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.

A Bitter Pill (or 10)

There is no doubt that mentally it’s tougher to physically swallow chemotherapy. Not least when you were hoping to avoid it and try immunotherapy.

Breakfast in bed never looked so appealing.

The last 3 weeks have been a blur. I’m hoping I’m through the worst. This post has been written a bit intermittently. 

Most of you know by now that I was on the placebo in the last clinical trial. After a bit of a scramble, I was lucky enough to get on another clinical trial. The last place globally, with a chance of getting Atezolizumab. 

Unfortunately I got the control, so as you know I’m not on immunotherapy I’m on chemo again. I’m so over chemo.

Passage produced the first weekend of the new chemo, Capecitabine:

I am now dictating this in the dark with my sunglasses on because I’ve been in bed since Saturday night, it’s now Monday morning and I have been pretty sick since Sat. This is my seventh type of chemo drug and my third block of chemo cycles. Naïvely I thought that this oral chemo would be convenient and fit around my life.

Oh how I was wrong.

I feel more unwell than when on any of the other chemos. When you sit and think about it, or lie in my case, the chemo pills are going down my throat and into my stomach and through my intestines, which is a lot of surface area for a cytotoxic drug to be in contact with. I can only assume that this is why I feel so ill.

It may also be the dosage which they may alter, but for now I am still trying to swallow 10 bitter chemo pills a day. I can just about handle swallowing them, but once they have melted or partially melted in my stomach, bringing them back up again is one of the most unpleasant things I have had to endure.

I cannot really put into words the feeling of that acidic liquid burning my throat on the way out.

I really thought the first lot of chemo I had back in June 2018 was the worst (which is why I have yet to write about it properly), but this seems to have really knocked me for six.

As truly revolting as the vomiting is, the headache which feels like my head is permanently in a vice and the photo sensitivity are debilitating. I’ve been lying in a dark room since Saturday night. Unable to read, watch TV or talk too much.

I am unsure whether my body‘s reaction to this is just a chemical one or if I am psychologically rejecting the control; the injustice and all-round bad luck in missing out on Atezolizumab again.

Dictated notes from the first lot of Capecitabine.

I am determined to blaze through this drug in the hope that it is doing to the cancer what it is doing to me. The week before last I ended up back in the hospital in London because the vomiting wouldn’t stop. After some monitoring and a lot of hanging around, I was sent home with additional anti-sickness drugs (or ‘Auntie Soonest’ as my dictation wrote the first time. I quite like that, she sounds like just the kind of person I need right now!).

It is slightly surreal waiting in this Cancer Assessment Unit looking through the pouring rain at the twinkling lights of the city. The streets below packed with the aftermath of ‘Extinction Rebellion’ and the state opening of parliament. Looking out at these two different fights and the enormity of their meaning make me and my plight feel insignificant. I like that. Big cities, vast skies and coastal vistas all make me feel small. They calm me.

After the first lot of sickness I was given 48 hour respite from the chemo to then begin again. 

Once I started up the chemo tablets again it didn’t seem quite as bad; then three days later it started. I had the headache, I was dizzy I couldn’t really talk I couldn’t read or watch TV. Once again I am dictating this into my phone in the dark.

Chemo is a bit like childbirth. No one really tells you what is is actually like and everyone’s experience is different anyway. Universally it’s pretty horrendous going through it, but the potential reward is worth it. Moreover the end result seems to wipe your memory of the enormity of the process of getting there. However, unlike the birth of both my children I was not rewarded at the end of the last two gruelling journeys.  That has certainly been my experience thus far. All that pain and horror for nothing.

Actually not nothing: disease progression.

I am left wondering if this particular chemo is so bad because unlike the others it’s really doing the job. That is all I can grip onto as I endeavour to endure another day.

Cancer is truly an evil bastard. Its treatment is something else. It is impossible to fathom the paradox of feeling relatively well when you are off treatment, with tumours growing everywhere, versus being on treatment and being debilitated.

Mummy I preferred it when you just had cancer, you were ok then, I think the chemotherapy is making you ill, can we go back to you just having cancer?

As my daughter said, right back at the beginning of the first lot of chemo. She was six then.

That’s how I feel right now.  This is why people stop treatment. At the moment I am wobbling my way along a tightrope between tolerable drug toxicity and drug efficacy.

My daughter is seven now. She has an amazing ability to cut through the crap and describe the heart of the situation. For example, when we finished chemotherapy the first time I went on to have three operations, each one hoping to get a clear margin around the cancer. Each one failing in its mission. As I got the last pathology report back in early December 2018, I was truly devastated to discover that there were still cancer cells in the margins. Teeny tiny bits of cancer in my blood and lymph vessels. I knew these where tributaries of two crucial fluid systems that move stuff around my body. This did not sound like a good place for cancer cells to hang out, however ‘microscopic’ they were. My surgeon told me I would probably have to have adjuvant chemo (after surgery) as well as the 18 weeks of neo adjuvant I had endured before surgery. 

This was the first moment I lost it in front of a consultant. My head crashed down on the other side of his enormous oak desk.

Bang!

“F**k!“ I screamed.

When we tried to explain this to the children, my daughter’s reaction was:

So mummy instead of being nearly at the end, we are actually right back at the beginning.

She nailed it then too.

It seems that killing cancer has to happen in a way that makes it feel like it’s killing you first.  Chemotherapy is what you call a systemic treatment. It is undiscriminating, attacking my whole body because the harsh reality is nobody knows where those microscopic cancer cells are hiding now.

So long story short, the same thing happened when I restarted the Cape (as it is known to its friends(!!)).This time I decided not to go to A&E. I took my pulse, temp and BP at home and they were all OK (that’s the first 2-3hrs of being in A&E covered). I didn’t have an infection. I was massively dehydrated and exhausted from vomiting. We phoned the hospital hotline again and said we were stopping the drugs in order to get some fluids back into me. We did and within a few hours I was improving. Once well enough (ish!) to travel to hospital, the oncologist came to the same conclusion as me. It was the tablets and nothing more sinister.

Whilst my reaction was a bit adverse it wasn’t unheard of.

I checked the dosing levels for my body surface area (my husband worked that calculation out) and we felt I was on a pretty high dose. Tipping into the criteria for 10 tablets by a fraction. Chemo sounds like a very precise treatment, but the truth is the dosing levels are quite a blunt tool. It’s unbelievably a bit of trial and error. Thing is, it’s me that is being experimented on. I have had to have my dose reduced on every other chemo drug due to toxicity and adverse reactions, so I guess this is where we are headed.

So after some good peer to peer discussion the oncologist and I agreed that I would give it another go at 80% of the original dose. So only 8 tablets a day now. I’d also have a break until the beginning of the next new cycle to let my body recover. This has given me a week or so to get back to myself, which aside from the cumulative cancer side effects I am now. Hence I thought I’d better get you lovely lot up to speed.

I want to give this chemo a good go because as I have said before the list of possible options for TNBC is very short. I’d be a fool to write one off at the first (few) hurdle(s).

New dose, new attitude, new drug administration regime with three lots of anti sickness tablets.

Let’s do this.

Again.

A dose of chemo reality check

Chemotherapy is barbaric. It is counter intuitive to everything we know and expect from medicine. It makes you feel poorly before it can make you feel better. Often it doesn’t make you better.  It just slowly eats away at your insides and messes with your head until your bodily functions and processes are effected. Then, in theory it starts to impact on your cancer’s ability to grow. 

That’s if you’re lucky, with Triple Negative this is often a short lived effect.  Sometimes it doesn’t work and the cancer just grows. After 18 weeks of four types of intravenous chemo last summer, mine grew. The main tumour was bigger than 96mm when it was removed. The last lot of 18 weeks chemo I had in spring/summer this year worked at first. My RECIST (Response Evaluation Criteria In Solid Tumors) was even described as ‘0mm, a complete response to treatment’. That was for about a month, until I felt it growing again. It was another couple of months before this showed up on a scan. My secondary tumour is now bigger than it was when I started the last clinical trial and it’s in other lymph nodes too, plus a local reoccurrence on my chest wall.  You can probably tell I don’t believe chemo is that effective.

You have to be dying, to want it.  Enough said.

Added to this I was always way too much of a control freak and sensible scare-dy cat to take drugs (aside from a few puffs on a spliff at Uni). Having worked for 25 years in marketing, advertising, branding and innovation consulting that’s quite an achievement and a very deliberate choice. So, it’s depressing to poison your body again and again. It is beyond comprehensibilty that the cancer continues to defy the chemo’s aggressive purpose.

It’s fair to say I’ve had a few interesting reactions to drugs in the past (pre cancer) and I’m even allergic to Red Bull. It gave me altered reality and makes me hallucinate. Even without Vodka.

So as you can imagine I’m not relishing starting my daily chemo.  

I put on my big girl pants (I think I will need them!) and I tucked into my seventh type of chemo drug last night. 

Two years ago I was ignorant about chemo. Chemo was chemo. It was a scary abstract concept that I’d seen depicted in films. It made you lose all your hair, vomit, your skin turned grey and it hollowed out your eyes. It looked grim. It wasn’t on my to do list. It definitely happened to other people. Not people I knew and not me.

And here we are. I am no chemo expert by any stretch and having looked into the ingredients and how they discovered some of them, you don’t always want to know. I’ve mentioned the mustard gas derived Cyclophosphamide before. That really messed with my eyes when it was surging my veins and my eyesight deteriorated. Others are platinum based, taxanes are derived from genus taxus which are yew trees, a tree we played under as children and were told in not uncertain terms not to touch the sticky yew berries (or glue berries as we called them). These are not ingredients you are salivating over putting in your body. That’s why for me intravenous is better. It’s a good way to detach.

This time around I’m on oral chemo. Who knew there was such a thing? It’s a tablet. Ten to be precise. Five in the morning and five at night. So ten times a day I am expected to knowingly swallow cytotoxic chemicals. So cytoxic (not that I think anything can be a little bit cytoxic) that I have to wear gloves to pop them out into a little sauce pot and then take them. I have to return the empty shells of the packet to the hospital, presumably to incinerate (or maybe because it’s a trial). Hopefully I won’t be an empty shell too, I’m not ready to be incinerated yet.

My homegrown tomatoes lovingly looked after this summer rather contrast my new daily ingredients

I thought tablets would be easier, more convenient. I’m only 10 tablets in and psychologically it’s a bit more invasive. 

Give it a week and it will be my new normal.  Or I’ll be distracted by the side effects.  

Onwards. 

11th October 2019