Hey all 👋 … UPDATED
It’s been a while, so I thought I would give you all an update on my current situ:
I have been on maintenance folfiri + cetux on and off since Dec 19 and although this regime is doing a pretty decent job on my lungs it has however left a previous Gamma knifed brain tumour to flourish. Over the last three months or so, I have been having tests (MRI perfusion to name one) to see if the increasing brain thing is tumour/ scarring/ or the dreaded necrosis (which can rarely happen with gamma knife) and it was resulted as unconfirmed. Over the last couple of months my disability has taken a bit of a nose dive (Issues with walking, balance, migraines, dizziness, constant headaches) and low and behold another a recent MRI has indeed confirmed that a re-growing brain tumour (right frontal lobe) is indeed the culprit.
So to the plans:
1, Do nada! Which would mean stopping maintenance chemo as there would be no point being on chemo if it’s no working in what is deemed a priority area and I would change from oncology to the palliative care team with a bucket load of steroids and a dog poo prognosis of a few mths!
2, Further gamma knife/radiotherapy. My team (and via brain MDT) were not overly keen to radio a previous radio’d area as radiotherapy comes with it’s own aftermath joys although it is still an amazing tool when it comes to treating the C.
3, Get it whipped out! Which is exactly what I have chosen to do tomorrow 🤯! Of course, there are risks with this too (as there are with every surgical procedure) as supposedly the tumour is quite deep in the brain and in a very ‘complex’ area and there is a chance (50/50) that my left side(leg/arm) may be permanently disabled (lucky I am right handed, eh 😉?). BUT! there is also a chance that the bloody brain thing is taken out of my cancer equation altogether! So after acting liking a petulant child for a while saying, ‘I cant do this anymore’ it is very much a chance I’m willing to take and am grabbing with both hands (well, more my right hand 😉) and If all is successful (which it will be 💪🏼) I will then go back on to maintenance folfiri + cetuximab chemo for my lungs.
So there we have it, procedure number 10 (3x lung resections, 2 lung ablations, liver resection, LAR, Ileostomy revesal, brain blob Gamma knife) is to take place on Monday 6th Sept. Papping myself a tad, but can’t tell you what a huge relief it is to be offered yet another life line! I also want to give a big, massive, shout-out to team NHS too, as without them, I’d be currently having my morning coffee with Elvis. I have been very, very fortunate throughout the last 7+ years of living with BC to have such a great team and to be afforded the treatment I have and I will never ever take that for granted.
Loads of love to you amazing lot and here’s to a new brain 😀💕
Marie
P.s. Special times with special friends alert 💕 - This week, Karen @Baxter2, kim @Lirio345 and I met up in beautiful Edinburgh and had an absolute blast! And am now very much counting down to our next girls-on-tour trip. I’m thinking Ibiza 🤔😉