Oh dear. The scans came back.
I was hopeful for one of two things in my chat with the oncologist:
Question: How are my results following the triple CT ?
Answer 1. Well, great news! It’s shrunk and looking better. I will chat to the surgeon and see how you look for surgery.
Answer 2. Wow. I keep looking at the report. I can’t see where the tumour was. It seems to have…. vanished!
The answer I got was:
Ummm. It hasn’t shrunk. It’s still the same size. Pretty much. But it’s good news – kind of. Some tumours keep growing throughout the chemotherapy. So you’re one of the luckier ones.
Ahem. If we don’t shrink the primary slightly away from venous area, resection may be off the table.
So – I ask “how to shrink if chemo isn’t doing much?”
“Adding radiotherapy might do it, but we won’t put you forward for that as (we believe) you still have mets to lungs”. Aaargghh.
So we plough on. But he plumps for me to have 6 more chemos to add on. So that would make 12 in total on folfirinox.
Yippee, my most dreaded cocktail
I wonder if I’ll have any hair left, any sensation left in my hands, which are really suffering.
I already have almost zero capacity to taste food, and am overdosing regularly with salt to try and taste anything. At this rate I will more likely die from sodium toxicity ….
Coroners Report
cause of death (options)
delete as appropriate
1. old age
2. heart attack
3. sodium toxicity
4. pancreatic tumour
___________________________________
By this stage I can barely feel my hands from the side effects and am living on extra Gabapentin to stop me turning into the Ice Man.
Seriously, by 11am each day – like clockwork – the current meds have worn off and frostbite has set in.
I tried to think of a medical analogy to this condition and plumped for Raynauds syndrome. My beloved composer Sergei Rachmaninov suffered from this as an adjunct to his Marfans syndrome. Boy – living in the frozen wastelands of Russia I bet he suffered a-plenty.
My neuropathy is so awful that almost anything is enough to set it off.
○ Closing the front door with the metal handle, opening the car door. Touching the steering wheel.
○ Washing hands and then being exposed to the ambient room temperature.
○ picking up metal cutlery, glass
○ and a great one – the throat. Breathing in air in the street sets off my slurry voice. Sound like a rampant alcoholic in a mere distance of 25 metres. Cute.
Then there’s the awful pain which frequently accompanies the hands. Touching anything is a further struggle. By this stage you can’t cope and need to reach again for the meds.
The partial solution is to permanently wear gloves ! I’ve been trying to find some rabbit fur gloves for my ailing hands as it’s the only alternative to morphing into a snow fox.
Busy week. Writing music scores for my gorgeous girls choir. They are singing in a festival in 10 days, and its my job to get them sounding more and more like professionals at every rehearsal.
I’ve been doing this event for 12 years and every year we push the musical bar higher. I worried slightly back in October that I might not be alive at this point, so thank G-d I AM !
Met up with an old friend a week ago who is a medic of some recognition. Over coffee we talked about my intention of tandem parachute jumping for charity. His view was this might be a mistake as chemo can weaken your bones, and potentially a bad landing at 20 mph could see me land up in orthopaedics/ trauma. (Bit of a setback if I’m still hoping for surgery at some point!)
I’d do almost anything for a bit of quiet me-time, but being potentially hip to foot in plaster of Paris doesn’t quite have the je ne sais quoi of a hotel pampering break.
So maybe something else?? All suggestions welcome.
Ok. Now moving on to cycle 6 so time to close on this one.
Jacqueline x
...When all is said and done 