What does ‘awareness’ really mean?

On the last day of blood cancer awareness month and the eve of breast cancer awareness month, I am wondering what awareness looks and feels like?

Less than two years ago I didn’t know what Acute Myeloid Leukaemia was, never mind its symptoms. I first became aware of it when our good friend Gemma Thomas was diagnosed with it. I received the call out of the blue to say she’d been diagnosed and was going to have chemotherapy.  For those of you following the story in the media you will know that 3 days later we received the tragic news that she had died. We were still in shock about the diagnosis, we couldn’t catch up with ourselves at the news of her passing.  She was a happy, healthy and compassionate women with a rye sense of humour. We still miss her massive smile and rolling eyes.

Simon, Gemma’s husband has just finished a whole month of challenges to raise blood cancer awareness for @Bloodwise. Judging by social media and the rise in google searches on the subject he’s done a great job. 

A few months after Gemma’s death, I found out my cousin Trudi has AML.  My heart was in my mouth, I could not comprehend that a disease I was not really aware of had taken someone in my life and could take another. I am pleased to say despite being put well and truly through the wringer on chemo, isolation units and stem cell transplants she is doing brilliantly.  Like me Trudi is passionate about raising awareness of her form of cancer and what it is like to endure the treatment for cancer.  I’m super proud that she made a film for Leukaemia Care to bring to life both the difficulty in spotting the signs (and she is a nurse with bags of medical knowledge and understanding of the system) and the mental and physical harshness of cancer treatment. 

Trudi Archer – Acute Myeloid Leukaemia (AML) – Spot Leukaemia

https://www.leukaemiacare.org.uk/support-and-information/latest-from-leukaemia-care/inspirational-stories/trudi-archer/

It is only in becoming aware of the symptoms of different cancers and their impact on individuals living through treatment, that we can begin to catch cancer earlier, and help people feel part of their community and society when they endure treatment or live with their disease. 

“Awareness, for me, is about ‘not fearing cancer’, but being alert for its signs and empathetic and authentic with people who are in treatment or living with cancer.” 

Two months after Trudi’s diagnosis I found my lump.  As you know I was diagnosed with Grade 3, Stage 3, Triple Negative Breast Cancer. This has now metastasised to other parts of my body as well as a local reoccurrence. So I am now stage 4 and have an incurable and inoperable cancer. There are no known targeted therapies or treatments for Mtnbc.  I’m trying to experiment with immunotherapy, but every three weeks someone keeps giving me the placebo. I’m hoping to get onto another immunotherapy trial soon. This and/or chemo hopes to extend my life expectancy. Sounds grim, right? 

But I feel and look really well.  Honestly.

Not at all like I thought someone with stage 4 cancer would look like. Even last year, with stage 3 cancer, I didn’t think stage 4 would be like this. I was pretty ignorant. So don’t feel bad if you are.

This is another reason why I write this blog, to raise awareness of living with cancer.  To help us all work out how we accommodate cancer into our everyday lives, because like it or not, cancer is here to stay. Much better to be aware and face into it rather than to ignore it or the people who have it. 

I think listening to these stories, and those of the millions of other cancer patients out there, are what cancer awareness is all about.  Not the pink ribbons and decorated bras which will no doubt be marching out from tomorrow and the start of breast cancer awareness month. 

Don’t feel you need to wear a pink ribbon or buy something for breast cancer awareness, but do go home and give your boobs or moobs (because boys aren’t exempt) a good check over!

I’m serious. 

‘Last’ chemo

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.

Magpie Scientist (Poem 10)

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.

Started March 2019 finished July 2019

One of the many pages of post it notes and late night scribbles