he was about to go down to theatre, asked us to look after mom, and that he loved us all very much. Me, Adam and Hollie just sat still, how can this be happening? we'd all been out for the day less than 48 hours ago at a charity day, and we were about to book a big family holiday for 3 weeks time, how on earth did this happen? We decided to do the only sensible thing and turn the music up loud and pretend it wasn't happening, it resembled the scene from stepbrothers....

It's safe to say that as we arrived at thehospital my mom was in a state of panic, in true Fletcher style everyone had their own opinions as to what we should do, things got heated, moms voice went all high pitched and we all had a time out.

My dad would be in theatre for 7-8 hours, he was high risk for having a stroke and the surgeons explained that this might cause his kidney to fail, the kidney he'd received only 3 years ago having spent god knows how long on dialysis.

One thing we did agree on was that we should go get a stiff drink. As my dad was missing out I had 2 pints. We checked into a hotel and waited, and waited. Then we got the call to say that it had been a success, he was in recovery and that we could pop in and see him.

As a nurse I don't get daunted by the machines and equipment, and I've seen many a patient on a ventilator, as has my sister, also a nurse. I've also spent time in ITU and so I'm fairly familiar with the whole set up. This all goes out the window when it's your dad laying there.

Your big strong dad who always makes things better, the man who takes you to your oncology appointments, leaves you flowers on your doorstep after his night shift every year on your birthday (usually with Cosmo magazine), brings you nibbles in cute little bowls and there's no such thing as just a drink when you visit, oh no, you get ice, a slice, straws and your own little napkin, that's just standard. Since my diagnosis, most nights I get a text saying good night, it's quite a comforting message, and knowing that he works nights means that if anything were to happen he'd be around. And so there he was, lying on a horrible hard bed, a surgical wound down the centre of his chest, drains, tubes and masses of equipment either side of him. So far from the man I was used to seeing. We were able to stay a few minutes, the surgeon and nurses tried to reassure us that he was doing ok considering, no other vessels were compramised, he was on bypass for a short amount of time. "Bypass" that word sends shivers down my spine. We kissed him and then left, back to the hotel room. 

I shared a room with my mom and Adam that night, it was actually quite comical, Arron and Dave had packed a few things for my mom, and apparently when you say "bring a couple of nice tips" this actually means "bring clothes that mom would decorate the house in" this went down surprisingly well for someone nicknamed "The Dutchess"... Not.

Adam paid for the 2 rooms that night and yet ended up sleeping on a bed base with 1 pillow and a dressing gown, right next to the kettle, and for anyone who knows me, knows that I have trouble sleeping and live a cup of tea no matter what time it is....He also gave himself a concussion from bashing his head on the suspended bed side table...

It's safe to say that my dad was the only person to get any sleep that night.

The next few days are a blur, I know we've drank a lot of tea until 2pm comes around then we sit and take turns to sit with him until 8pm when we return to the hotel. 

He seemed to be doing really well, then he started struggling with his oxygen levels... He then had to go on c pap, which helps to keep his airway open continuously, very effective, just looks awful and very uncomfortable, the mask he had covered his entire face, he couldn't speak and the air was obviously drying his eyes out, very upsetting to see, made even worse when taken off so he could drink and his sats plummeted to 60%. But I guess it did the job (touch wood), after 3 days he was weened off it and put on nasal specs. 

His kidney function took a hit as expected but doctors are optimistic that it should come back up in the next few days, he also went into AF (atrial fibrillation - irregular and abnormally fast heart rate) but hopefully that was a temporary thing... Now he just has to get rid of a chest infection, ensure that his SATs stay up, his BP stays on the lower side, and slowly start eating so that he can come off the nasal feed and give his wound the bestist chance of healing. Sigh. Oh and get moving so that he doesn't get a DVT or pressure sores....sigh again.

I can't believe I'm even writing this about my dad. I think I'm still in shock. It's funny how things happen, they were meant to be going elsewhere that weekend but it was fully booked and so they ended up in Bristol, which just happens to have a totally ace Heart Institute that routinually screen for AAA's and such conditions.

Also, had my dad have been at home there is no way he would have called an ambulance. He would have waited and played it down, and then God only knows what would have happened....

I'm a great believer that in life, bad things have to happen to people in order for good to happen to someone else, I think it could be called equilibrium? 

I would absolutely love to meet the person/family who is having all the good and so therefore making us have the bloody bad.... They had better be having a blast....

Sigh