I have paused. I feel calm for a moment. The train is taking me, I am not driving it. Momentum is someone else’s
En route to do one final test, Timely hoop jumping will surely bring eligibility? The adrenalin and cortisol are slowing for a rest, They are exhausting friends of mine who fuel my agility.
Looking out across the fields, pondering the probability, Only days before the open label I will see and know, Recalling the last manic journey to only get placebo, Some feel deceived; I felt relieved, A reason for disease progression, A known price for future science to learn the lesson.
Whilst mostly strong, I’m aware of my growing fragility, The cancer has had time to take hold. I’m tired, aching and a little uncomfortable; affecting my ability, The cumulative chemo effects, I’m told.
Once again I feel like I’m in a race, Obstacles to go around, this time for the last space, When I reach the finish line, it will once again begin, New hospital, new journey, new side effects within.
I want to be hopeful, but can’t escape the reality of Triple Negative morbidity Is giving over my body and life for a bigger cause the ultimate act of humility?
It is astonishing how quickly 3 weeks goes and here I am back in the purple chair. Despite the smile (and the Simon Le Bon roots), this time it is with some sadness as this was likely my last day on this trial.
Yesterday was a day of mixed results. The bone scans and MRI’s were good, normal wear and tear (felt like scraping through my bone MOT), but all clear from any potential tumours. Sigmoidoscopy all good too – so just a free enema and a bit more dignity lost. Sadly though the ultrasound confirmed what my instincts and prodding had suspected. This increase in secondary tumour size plus the lump on my mascetomy scar will almost certainly count as disease progression.
There are 3 main reasons you come of a trial 1) disease progression 2) unacceptability toxicity 3) patient says ‘enough’. When they told me back in my consenting appointment I said ‘or number 4 you cark it’. My lovely oncologist, who was not entirely used to my directness or sense of humour (then) rather dryly said – ‘that’s included in number 1’.
So the next couple of weeks are going to be a bit hairy. I will need more scans (PET-CT & CT). Oh goodie! They will then have a big old chat about what to do next. The decision tree looks something like this scrappy sketch I did (yes Mum, I know the hand writing is horrendous, but as I keep telling you I have other qualities):
So this is why today was tinged with a bit of sadness. If the scans prove ‘too much’ disease progression we will apply to be unblinded from the trial. If I am getting the immuno drug and the disease has still progressed then I guess it is back to chemo only. Although I’m hoping I will be able to have surgery and/or radiotherapy to my contralateral (‘other’ to you and me) side as there is something more physical and real about these treatments even if the cells are hiding from the scanners elsewhere.
If I am getting a bag of water every three weeks, I hope to still be able to try immunotherapy via another trial. I can feel the all nighters on clinical trial databases coming on again (see Magpie scientist) and visits to other hospitals.
Whilst all this is going on I plan to distract myself with some creative projects, a VAT Return (that will be factual), some consulting work and a good house sort out. I will also continue to catch up on all the half written posts and poems I have lurking in books from the early days of the last 16 months. Expect some flashbacks to those days whilst I wrestle mentally and physically with what the next couple of weeks mean.
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.