Time for some cheer

I know the weekend’s post was a bit hard going. I lived it and reading it back was tough enough for me. So time for some cheer.

That’s the thing about cancer treatment; one minute you are crawling on your bathroom floor, the next you are whizzing around London having a fine time. Then you’re shattered again. ‘This too will pass’ has become regular self talk for me and many other cancer thrivers.

Today I made the trip for 10 vials of blood to be taken and tested to make sure all my organs are behaving themselves and have managed to process the 10 of the 14 days drugs I poisoned myself and hopefully the cancer with earlier this month.

Good news is, my liver and kidney function and my red, white and platelet cell factories seem in fighting spirit. And so too am I.

I’m still adjusting to the peaks and troughs of this new medication, but hopefully with a reduced dose and three lots of anti sickness drugs by my side I will navigate cycle 2 (and half term (!)) with a bit more grace.

I was lucky enough to get the prime viewing seat for my bloods today. The rain stayed away too.

Today involved, being weighed (1 min incl. lace up shoes) taking some bloods (10 mins), seeing an oncologist (which was less than 5 mins as I’ve been in and out with bad reactions so they are up to speed with my side effects), making an appointment for 3 weeks time (1 min), filing a prescription (2 mins) collecting two lots of drugs from two different places (5 mins) total to collect and walk between two places. So 24 active patient minutes. I left my house at 8.30 and got back to my town in time for a work meeting at 5pm. Granted the travel time is a big chunk of that, but I still spent over 5.5hrs waiting at various places or travelling between parts of the same building.

There has got to be some efficiencies to make there surely. I even transported my own bloods and handed them to a nurse to hand deliver to the lab, because the porter system can add another hour at least. No wonder we have a productivity problem in this country – all those people not working, but waiting, or waiting with someone who’s waiting.

They even have a poster to help manage your expectation

I’m an impatient patient. You may have picked that up! I hate inefficiency. If I can see a quicker, better, different path I like to take it or find it.

That said, Knowing that today would be a waiting day, I planned some jobs and some cheer. In between sorting my annual accounts, finishing a poem, drafting this and picking up some presents I managed a bit of cheer. I stumbled upon a cafe behind the hospital and decamped for some non-vending lunch. I then met Jimmy of ‘London Hearts’ fame for a coffee and to pick up my commission of our very own ‘Cosmic Heart’.

As I had expected he was a lovely bloke and very humble about his talents. I started to shake his hand, but that felt odd, so I gave him a big hug, which felt right. We chatted a while about his work, my blog, legacy, reaching out and connecting to your loved ones and inspiring communities of people to do the same. I am so glad I stumbled upon those hearts, pressed send on what seemed like a slightly unusual email and met the heart behind some of the world’s street art.

Despite the waiting, today was a good day. I feel good.

Sometimes that’s enough.

Poetry

I would not describe myself as a poet. In fact until early March 2019 I had not written a poem since I was required to do so at school or university some 25 years before. 

And yet here we are with a small, but growing collection of poems

I wrote the first poem (Self Discovery) one Sunday whilst laying in bed, pretty low and exhausted following the delayed effects of radiotherapy. Or possibly the cumulative effects of the previous nine months: an advanced cancer diagnosis, 18 weeks chemo, several emergency hospital admissions, 3 operations, 9 weeks of carrying a surgical drain around, 3 weeks of intensive radiotherapy everyday plus a bone infusion. No clear margins and no idea how much cancer was left or where it was. 

I guess I was allowed to be tired and a bit fed up. 

Up to this point I had focused almost entirely on the physical and practical aspects of a diagnosis, i.e. running around the country going to various appointments to discuss, receive or assess the effects and success treatment. The effects were pretty significant and the success was hard to come by or pin down. In fact almost every appointment brought more bad news, more treatments and more procedures or ops. More uncertainty that is for sure.

It was on this Sunday morning that I found myself alone in bed; alone in the house and alone in my thoughts and fears. I felt that I could not talk to anybody about how I was really feeling. Up until this point I could barely allow my subconscious to think or talk about how I was feeling, even to myself. I had not really given myself much time for internal dialogue – it was just too much, too scary and frankly a distraction from the physical, practical, all consuming job of getting on top of this cancer.

To this day I don’t know why, but I felt compelled to write. 

I picked up a pen from my bedside drawer and a scrappy bit of paper (it was actually from a to do list pad – which is definitely my normal modus operandi) and I wrote a poem. It came in 60-90 mins from somewhere deep inside me. From the place that knew this cancer was not gone and this was not the end of my journey. I knew I wasn’t in remission. 

It was 3 days later on the Wednesday that I was diagnosed with secondary breast cancer. The cancer was still on the move.

Since then I have gone back and forth through various experiences on this journey and taken the time to examine how I felt and what I thought. 

I have found writing and reading the poetry an essential part of acknowledging the feelings and experiences I have lived through. A way to accept and discharge the feelings.

I hope they give you an idea of what it is like to have cancer and to endure its often barbaric treatment. I won’t pretend that they are easy reading but it is important that we share how you deal with cancer so we acknowledge its challenges for the many people who are directly or indirectly effected by this insidious disease. 

This is very much my journey and my experience. We are all unique. Each cancer is unique and how we respond to treatment is very personal. 

If someone you know or love is going through this ask them about their experience. And listen to what they say and how they say it. It will make a difference.

Poems to Date

Welcome to My Blog

Ever since being diagnosed with triple negative breast cancer my friends and family have said I should write a blog or a journal. Trouble is I didn’t feel like writing. Updating everyone, answering and writing texts and WhatsApps was writing enough. Especially on the first lots of chemo that made my eyes go blurry and meant I had to wear dark glasses (even inside). Turns out one of the chemotherapy drugs I had in my first 18 weeks of treatment (Cyclophosphamide) is derived from mustard gas, so I guess that’s why.

I’m back on chemo again, but its more manageable this time. Throughout this experience I’ve been scribbling down odd thoughts in notebooks, scraps of paper and WhatsApps. The wonderful and growing number of people who are supporting me and my family are keen to hear how I am doing, so with some encouragement and an experimental attitude I thought I’d give this blogging lark a go.

I hope it makes you stop for a minute and embrace your life right now. I’d love you to have real conversations with the people who matter about the stuff that matters to them and you. Maybe you’ll look at the wonder of the natural world or be compelled to do what you’ve always wanted to do.

Maybe it won’t be for you, that’s fine too. If you don’t enjoy reading a piece move on to another or come back another day, don’t endure it. If you do get something from it I’d love your feedback. Feel free to follow and share the the blog and/or my twitter and instagram pages.

Click on the links for more information about why ‘The Cancer Gap”? or how I started writing poetry or my poems. Alternatively, just scroll down to the beginning of the blog or look in the menu on the top left of the screen. Have a nosey around, you’ll work it out.

Follow me here.

July 2019