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.
Aching from deep within. My outer shell maimed, Cancer popping up here and there, treatment effects becoming evident inside, Emotional and physiological damage emerging as short term side effects subside, Honouring my body's journey rather than the future cancer has claimed.
Internal chemical warfare, breast amputation and nuclear burning, Uncovering bad news and medical options is a skill I'm learning, Despite the collateral damage my body's response is worth respecting, But in order to move forward my mind needs to be accepting.
Path seemed clear for a moment; nothing is the same forever, Now hot spots and uncertainty, cloud the route to sever. More prodding, scanning, talking and results to endure, Scans for clarity bring more amiguity and no hope of a cure.
Leaving the craziness. It’s calm, warm and still, back in the nook, I’m enveloped in love. Held tight, so many emotions can let go, Breathing in deep to my soul, exhaling from down low, Wrapped in 15 years shared rollercoaster and the future cancer took,
Bodies morphed, trying not to sob, Moving from daily doing to stopping and being. Whilst accepting so much, it’s still a shock from which I’m reeling, Unknown timeline, but a future I know cancer will rob,
Still and simple. Opened up, yet held tight, Nestled in the nook. This is my safe place. Lying here, in the truth; still a break from the inevitable race, Are the scans revealing my future? Is there more blight?
Tummy gurgling, brain racing. Thoughts scrambled, running ahead, Looking back with fondness and ahead with dread, Waiting for scan results. Day packed to avoid pacing.
Going into myself, shutting down the outside, Anonymous evening classes to fill my brain with bright ideas and kick these dark thoughts out, Making room for the new where the unthinkable currently resides, Looking around this packed tube at glum faces. Grab life, smile, I silently shout.
I emerge into the sunshine, renewed and teetering on the edge of now, Get back to today. Breathe. Be. Reconnect to your senses, look outward, as much as yet another hospital department will allow, Thoughts out on this paper, time again to be smiley me.
The next three days are a bit full on as we try to get more information to make a decision on treatment options beyond immunotherapy. I have several scans, bloods, oncologist appointments to review my final cycle of chemo, scan results and immunotherapy (or placebo) treatment.
Today I’m having a PET-CT scan. Although it is one of the most informative and caught my secondary tumour early, this is my least favourite scan experience. Out of all the treatment and investigations I have had this is always one of the loneliest with way too much time to think.
Firstly, let me tell you (as best I can) what a PET is and then what it is like. It stands for Positron Emission Tomography and it is medical imaging technique that uses a radioactive isotope (Oh Joy, and this is my 4th in just over a year) attached to a biological molecule (often glucose labelled with radioactive fluorine). This is called FDG for short because the chemical name is very long and I have forgotten it. This lovely cocktail is used to produce a 3D map of functional processes in the body.
You have to fast for 6+ hours for it, so the cells using glucose use the FDG not other stuff you have eaten. I nearly screwed this up today as I ate a fruit pastel in my mum’s car on the way to the station, fortunately I realised (only after sucking the sugar off) and spat it out the window (class). The kids thought this was hilarious, not sure my Mum was that impressed with my manners or my forgetfulness. Anyway, I breathed a sigh of relief when my blood sugar levels were 4.8% and in the normal range they’d expect for someone who hadn’t eaten since before 7am. I had visions of this ridiculously small amount of sugar being fast tracked to any remaining pesky cancer cells and ruining the scan. Think I was a bit neurotic this morning.
It takes about 60-90 mins for the cells in the body to uptake the FDG. The clever scanning machine then detects radiation emitted by the fluorine isotope and produces a map to reflect glucose use in the body. With me so far? In a nutshell, the more glucose used the more an area shows up ‘hot’. Cancer cells are rapidly dividing cells so tend to be hot spots. Other areas of high glucose activity are the heart and areas of historic or recent trauma (surgery sites, radiotherapy damage etc).
We are looking for rogue cancer cells in other parts of my body as well as a detailed look at what is going on in and around the lymph nodes in my axilla (armpit to you and I) as this is the site of my secondary tumour. Chemo is a systemic treatment so it should have reached parts other treatments cannot (to coin a phrase). That said triple negative cancer cells are pesky, aggressive, unpredictable little so and so’s and have a habit of popping up when and where you least expect them. They can also develop resistance to chemo. I am hoping we can get this PET-CT result in tomorrow’s appointment as I’m keen to know what we might do next to out fox this disease.
The clever radiographers combine a CT (structure and anatomy) with the PET (info about how the tissues function metabolically). The pic below sort of explains this.
It is a bit like google maps combining the map view with a satellite or street view.
So whilst PET-CT is kind of the best at spotting cancer cells on the move or hiding in new places, its not my favourite scan to have. That got me thinking (3 hours on your own not moving does this) about my top 5 scans! So here they are for a bit of informative fun.
CT scan – quick efficient and contrast dye can go through my port
MRI scan – noisy and long, but if you do yoga breathing it’s ok. Contrast dye can also go through port.
Bone scan – radioactive injection through cannula can be tricky and the 3hr wait for it to do its job can be a pain if you don’t plan for it (I normally meet someone for lunch!!). But the scan itself very close to your body, but it is quick and you don’t have to keep away from people. Everyone is in the room with you so you don’t feel isolated.
Ultra sound – this is pretty easy and painless, but it comes in at number 4 as I question its accuracy in measuring invasive cancers. I’ve had a tumour that has supposedly shrunk by 50 and 40%. This gave my oncologist, surgeon and family false hope. Instead of removing a 24mm tumour the reality was 96 mm of live cancer and no clear margins (so probably more still there). I don’t trust ultra sounds much!
PET-CT – the lonely scan or the leper scan. As soon as they give you the radioactive tracer injection (which can take ages due to cannula issues) the clock is ticking. They take you to a small room where you have to sit completely still for 60-90 mins. You then have another 30 mins in the scanner and have to keep away from people for several hours afterwards. Pregnant women and young children are a no no. Members of staff back away from you as their Geiger counters start clicking at you.
I’ve just remembered mammogram! Now that was genuine pain, having a tumour squashed between two plates and scanned. That would be number 6. Bone density tomorrow – no idea what that entails.
Turns out PET scans at this big teaching hospital aren’t as lonely as the (very posh) place I had my previous scans. All the people are lovely and most of the patients are in bays together rather than tiny cell like rooms with sci-fi loud speakers. This space is rather comically called the ‘Hot Waiting Area’ and we have our own ‘hot’ toilet. They let you read here too (unless they are scanning your brain) so that’s a good way to pass the time. I’m also writing this.
The hot area was full of glowing patients waiting to be scanned, so I ended up on a trolley in a freezing cold recovery room from 12.45 til 15.15. It was quiet, but cold. They had a backlog of patients so once my cannula was in (second attempt) I waited a while before getting the radioactive cocktail. The pic below shows the (presumably) lead casing the injection comes in to stop the staff being exposed to too much radiation. Blimey I’m going to be glowing like the Ready Break boy when I get out of here.
During the wait I can’t help worry about next treatment steps, if its spread any where else. If so what this means for prognosis, continuation on the trial etc etc. I haven’t had my latest CT scan results yet either (that’s tomorrow after bloods and a bone density scan). Had to break out a second metal free scan outfit this week!
The PET-CT Scan itself is fine. They come and collect me about 15.15 ask me to use the ‘hot toilet’ and then I get in the scanner. They wrap me up in a weighted cover and blanket so I don’t move my arms and then whiz me gently up and down on the scanner for about 30 mins. In complete silence. Quite soothing, but way too much time to think – as if the 2.5 hours in a room on your own hasn’t sent you into neurosis.
Once off the scanner you are reminded that you mustn’t have prolonged contact with small children or pregnant women for a few hours. Tricky as a mother of two and travelling home on a crowded tube and train in the school summer holidays.
Before leaving the centre, I have a hot cup of tea from a styrene cup to try and get warm, two free biscuits and my packed lunch. It’s gone 4pm and I’m starving and a bit spaced out. It’s now pouring with rain and my metal free outfit is soaked through. I’m hoping the PET-CT results will be ready for my appointment tomorrow, but let’s see.
This post is a bit technical, but I thought it would be useful for people going through or supporting others having a PET-CT scans.
365 days ago today I’d been in hospital for a three night emergency stint with febrile neutropenia (low neutrophils, which are the white blood cells that fight infection and high temp), but managed to persuade my oncologist to let me go to Ladies’ Day at Glorious Goodwood.
I’m not quite sure how I persuaded him my family were a bit sceptical, the nurses were dead set against it, but he saw the person not the disease and its risks. He understood that the mental attitude and determination of a patient was a key part in getting through the cancer treatment. He didn’t want to thwart that. I loved him for that. So off I went with a large copy of my file, a thermometer, blood pressure machine, my wig and my hat. And an equally ‘up for it’ sister.
It was so liberating. I’d done three cycles of FEC chemo and I had another three cycles of Docetaxel (Taxotere) to go. It gave me the energy and verve to get through the remaining nine weeks. Boy did I need it.
This year I planned a repeat – of the racing not the emergency or the chemo.
As you know I was in the purple chemo chair late last night, but I managed to put my determined hat on, one foot in front of the other and catch the train to the coast for the sunset. A far cry from cytotoxic IV drugs. Today I was back on the racecourse again enjoying the beautiful south downs, lunch, bubbles (shh don’t tell the new oncologist) and afternoon tea. All in the company of one of my wonderful siblings.
We didn’t have much luck on the racing – in fact I think it is the first time I haven’t had any winners or places – but my previous scans are showing that I’m coming up neck and neck with my disease, so I’ll take that racing form instead.
Some people think I’m crazy cramming stuff around treatment, others a ‘legend’. I’m not sure either are right. I simply believe that in order to get through very difficult, uncertain physically and emotionally draining times you need to have something to look forward to. Little things and bigger things.
I seek experiences and events that shift your head from dreading another round of chemo to working out how to carry a case and a hat box to hospital and then the coast on a commuter train! It could be seen as displacement activity, but I’d far rather be chatting to fellow patients about horse racing and the beach than the damaging effects of chemo or prognosis. I like to choose my own narrative and walk my own path.
As I have said before the last 14 months have seen me face into some of the scariest fears and actual experiences. The thought of leaving my children, possibly before they finish primary school, the thought of my parents having to attend my funeral. Triple Negative is an aggressive breast cancer with no targeted treatments (yet), so making the most of everyday and planning milestones of genuine quality time with the special people in my life is an essential part of surviving the gruelling and seemingly never ending journey of cancer treatment.
I look back at the last year or so with fond, special, treasured memories. These give colour and brightness to the dark days and the uncertain grey ones. We all need a few glorious, splendid days and today was one of them. Full of striking beauty and colour.
Whatever you are facing in life, pockets of good simple times should be scheduled into the short and long term plan.
So today is my ‘last’ chemo and I haven’t even written about chemo properly. I think that might have to wait. It’s just a bit too grim for today.
Suffice to say that not all chemo is the same and everyone’s reaction is very different. That’s why you have an oncologist who specialises in this dark art of managing the tight rope between efficacy and toxicity (think this is a polite way of saying killing the cancer or killer your organs/you). We haven’t killed all the cancer yet, but on the plus side we haven’t killed me either, so all good. Told you it was all about perspective.
I put inverted commas around ‘last’ because when you have metastatic cancer (cancer that has spread from its original site) your know that your last chemo is unlikely to be your last. In fact it’s often the only treatment option to keep your disease controlled, so chemo kind of becomes your friend. Developing chemo resistance or running out of chemo options is actually a bad thing as it means your disease is out manoeuvring the possible treatment. You then move into palliative options that make your life more comfortable while the disease does its thing. Let’s not go there yet.
Back to today. Today is my last chemo for a while. That feels good. I have 18 weeks of four types of chemo last summer into early Autumn (which depressingly didn’t really work). This Spring/Summer I had another 18 weeks. Still six cycles of the cytotoxic stuff, but this time I had two types (Gemcitabine and Carboplatin or GemCarbo to its friends) two weeks out of every three. I’m on a clinical trial so I might be getting immunotherapy too. Alternatively I might be getting water (placebo), which is frustrating, but a reality. Even though GemCarbo is an older chemo combo I knew it was getting results with triple negative breast cancer based on my obsessive google reading. It was therefore worth the travel to a research hospital and the gamble of getting Atezolizmubab, which is also getting great results (more on that later). After today I will still have cycles of immunotherapy every three weeks.
I feel very mixed about today because so far we think this chemo is working. It’s shrinking or should I say shrunk my secondary tumour. I worry that stopping it will mean it pops up somewhere else or starts growing again. Or it reoccurs in my chest wall, skin or sternum from the original site.
I think of metastatic cancer as mould spores. You know how they lurk unseen on bread, barely visible as tiny white specks, then BOOM, you’ve got patches of mould all over the side of the loaf. Leave it lurking at the bottom of the bread bin and before you know it, it has turned into an unrecognisable bag of dust.
I don’t want that to happen to me. I think we’ll leave the brown bread and toast analogies right there.
So we are on the hunt for those mould spores. Actually you know what, that’s rubbish you can’t even see them on the most sophisticated scan (A PET), so we can’t really hunt for them. I prefer to accept that they are definitely there, we just need to be ready and waiting like ninjas for when they pop up. This is a more proactive and realistic way to view the approach to metastatic cancer.
Between the blood tests and chemo, I’m having a CT Scan today too. I have them every 8 weeks to check for disease progression, or large patches of mould! I have so many scans I even have a scan outfit (winter and summer). It’s an outfit I have perfected that manages to be metal free and not look like pjs, whilst still allowing access to my port-a-cath. It allows you to complete you scan without the need to get dressed and undressed. A time saving decision, plus it also saves the faff of trying to fit and re-fit my prosthesis or being exposed with one boob in a corridor.
I won’t get the scan results for two weeks, but last time the treatment was working. Maybe I’m getting the immunotherapy or maybe the GemCarbo has worked.
This constant cycle of treatment and scans can get a bit wearing. I tend to approach it by making treatment options based on the worst case scenario and life decisions on the best case scenario. I find this helps you make the best of each day whilst hoping that you are creating more days.
I was here this morning for bloods at 9am, but I won’t get chemo until much later as they have to do a lot of tests to make sure my body can handle the dose, then they have to order the drugs from pharmacy. It is now gone 3pm and still no sign of a seat in a purple chair. This means steroids after 4pm and no chance of sleep tonight. Another thing to accept and roll with.
They are calling me in. Let’s do this one more time.
Picking up promising words that glisten in social media, Forum posts, global medical press articles and Google scholar, Emerging treatment targets buried deep in academia, I read early clinical trials celebrating 9 months extra, with horror.
I feel relatively well; how can this be? I prepare for the worst, but hope to defy statistics. I refuse to believe this will happen to me? When is the time to be positive or pessimistic?
Meticulously searching for eligible, global, clinical trials Does my tumour have infiltrating lymphocytes and is this best? Wondering if I’m allergic to Chinese hamsters in vials, Ambiguity over different antibodies for PDL-1 status test.
Targeted treatment options limited, I’m on the very edge of science, searching for hope. Cancer cells lurking and all I want is to get rid. Researching into the night; no time to mope.
Finally feeling I have narrowed my search, I’m no scientist, but I’m driven to discover insight, Back and forth between science and my life I lurch, Being my own advocate, following the path I think is right.
Acquainted with this secondary tumour for less than a week, Meeting the Principal Investigator, whose language I only partially speak, Eligible through the reams of small print, but waiting for scans, Not spread too far, big enough to measure is the result we seek. Awaiting the results, continuing to read, making back-up plans.
Three weeks from secondary diagnosis to placebo/immunotherapy in hand, Obsessive nature; no sleep; tenacious yet polite; everyone moving at speed, Navigating changing hospitals; biopsied bits of tumour flown to distant land, Late night forums; wonderful women who’s advice I heed.
Laser focus sacrificed presence now, for longer with my children, Shutting down the outside. To go after what’s inside. Driven to search for other ways, And now I may have lots more days.