Don’t speak too soon…

17th March 2020

I know I’ve been radio silent. I know you have been thinking about me and I know by the volume of texts and message I have received in the last week that Covid-19 has triggered the rise of my name up the list of people to think about.

Thank you for thinking of me. I’m OK.

Actually I am not just OK. I am pretty damn good. I could have written this a couple of weeks ago, but despite my strong belief in my intuition I was still too superstitious to announce that my cancer is shrinking. I think I need to write that in capitals.

‘MY CANCER IS SHRINKING’

I knew this by the feel of my armpit, the colour, shape and feel of my mastectomy scar and chest. They way I felt, my shrinking arm, my ability to breath and move. I knew it in my heart, but whilst I couldn’t keep my opinion from close friends and family I didn’t feel I could commit the news to writing without the confirmation of a scan (even though these are notoriously unreliable).

Today my oncologist confirmed that I am having what is called a partial response (PR) to treatment. When you have been fighting advanced cancer for nearly two years this good news does not seem real. The tumours have not gone altogether, the pleural fluid was malignant and the cancer is still lurking and lying low in my body.

Waiting to pounce.

My treatment is to extend my life expectancy, not curative. But God damn it (too many Netflix boxsets, I never say that!!) now I have it in writing, that it is actually shrinking.

And that my friends (or should I say you’ll) is something to celebrate.

However, we know it is a roller coaster and the good bits are pretty rapidly followed by a setback or frustration. This wouldn’t be my journey if it was straight forward.

18th March 2020

I wrote the beginning of this post yesterday morning when I had seen my oncologist and checked in to the NHS on-site hostel (more later!). I’d got through the security and the temp checks on the doors of the hospital. I’d navigating (at very wide berth) the person having a row with security on why they were not a Covid-19 test centre. I’d passed the staff having their ‘donning and doffing’ training for their Covid-19 suits. I had my bloods done, lovely Jim (name changed to protect his blushes) got my port first time, I went straight in to the oncologist, the news was good, they were still treating patients: all there was to do was hang out on my own and do some work and read my book all in the knowledge that my treatment was working for the first time and my tumours were actually diminishing below my fingers. I was happy and chilled despite the eerily quiet waiting rooms and the impeding doom of Covid-19. I was isolated in my own little bubble in the NHS hostel. That even looked ok once I’d put the sheets on my bed and covered the mattress cover!

This was surreal, now it’s getting real
Frankly, I did not want to touch it.

Then my phone rang and the trial’s nurse informed me that my bloods weren’t good enough to go ahead with treatment tomorrow and it would be delayed a week. The treatment that was properly working for the first time in 2 years. I was now frustatingly stranded in central London with no treatment the next day. I was confirmed neutropenic (no fighter white blood cells). A situation no one wants to be in, especially on chemo & immuno and especially in the midst of a global pandemic. I was gutted and a little bit scared.

As I was about 10 yards from my oncologists office I suggested that I popped over. There had to be some advantages to being on site. I was poised for action and I needed to see the people who could help, face to face (from 5ft). Together we had a chat about options. I did not want to delay a week. What if they close the chemo ward? What if the cancer sees its window of opportunity and runs rife? What if I get Covid-19 and they won’t give me treatment or worse throw me off the trial?

Despite the racing questions, trial protocol and frankly common sense told me we couldn’t do treatment as scheduled. I didn’t want to wait a week. The oncologist prescribed me some GCSF injections. They super charge your bone marrow into making more white blood cells and give you mental bone aches. Oh goodie.

The upside is I have persuaded them to let me try for treatment again on Friday and of course I hope to go from 0.4 neutrophils to something so super charged Covid doesn’t even darken my door.

The truth is I’m not worried about having Covid-19, but I’m not rushing to a ‘Covid Party’ either. My big concern is that they stop giving treatment, if they need the wards or staffing becomes so low that hospital can’t function. School closures are imminent. I’m sorting out lots of stuff for home schooling, but I now have to juggle getting to the hospital and back and childcare. The worry at my hospital is if the schools close the healthcare staff won’t be able to work. This is a systemic challenge of gigantic proportions, we have no idea how this will impact on our society in the long and short term. There will be many unintended consequences, good and bad.

I have given up on a normal future. And a normal now. I have had to stop most of my work as my appointment schedule is so intense. I have faced squarely into the depths of my own mortality. I have accepted the reality of an early death. Now the rest of the nation is being asked to challenge what their day to day life looks like for the foreseeable future.

The plus side to all of this (toilet roll hoarding aside) is we should spend more time with our immediate family, in our homes, just being. Creating experiences for our children that will shape them forever. My hope is that co-operation, creativity, collaboration and kindness will prevail. We will consume less and pare down our lives a bit.

I have certainly had a simpler life (parking the advanced cancer dramas) for the last two years. I booked our first family holiday on a plane a few weeks ago. The kids were delighted, it was iconic to them. If we can fly and leave the country, Mummy must be getting better. We cancelled it two days after booking – still at least my kids aren’t blaming me anymore!

Tech is failing me for photo uploads today and my proof reading head is not on, but if I put off posting another day it will be another week.