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.
Why do people constantly say this to you? Mostly I do look well. I make an effort with skincare and a bit of make up. I have a decent hair cut (as much as you can with post chemo curly regrowth). Despite my distorted and ever changing shape I try to wear clothes that make me feel good (balance of comfort, fit and style). For all intents and purposes I do look well. I am well.
Yet I have terminal breast cancer. I use that deliberately jarring word because unless I throw myself under a proverbial bus it is the advanced, secondary, stage 4, terminal, metastasised breast cancer cells that will kill me. (Although I have had a brief dalliance with a pulmonary embolism, but that’s a story for another day).
So, what does someone with stage 4 breast cancer look like? Even a year ago when I had stage 3 I didn’t think stage 4 would look and feel like this. This is why people sometimes write you off or feel pity for you when you have advanced cancer – they think you will look and act ill. I think it’s why they say [but] ‘you look so well’ in a surprised tone. They don’t fit the stereotype of someone with advanced cancer on their third series of chemotherapy and 7th chemo agent. It’s ignorance, maybe denial. Like me they think a stage 4er would be too ill to do most things.
I’m still doing my upmost to grab life with both hands and be normal. I’m also on a quest to give people a perspective of what it is like to have to wake up every morning and face another day of tablets, treatment, appointments, fights to be heard and taken seriously.
The fight for your life every day.
The cancer is one thing, but the system is another. My daily fight is like this:
1) The system (disjointed, stretched past breaking point NHS system, drug company protocol, NICE guidelines, insurance company, the postcode lottery) 2) People’s ignorance, attitude and outdated stereotypical view of cancer 3) Treatment side effects (historic, cumulative and current) 4) My own demons and expectations about what I can do 5) The cancer Once I’ve done that there’s the normal hectic life of a young family and that’s before the Christmas madness.
Despite this pile of things to battle I still want to enjoy my life and contribute to society. I crave normal, not extraordinary. I still want to help out on the school fireworks ‘glow store’ even though I couldn’t officially commit and just jumped on, on the night. I still want to do the garden, swim, cook, walk and work. Yes work.
I feel alive when I work. I feel like me. And that’s actually all you want to feel when you are fighting for your life. I was born to work. I love it. The week before last I did a piece of work designing all the facilitation sessions for a conference for 250 healthcare professionals. I trained the facilitators and made small talk through a sit down dinner. I smiled and offered paracetamol to the man with a cold and a headache. I did a good job. I contributed. I used my busy brain to help some other people and I earned some money. I was delighted to have the opportunity.
I checked out of the hotel the morning after and did battle with flooded rail lines. I got sent to Coventry (literally). I went around the problem (that’s what I do) and got home to dump my bags. I then turned around and got a train to London for yet another hospital appointment.
And you know what they said?
‘You look so well’
And I did. Yet, I was tired. My feet and hands were red and stinging from chemo induced side effects (apparently it’s the drug leeching out your capillaries) . I didn’t have enough oxygen from my low red blood count to climb stairs or walk far, my lymphoedema arm was enormous and heavy (32% bigger than my left arm). I could no longer get my coat on my arm. But I was still smiling and still keeping on keeping on.
It is a total paradox, on the one hand I want to be treated normally I am still me after all. On the other I am struggling mentally and physically to hold it together. I want and need to be able to park nearer or to have a seat on the tube, yet I look well and I don’t want special treatment. I am multi faceted and a contradiction.
I think I need to be kinder to myself. To give in to more help, so that I can get home from a whole day of hospital appointments in London and still have enough energy to help with the Roman project and read bedtime stories.
I suppose what I’m saying is I want people with cancer to not be marginalised by society because they don’t fit the mould of sick or well. Like me these people have much to contribute, but equally we need a hand with a few other things so we can keep doing so!
I want to be treated to live, not live to be treated.
Like poppies, life is beautiful, fragile and fleeting, Remember you don’t have to be killed at war, To lose your life, Cancer doesn’t have to be rife, You can float through life striving for more, Rather than making the most of every chance meeting
We should be silent at 11 O’Clock Remembering those that gave us liberty, Stillness and quiet, is a dying art, Real conversations, swept away as we dart, About playing at being happy and busy, Losing your real life of simple pleasures that rock
You drew cartoon boobs when we first met, You marked me up with Sharpie, You were to the point and all set, I joked about stories for a dinner party,
Nipple callipers and sample silicon hidden in your case, Rolling back and forth between the private and NHS side, Driven by clinical need, patient outcomes and pace, Your work ethic and commitment cannot be denied.
I wish you’d had a magic wand not a scalpel, The scans seemed certain, but they lied, Meticulous precision could not conquer the way these cancer cells rule, We’re still keeping on; it’s one hell of a ride.
Months later I’m back, punch biopsy of my scar inside, Pathology confirmed what I always knew, I didn’t need the scientific view, No time for more surgery, more systematic treatment; more time to bide.
Started June 2019 when I found a tiny lump the size of a pin head in my mastectomy scar. I was reflecting on surgery.
People thought I was paranoid. They said It was scar tissue. I know my own body.
Finished in October 2019 when I returned to my original surgeon for his opinion; which confirmed mine.
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.
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.
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.
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!).
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.
“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.
You don’t have to wear pink, To be aware of breast cancer, It’s become so big, people don’t think It will happen to them.
If you do one thing today, Make sure you know how to check, I know you don’t think you have cancer in your deck. In Britain 31 women will die of breast cancer everyday.
Real sisters, mothers, daughters, aunts, wives, Lose their lives. Everyday. Why not me? And why not you? Don’t be passive, there are things you can do; Real conversations, commit to checking. Because Real lives, cancer is wrecking.
Amidst all the trial and randomisation anxiety of last week, you may recall I promised you I’d get in contact with Jimmy C of ‘London Hearts’ and ‘Shakespeare’ portrait fame.
I did this last Tuesday and both himself and the guy who commissioned the piece at Network Rail got in touch overnight. A great example of how we should all reach out to others, especially if they have inspired us and even if we don’t know each other. We are after all, all humans with an inate need to be connected, noticed and appreciated. They were both pleased to hear the positive impact the work had had on me (and my family). I have agreed to credit the work where possible and of course I am not about to make or sell products that depict Jimmy’s or any other street artists work. So all good.
While researching Jimmy’s art I also noticed that the Shakespeare piece has had an update (see below) since earlier in the summer.
Nothing stands still, it all evolves. In the same way that the recent rain has bought its own iteration of the drip painting under the arches.
On speaking to Jimmy I also learnt that the Shakespeare piece is available as a print for £60 from The Globe. He didn’t ask me to promote this, I just thought I would.
I’ve also commissioned a canvas of the cosmic hearts to hang in our home and remind us all that love is the best response in dark times.
12th October 2019. (Posted 16th October after a brief respite from chemo induced vomiting etc.)