A totally epic year

This is what I was doing a year ago today:

 

 

Yup. It's been a full year since my last chemo.

 

It's been a full year since I had to wear this facking thing:

 

 

A year ago since I made my awesome sign:

 

 

It's also been pretty much a year since I hit absolute rock bottom - a horrible dark place I hope I never end up in again. The worst of it barely lasted more than a day but I had really had enough, and I briefly gave up. I remember the night when I couldn't sleep, kept awake by one thought running through my mind on repeat - "I don't like being alive and I don't want to be alive if this is what my life is". The next morning I had to get out of bed and face the world because I had go to hospital for an ultrasound scan and appointment with my surgeon. I went downstairs, saw my horrible, nasty, ugly, cancer face in the mirror and started screaming at it. At hospital, the ultrasound scan was phenomenal - the tumours that had been there before chemo were gone. There was no visible cancer left. I should've been bouncing off the walls, but I wasn't. I actually went to my GP because I thought I had lost my mind, and didn't know what else to do. I was prescribed a big dose of "giving myself a break and telling my friends what was going on and letting them step in and look after me" and it worked a treat.

 

Anyway - back to December 3rd 2014...

 

My friend Laura came round that night to celebrate with me. We had Chinese takeaway and Prosecco. Laura brought me three presents. Nude nail polish because now that chemo was done I didn't need goth nails anymore. A razor, because now that chemo was done I was about to become a hairy beast once again. And this calendar...

 

 

The calendar meant a lot to me. It meant Laura thought I'd stick around for 2015, even though on December 3rd last year I myself didn't dare think ahead as far as December 3rd this year. I decided to use the calendar to retrospectively record everything I did. It's been on my wall in my living room, reminding me to pack as much in to 2015 as possible. And now I can look back and see all the things I have done, places I've been, and people I've spent time with.

 

Think I've done pretty well! 2015 has been a lot of fun. I've found myself in a bunch of situations I would never have expected. I've challenged myself. Let go of a lot of crap. And now here I am, December 3rd 2015, a year clear of chemo, feeling happy, and well, and realising I now really need to get a 2016 calendar.

 

And in the spirit of packing as much into life as possible, I've double booked myself this evening. Drinks with work friends first, and then out with Laura to properly celebrate my one year chemoversary! Yeah! Now bring on 2016!

 

(Still got the sign haha! This time I've got my own hair, eyebrows and eyelashes though...)

 

 

YOLO

xxx

 

PS a little update, 4/12/15:

Laura is the most awesome mind reading friend because she gave me this present last night...

I've cracked open the Stellisept again....

I'm washing myself in Stellisept, sticking weird gel up my nose and digging out the big cotton knickers. This can only mean one thing!

I'm back in hospital on Wednesday for Surgery #3! Eek!

If you don't want the gruesome details stop reading right now!

A recap:

The first surgery I had in January was (deep breath) a skin sparing mastectomy with immediate reconstruction using LD muscle and expander implant, plus full node clearance. In plain English, the surgeon cut a circle of my skin out all around the nipple which was home to the cancer, then chopped and scraped out all the breast tissue from that side, leaving just the skin. (It all had to be removed, what with me being a genetic mutant of the crappiest kind - ie no known superpowers, just boobs that aim to kill me). He then sliced my back open, took some of my latissimus dorsi muscle and swung it round to the front of my body. He wasn't happy with shape or size or something though so he also stuck in a temporary expander implant. (More on them in a minute). Then he took skin from my back and did a skin graft where that circle of skin/nipple had been removed. He then took out all the lymph nodes under my arm because that's the place cancer cells temporarily squat in before going on their travels around your body. And then he stitched me back up. It took 8 hours, I was in hospital for 5 days, and I had 3 drains for a week. I thought it would be hell and it was actually, overall, a piece of piss and I strangely enjoyed the stay in hospital.

The next surgery was in July, and dealt with  the right side. Skin sparing mastectomy (but taking away the nipple because I now seriously distrust nipples what with their ability to let cancer cells set up camp and breed there) and immediate reconstruction using a temporary expander implant. Again - this surgery was to prevent me getting any more breast cancer in the future. It was a 3.5 hours operation, 2 nights in hospital. I thought it would be a piece of piss. It was HELL. I spent 3 weeks with drains in, and a few weeks off my face on tramadol to deal with the pain.

This surgery:

This is to exchange the temporary expander implants for permanent ones. The reason I was given a temporary expander implant on the cancer side is because I needed radiotherapy asap after surgery. Radiotherapy often damages your skin (in some cases it can break down entirely leaving you with open wounds like serious burns). Expander implants can be put in empty or nearly empty, then filled over time with saline, to stretch the skin gradually. (As it happens, despite the fact I can get sunburn within ten minutes even when covered in factor 50, my skin didn't react at all to radiotherapy. Big up to my hardcore skin for not putting me through the horror that some of my friends have been through. Shout out to Miranda here).

The non-cancer side had an expander too so that the surgeon could basically fiddle about with adding and removing saline from the expander implants on both sides until they match. Symmetry is the goal!

The thing about expander implants is they are horrible. They are rock hard, lumpy, bumpy, and there's a big metal port on them for where the needle goes in to pump them up (technical medical term). Once you're all healed, they get exchanged for permanent implants which from what I understand are all like soft and natural and stuff (here's hoping).

So that's what's happening Wednesday. Surgeon goes in via existing scars, takes out yakky, horrid temporary implants and replaces with lovely, nice new ones. The operation takes 2 hours (so in the case of my surgeon maybe 3 because he's a perfectionist - one of the many reasons I love him to bits), I should be home the same day and get this.... NO DRAINS!

I repeat: NO DRAINS!

I'm hoping to only be off work a couple of weeks. And then... all being well.... no more boob-related general anaesthetics. (I daren't think too much yet about the whole matter of "nipple reconstruction" and tattooing although for those of you that I've discussed this with previously, I have some good news. 1. They're only local anaesthetic jobs. And 2. I've been pissed off that the circle skin graft is too big and I asked Mr K if he could just chop it out and leave me with a line scar like on the other side. Turns out that the skin graft is for the nipple recon. Which is weird. The whole thing is weird, obviously. But this is definitely not as weird as the foof option. And so, fuck it, since he'll not be going anywhere near my vajayjay, I think I'm gonna go ahead with nipple recon. - For anyone that I have not already had this conversation with (which is probably all but about 5 of you).... Yes you read that right. Nipple recon is often done using skin from your foofoo - because you didn't lose enough dignity when going through all the original cancer treatment. Anyway... I'm not gonna think about it right now. Save that joy for the new year.)

So - I'm in hospital on Wednesday, then hopefully home that night. This might not technically be cancer any more but fuck it - if you've read this far you can see why I'm fully entitled to still be playing the cancer card. If you're local and you fancy stopping by and walking my dog for me during the next couple of weeks please do!

Lotsa love xx

There is beauty in imperfection

  

 
This sculpture is called "Expansion", created by the artist Paige Bradley who is a figurative artist and sculptor.

When Paige first moved to New York she discovered that the human figure had generally disappeared from galleries, museums, important collections, art fairs and shows. There wasn't a place for figurative sculptors to exhibit their work. Curators and critics seemed to think everything figurative had already been done and real art was about being a "visionary". Paige knew that if she wanted to remain in the fine art field, she would need to make "contemporary" art. She says, "The art world was telling me I had to break down my foundation, let my walls crumble, expose myself completely, and from there I will find the true essence of what I needed to say."

Paige took a wax sculpture of a woman meditating in the lotus position which she had sculpted with precision over several months and just dropped it on the floor. It shattered into many pieces.

She had destroyed what she had originally made but trusted that it would all come together. The pieces were all cast in bronze and assembled so that they floated apart from one another. Lighting was used to make the new sculpture glow from within. 

“From the moment we are born, the world tends to have a box already built for us to fit inside. Our umbilical cord never seems to be severed; we only find new needs to fill. If we disconnected and severed our attachments, would we shatter our confinements and expand beyond our shell? Would the world look different? Would we recognize ourselves? Are we the box that we are inside, and to be authentically ‘un-contained’ would we still be able to exist? This is the irony of containment. As long as we don’t push on the walls of our surroundings, we may never know how strong we really are.” - Paige Bradley 

"Expansion" is reminiscent of kintsugi, or kintsukuroi, the Japanese art of repairing broken pottery with gold resin.

 

The philosophy behind it is that breakage and repair are a part of something's history and  should not be hidden or disguised. The breaks are not only repaired, they are illuminated, the unique imperfections are embraced. There is beauty in imperfection. 

I've ordered a print of Expansion for myself which I am going to put on a wall at home, for those days when I am hating my own "imperfections". It will be a reminder that my scars tell a story. I've been broken, but I've been repaired. My body has a history, but it is alive. I will tell myself, there is beauty in imperfection.

The drugs don't work haiku

Summer seroma,

High tide swelling, filling breast -

Barbed wire catching flesh.
 

Ultimate Drain Warrior Princess

As part of some personal research for another post (not yet written) and possible project, I asked people who know me for their own perspectives on my cancer diagnosis and treatment. One of the prompt questions I asked was "Are you squeamish, and did I overshare the gross stuff?". So far the response has been an overwhelming "No you haven't overshared the gross stuff."

So I thought I'd treat you all to a post about drains.

When you have breast surgery (eg mastectomy, reconstruction) you are temporarily fitted with and sent home with drains. How many depends on the surgery you've had. In January I had three - back, arm pit (where lymph nodes were removed), breast. This time I had two, although one drained very little so came out after a few days. The other drain I had to keep for three weeks, which is the longest out of all my friends so I am now a kind of Queen of the Drains / Ultimate Drain Warrior / Drain Master Extraordinaire. That kind of thing.

A drain tube/pipe enters your body near to where the surgery was. This drain pipe is stitched in to your skin so that it can't easily be pulled out. A dressing covers the drain site. The drain pipe is very long and at the other end goes in to a bottle.

It's long enough that it can sit on the floor without pulling while you are stood up.

At first I didn't mind coming home with a drain. It was an inconvenience, that was all. You can't shower so washing becomes a big faff in front of the sink (and by the way I learned it's important not to forget the bottoms of your feet - don't worry, I won't go in to the gross dead-skin-peeling details here - even I think that would be a step too far). You have to remember to pick the drain bottle up whenever you get up and move around. Also, if you are me, and come with an above average share of clumsiness plus complete lack of spacial awareness, you constantly catch the pipe on things. Door knobs, drawers, radiators, handrails etc. I pulled the pipe out of the bottle three times.

What fills the drain bottle is a mixture of blood and other bodily fluid. At first it looks like this (ie, a bottle of blood):

But over time it gets lighter. More like a Sex on the Beach than a Rioja.

Every morning at the same time you mark on the bottle where it's filled to, and call the hospital to let them know how much juice you drained over the last 24 hours. All in all I drained well over a litre this time. Mmmmmmmmm.
 

You also grow drain worms. Drain worms are little pets that keep you amused while you are cooped up at home because you're too embarrassed to go out in public carrying a bottle of your own bodily fluid.

I grew a brilliant worm this time.

 

It was really long! This is all one worm....

 

It was an exciting day when it finally made it's way all along the pipe and reached the drain bottle.

Sadly though, this story doesn't have a happy ending. I had to say goodbye to my pet drain worm soon after.

I don't think I can tell the story better than I did in a message at 3.35 am to some of my friends (the ones who understand drains).....

 

If the pipe comes out of the bottle the vacuum thingy pops up - that's the little green concertina thing at the top. There's no fixing it, you just need to go to hospital and get a new bottle.

So I went to hospital the next day to get a new bottle, and while I was there got my dressings checked and changed. By this time my skin is getting pissed off with the various tapes and dressings that have been covering it, and the knot of the drain pipe stitch has rubbed my skin raw.

The nurse cleaned it up, put some sort of calming, moisturising, barrier cream stuff on, and then redressed with a different type of dressing that should have been kinder to my skin. Unfortunately it wasn't and the next day I had to remove it because it was bothering me so much I couldn't sleep!

Poor skin!

(I got round the problem by covering the whole area with one of the enormous left over dressings intended for my back wound in January.)

Anyway, my drain finally came out yesterday. It never actually got to the level my surgeon wanted it to before being removed (30ml or less two consecutive days) but they don't like to leave drains in for more than 3 weeks. (Risk of infection - I was on antibiotics as a preventive measure the whole time.)

I've now had 5 drains removed. One did actually hurt a bit but the other 4 were a strangely enjoyable experience. It's hard to put in to words but it definitely has the same sort of satisfaction as when you pick a scab off at exactly the right time - just more intense.

So now I just wait and see if without the drain I end up with a seroma - a build up of that fluid underneath the skin. They are almost as gross as drains. They bulge under the skin and wobble like a cross between a jelly and a hot water bottle when you poke them. I had one on my back in January. It had to be drained with a syringe.

Anyway, there you have it. Now you know all about drains. I hope this has been an enjoyable learning experience for you.

 

If you have any questions, do let me know. I'd be delighted to answer them.

 

Cancerversary - it's been 1 year

First thing in the morning on Friday 18th July 2014 I went to the hospital for an ultrasound scan. I thought I'd be back in work by about 11am. Instead, after texting Glen as he was in a meeting at work to tell him where I was and what had happened (I hadn't told anyone I was going for a scan) I found myself emailing my line manager and one of my friends in the office to tell them I wasn't coming in, and why.

A few hours later my friends started getting text messages that read as follows:

I went to the hospital today having
been referred by my GP for an
ultrasound scan. My left nipple was
going in a bit. I had an ultrasound,
mammogram, and 4 biopsies. I won't
be told this definitely til I meet the
surgeon oncologist next Thursday but
it seems I have breast cancer which
has spread to my lymph nodes.
They're 99% sure they just need the
pathology report for confirmation. I
don't know what to say really I just
wanted to tell people myself.

This doesn't feel like a year ago. It feels like a lifetime ago.

There's actually only two things I really want to say.

1. I'm alive. Phew.

2. Thank you to everyone who has been in my life this past year. It was you that got me through it. Thank you, from the bottom of my heart. XO

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

(Couldn't resist ending on the drain worm.) 

Ps...

PPS 

Today: