Ticking things off the Bucket List... Thank you Willow Foundation!

What a difference a year makes.

This time last year was my first chemo cycle. The start of my cancer treatment. I'd had my diagnosis, my first scans and biopsies, and my first dose of poison. I fainted when they put the cannula in and I was so sick after the first chemo I told the chemo nurses I didn't want any more. I was ill, and I was scared. I'd not yet had a CT scan. I didn't know for sure that my cancer hadn't already spread. I didn't know if the chemo would even work, or how ill I would get. I still had months and months and months of treatment ahead of me. 5 more chemo cycles. Mastectomy. Radiotherapy. There wasn't yet any light at all at the end of the tunnel. I was tugging at my hair, waiting for it to fall out. I was staring at the wig sat on a polystyrene head on my bedside table, knowing that this thing that was freaking me out to even look at would at some point need to go on my head, and out in public. I didn't know if my friends would stay my friends. I didn't know if I would keep my job. I didn't know if I would even be alive at this point.

People told me about the Willow Foundation. It is a charity that organises special days for seriously ill 16-40 year olds. I thought it sounded wonderful but I didn't really  think I should contact them. I didn't know when I would be well enough for a "special day". I didn't think I could or should plan anything for the future. I didn't want to tempt fate. I didn't know if I should have a special day. I have a job, I thought, I should probably just organise my own special day.

But just before I finished radiotherapy I decided to go for it. I filled out the form and gave it to my Breast Care Nurse to fill out the medical sections and send it off. So many of the friends I had made through the Younger Breast Cancer Network had been on special days and weekends organised by Willow and at the point when I was coming to the end of active cancer treatment, I realised there was light at the end of the tunnel. I could plan something nice. My Willow application was approved, and I was allocated a "Special Day Maker" Dominic who would organise everything for me!

I decided I'd like to go to Brighton, and discussed ideas with Dominic. The Willow Foundation covered travel, accommodation, and an amazing meal out, and Dominic booked and organised everything.

I can't really put in to words how grateful I am to the Willow Foundation, or how much this weekend has meant to me. It truly has been special. To know that I was able to have such a wonderful time without any of the hassle or stress of organising it (at a time when, quite frankly I've been that exhausted after further surgery that I just wouldn't have organised it) and to know that all of it is thanks to a wonderful organisation and all the people that fundraise for it and donate to it and work for it. It was amazing to go away for a special weekend that was selfishly all about the things I wanted to do, and to feel like, actually, yeah, I deserve it! It was amazing to do things that I had wanted to do for so long and feel so happy and excited that I could burst.

To anyone reading this who is aged 16-40 and undergoing treatment for a serious illness like cancer - please do get in touch with Willow. You deserve a special day, you really do!

In the future I'm going to fundraise for Willow. I want to be able to give something back, and help raise funds so that others can have special days too. Maybe once my surgeon lets me run again I'll work towards a half marathon or something! 

Anyway.... here's what we did in Brighton! ........

Friday
I met Emily in London and we got the train to Brighton together. Being the good planner and organiser that I am I was armed and ready with bubbly for the train journey. :-)

We arrived in Brighton and were taken by taxi organised by Willow to our B&B, Strawberry Fields, located right by the sea and the Big Wheel. It was lovely! We were given ice tea on arrival which was much needed as it was so hot in Brighton - perfect weather! We dropped our bags off and headed to Daisy's Nail Company to get our nails done. Being the good planner and organiser that I am I was armed and ready for that with more bubbly! :-) It was SO nice to be pampered. The staff at Daisy's were absolutely lovely and both me and Emily love our neat, pretty nails!

That evening we went out for fish at chips to Bardsley's, which was recommended by some of my Brighton friends and which I'd recommend to everyone else too.

 

Saturday
One of the most fun, most best days OF MY LIFE! The day was started with bacon and egg butties brought in a basket to our room while we got ready to head out for a day at the beach and pier. The weather was absolutely stunning!
First we went on the big wheel. This was Emily's suggestion so I was a bit surprised when the door to our little pod shut and she told me she doesn't like heights and might start freaking out when we reached the top! Hahahaha! Luckily she held it together, the views were absolutely amazing.

 

 

Next we went to the Pier. £20 wristbands get you on all the rides, as many times as you want. The rides on Brighton Pier were on my bucket list so I was EXCITED to say the least! Ridiculously excited! The rides on Brighton Pier are ace... the best one is this one, Booster. (Emily has some silly pictures on her camera of me on it so I'll have to add a couple later!)

It goes round and round and you kind of swing round and upside down over the sea. It's A. MAZE. ING.

The pier has all the classics - rollercoaster, crazy mouse, waltzers, carousel, haunted house, dodgems, helter skelter (the one thing I refuse to go on. Helter Skelters terrify me.)

 

 

 

  

After several hours on the pier we headed down to the sea. The beach was absolutely packed. It was a perfect summer day and everyone was happy! We got cockles and muscles, and ice creams, paddled in the sea.....

 

 

 

 

That evening we had a table booked at Riddle and Finn's beach restaurant courtesy of the Willow Foundation. Riddle and Finn's are the best seafood restaurant in Brighton and I was about to tick another couple of things off the bucket list - eating lobster and oysters. OH MY DAYS. It was incredible. When I am filthy rich I'm going to move to Brighton and go there for champagne, oysters, and lobster every week! We ate oysters, lobster, crab, mixed shellfish mariniere which included clams, muscles, whelks, winkles, razor clam and things I couldn't name! I love seafood so much, and it was so nice to try so many new things, all of which I loved.

 

 

 

 

 

 

To finish off the day we had a drink on the beach then went back to the pier where we attempted but failed to get into the haunted house (just closed!) and played on the 2p slot machines. Here's a handy tip for your next trip to the pier! If you are kicked off a machine because the arcade is closing, they give you the toy you were trying to win :-)

 

I honestly think this might have been the most fun day of my life!

Sunday
 
On Sunday we had a few hours to mooch around the Lanes.

 

The highlight was "lunch" (cake and chocolate) at the incredible Choccywoccydoodah, which, if you haven't heard of it, is probably the most extravagant and surreal chocolatier in the world. 

 

 

 

 

The chocolate cake and dipping pots were so huge and chocolatey that.... we couldn't finish.
I left chocolate. Unfinished. Me! Choccywoccydoodah defeated me! In the most heavenly way possible though. And only temporarily - as I sit at home typing this I am eating choccywoccydoodah chocolate I bought in their shop!

I really had the best weekend ever. THANK YOU SO MUCH to the Willow Foundation.

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.