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.)
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.
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.
I started writing this on Tuesday morning. A lot can change in a matter of days. Emotional roller coaster feels like a hackneyed and over-used metaphor, one that doesn’t feel adequate to describe the last 48hrs.
I want to be true to what I felt and wrote a day or so ago, so the tense might jump around in this piece – for any grammar pedants out there, you’ve had your warning.
In the run up to being on the trial I am looking for signs of hope or good luck. Originally they were sending my eligibility and radomisation request on my birthday. That seemed like a good omen. The very fact that I got the place offered to me after it had previously been allocated, that seemed pretty serendipitous too.
I’d lost the diamond out of my 40th Birthday ring that signifies 4 decades and 4 family members. It was my birthday, the stone was missing, this didn’t seem like a great sign. However, in the dark of the theatre I found the rock lying on the floor. I had found it again, almost instantly. Surely I’d get through elligibility?
I have jumped through every hoop I have been asked to, I’ve anticipated hoops and removed them before we got to them. I’ve organised my own scans with the help of proactive and kind teams in other hospitals. I have collected my own pathology reports from hospitals in person, scanned them and sent them to other hospitals. I have checked on the nurses screen that ECGs have actually been whizzed on internal systems. I have been ‘on it’ in the most full on way possible – even for me.
Yet we are still waiting… I was told I’d have the go ahead and details of which arm I’m on, on Friday… Monday at the latest… Yet it’s Tuesday and no news.
I am sitting in the clinic waiting to see an oncologist for what is supposed to be Day 0 of a new clinical trial. I’m due to start tomorrow, yet I do not know if I am eligible for this trial (I’ve checked myself, but I don’t get to decide) or which arm I will get. I feel physically sick with anxiety, hope, excitement and panic. An uneasy compound of conflicting emotions. I am emotionally and physically exhausted.
I feel like I’m at the finish line, but there is no one here. No cheer. No accolade. I am wondering if anyone knows I’ve sprinted this race?
So I am literally waiting to hear if I get immunotherapy. I’m in a windowless side area of a hospital lobby. Amidst the juxtaposition of hospital buzz and sedentary cancer patients (and their loved ones), standing and sitting in lines. All of us facing the screen waiting for our name, our fate and our next step. Slowly people are called in.
My husband and I aren’t talking. Not because we are in a grump with each other, but because there is nothing to say or do until we know. Everything else is suspended in time. As a couple with young children you long for one to one time. This is not the vintage of time or location we need right now.
We are biding our time, until it’s time.
Just over an hour after our apt we are called. Not bad.
From my research as someone at the second line treatment phase (second attempt at a drug or drug combo to control the growth and spread of a secondary cancer and/or local reoccurrence), this trial is the only way I can get immunotherapy in Europe (and possibly The World) at the moment. That is without robbing a bank, changing the genetic make up of my tumour or bribing a lab technician in a large pharma company.
I’ve been at this stage before for my first line treatment. I got the placebo.
This time It’s an open label trial so I will know at the start of the trial. This is because it’s a much earlier phase trial and I’m guessing because the control is a tablet and the arm open is an intravenous Atezolizumab and a tablet of an AKT inhibitor called Ipaterstrib. Still struggling with the pronunciation of the latter. Atezolizumab is now a word my 10 year old can pronounce. I don’t believe in dumbing things down for kids. After all, ‘immunotherapy’ isn’t much easier to say.
As yet another aside, when I first talked about immunotherapy with the kids, at the beginning of the year, they were fascinated to hear how that worked. My son, who fancies himself as a future zoologist said, “Mummy, but how did they find out that Emu’s could help people with cancer?”. Oh how I laughed.
I like the idea of emunotherapy. Frankly I’d try anything right now.
BING! I’m called in to meet another new oncologist, who works with the one I saw just under three weeks ago. To my relief, I have been accepted to the trial. Phew! It literally was the last place as it has closed globally for review. We’d secured it. However they still didn’t have the go ahead to randomise me (drug lottery). So I was on, but we still didn’t know which drugs I would get.
Adrenalin was switching on and off like a strobe light. I wasn’t sure I could take much more. I’d already experienced a kind of primeval emotional outpouring on Sunday night. A kind of release that I hadn’t really experienced since being diagnosed in May ‘18. I was a bit freaked out by my reaction, but it was probably proportional and I felt a lot calmer the next day!
After another blood test and another 2hr wait in a hospital chair – I was free to go. To go and wait somewhere else. My husband had taken the day off work, but we still didn’t know if I would get immunotherapy, I was provisionally booked for the next day.
Right now I could do nothing more but go home and wait for the drug sponsor based in a different time zone to get into work and process our randomisation request.
The way this trial works is you either get the control, or one of 8 other drug combinations. Capecitabine (a tablet form chemo) is the control, then the other 8 combos are like a cocktail menu with Atezolizumab as the gin or vodka base and the other drugs they combine with it are mixers or other little spirits to pep up the Atezo. I guess the drug companies aim is to see if they can give Atezo without chemo for it to be effective. What they are seeing right now is that the Atezo works in some PDL-1 positive patients when combined with a taxane based chemo called Abraxane. FDA have approved it in the USA for first line. I wouldn’t be eligible though. NiCE have yet to approve beyond expanded early access programme, due to cost and narrowness of the indications (conditions/disease areas it can be applied to).
OK, this post is starting to feel as drawn out as the real thing was and I’m not sure I can go over it again, so I’ll cut to the chase. The oncologist called me twice that same Tuesday evening to advise of changes to the trial structure, ratios etc. We didn’t want to wait any longer for treatment to begin again, so even at a 50/50 chance of Atezolizumab we pushed the button on the lotto machine (it is literally a computer programme).
I got the chemo.
8th October 2019 (finished on 10th October when I could bear to write about it again).
Who owns the images on the street? On our urban walls? When does graffiti become street art or art? Earlier this year whilst in London with the children we stumbled upon an uplifting piece that I immediately connected to. I think this is street art; apparently graffiti is done for other graffiti artists whereas street art is for a wider audience. Like many others we were compelled to have our photos taken with this happy mural. A bright and hopeful backdrop for many a picture of loved ones. Past and present.
Later when looking through my phone shots for suitable images for my blog, the above street art image popped out at me. It made me instantly smile. It felt right for the start of the blog. I don’t want all the chat about cancer to be depressing and melancholy. I want it to connect to you and others. There is a genuine out pouring of real love that happens with a serious cancer diagnosis. Or at least that has been the experience I have been lucky enough to have.
“I want people to be closer, more expressive and have real conversations with each other rather than a life masked or filtered through social media and conformity. “
I appreciate the irony as I write this on a blog and refer to it on social media, but what I try to do is to be honest and unvarnished. Sometimes this isn’t possible as I have to keep something for myself, sometimes it is unfair on my children, family or close friends to share everything, often it is just so raw I can’t even go there in my head, never mind on paper or in conversation. But I try to be as real as possible, and when I am, great things happen; to me and others. People around me are making life changing decisions, they are saying f**k it and embracing or planning for changes. What I love about this, is people talk to me about it in a way they didn’t always before.
A plethora of people have contributed to the creative process of this blog. From the small bits of encouragement with off the cuff comments about the style of my text messages or whatsApps, sharing of poems and the site, with significant and time consuming gifts like pro-bono executive coaching, logo design, help and confidence with publishing the blog. In the beginning, when I was toying with the idea, I hadn’t realised it was live. At least not until I started getting comments and followers from sincere and real people that I had never met! I then had to take the plunge and not look back.
So I am left with the dilemma of whether I should contact the artist, I’m not sure if I’m asking for permission, because I don’t know if I need it. But I’d like to thank him for his inspiration and mood changing role of his work. It’s a manners thing.
I went to a talk on writing at The Guardian a couple of months ago and met this great woman who was going to start a blog about street art. A weird coincidence. I asked her what she thought. Her view was that the artists liked the publicity and as I took the picture it was OK to use it. I described the art to see if she knew the artist, she thought it might be an artist from New York. He’s apparently fond of hearts and travels the world spray painting them. I looked him up – I didn’t think it was his.
With some light google effort I relatively easily found out who’s work it was. I also found that other works I had photographed and been inspired by were also his. Another weird coincidence. I also saw on closer examination that the work was signed and like many things in life, hiding in plain sight!
The work above was created by James Cochran (aka Jimmy C). The ‘London Hearts’ is one of his ‘drip paintings’ or ‘aerosol pointillism’. It is dedicated to the 8 people who lost their lives in the London Bridge terror attack in June 2017. James talks about the response of love in dark times. It was painted in Spring 2018, when I got my cancer diagnosis. This made it even more poignant and I was glad I’d included it. Those people didn’t invite terrorism into their lives in the same way that I hadn’t invited metastatic breast cancer into mine. I decided to write to the artist and let him know that he was part of a growing tribe of people who encouraged me to keep going, to keep telling my story and to hope that it will be longer than the Triple Negative Breast Cancer prognosis stats suggest.
I’ll let you know what he says…
I do believe that art shifts you, heals you, makes you think in different ways. There is a lot of it in and around the hospitals I visit and it definitely triggers something different. Not least that the people walking these corridors are worthy of some break from the monotony and blandness of endless hospital corridors and appointments.
I am not sure what this ceiling installation is trying to tell you? Each piece of silver, or likely silver plate, is reflected in a flattered version of itself. Is this the juxtaposition between the multi dimensional us and the one dimensional us? Or was it more tongue in cheek? As the owner of one boob and one flat chest I couldn’t help but think it was ironic in a clinic with people who’d had breast surgery. It gave me something to think and laugh inside about whilst waiting for yet another consultant.
Again I looked this piece up and the artist, Cornelia Parker was interested in the captive audience of waiting rooms where ‘time and reality are suspended’ (so true) and was influenced by tromp l’oeil. This is a technique often used on ceilings to ‘deceive the eye’ into seeing something three dimensional. She has done some similar pieces, more recently, one of a series of ‘alter ego’ works in 2010.
So just goes to show we draw our own meaning from art and our experiences regardless of the artists intent. For me art does trigger or jolt me to think in different ways, to make connections and uncover insights that I wouldn’t have done if I hadn’t seen it or created it. I am grateful for the rich and vibrant art scene we have in this country and am delighted that I can stumble upon it on the street and in hospitals.
Look out for it on your travels this week. Let us know if you find any interesting bits?
Written on 26th September 2019 (to post later because I knew these last few days would be tough, and they are). If you are reading this in an email or link. Feel free to visit www.thecancergap.com to enjoy and share other posts and poems.