Still I’m on this wacky road when you get told you need to have whole brain radiotherapy next… Oohhhh !!, this is getting bad…I just have to stick a pin in my plans for the moment…tackle another impromptu hurdle…
This is how you radiate your face. Anyone claustrophobic? At the plotting session they pull tight this warm plastic mesh around your face and clamp it to the bed to hold you in place. Momentarily panic ensues for a few seconds as I imagine this might be what ‘waterboarding’ feels like. But then I can breathe, phew! (albeit through the tinest holes) Calm, relaxing thoughts whilst the mesh hardens in 6 minutes moulding your contour to the millimetre. It is cool and rigid and your ghost is moulded. A lot less like Casper, but just as friendly.
Click the title to see how I got on.
I knew in my gut that I would eventually have to do chemotherapy again. It was never a question of if, but when. I live under the false hope that if I feel ok and am in no pain then I am fine. Call it a form of ignorance or coping mechanism? What scares me more is not the thought of going through chemotherapy again but the fact that doing it now or delaying it until later will not change the inevitable outcome (though I am determined to defy this!).
We do what we do in life to move forward, to having a future, whatever that future may be, in the hope that it will be wonderful, a reward; the ultimate meaning that makes sense of everything, every decision, every aspiration, every desire.
I suppose for me it is the lesser of two evils in the end. The fact that I do not feel my cancer is unnerving but at least allows me to get on with my life. Is it weird that my body is hosting this thing and allowing the cancer to thrive and at the same time letting me function normally on a day to day basis? It is luring me into a false sense of security that I am fine. This is my hand to play with it’s poker face.
Did I ever imagine the day I would be self-administering my own injections? Well, the days are here and have come to stay….
Once again my path is rerouted. This week’s consult is turning the deepest abyss of my gut, again. Reaching a cross road had put me in reflective mode again and then today presents itself and there is a snap back to reality. The Gemcitabine has not worked to the extent my doc had hoped for. So they offer me an alternative.
Today I started Cyclophosphamide (Chemo tablets), with Prednisolone (Steroid) and Propanolol (Beta blocker) for my “multi-focal” mets. One week on, one week off regime for as long as it helps, if it helps. With this, 14 more sessions of radiotherapy distributed at 3 sites to treat my external sarcoma catchment area: my cheek, shoulder and a spot on my chest wall, to try and keep the tumours contained. Keep everything crossed! We don’t do things by halves here in Sarcoma-world!
In this poem I wrote in autumn 2014 during my 1st ever chemo cycle. I ended up writing one after each cycle – it was a creative outlet for me and something to distract my mind and pass the infusion times.
When there was no one to talk to, I got inspired by the things I saw and heard in the room. Each poem marked another milestone in my journey accomplished.
I’m not sure how much sense it’ll make to you but I hope you enjoy. Click on the ‘title’ link to see the first, should you feel so inclined.
Heart rate 132bpm in overdrive, temp 410C, Feverish, I was admitted to the oncology ward at UCLH after becoming Neutropenic. My white blood count had taken a beating fending off the chemotherapy and was unable to fend off an infection created by a tooth abscess I never knew I had! 5 days on intravenous antibiotics, a platelet transfusion and a stern internal musing with my tumours…I reached a compromise…
Where it all began, I call it the new beginnings. Kind of.