So here is a step by step of what I do each day, and for the most part it is exactly the same every day.
Most of my appointments have been late afternoon, to let me go to work early on. But now I am off work, I get the day to myself! I mostly sleep and watch tele and read. Sometimes if I have energy I do a little bit of 'spring' cleaning, but I am not getting far. It's pretty boring really. Although I am thrilled my reading mojo has returned.
I usually head off to Mum and Dad's prior my appointment and have afternoon tea and chat for a bit. They live very close to The Mater and it gives me something to do, someone to talk to.
Then I drive to the little carpark opposite the entrance. Sometimes I am earlier than expected and I might listen to my podcast and/or read in the car. I do try to get in there early, say 10-20mins, because often they are ahead of schedule and I get in and out early, which is great!
I walk across the road and enter through the Platt Street entrance, walk along a short corridor and enter a large glass door to the right, this is Radiation Oncology.
The waiting room is interesting...you see all walks of life, most of which make me feel acutely aware of - no matter how crappy I feel - how lucky I am. Cancer does not discriminate! Although predominately the people are older. It is easy to get depressed witnessing other people's pain, I try to remain upbeat with a smile, and just read my book.
A radiation technician comes and calls my name and they take me to the bunker waiting room, and I sit and wait and read. This is just outside the bunker and there is usually someone inside and often another waiting in a chair directly outside the bunker itself. So when the patient inside is done, I move from the waiting room to the chair or straight in. This keeps things moving, and it is all very much precision done.
As the previous patient leaves, you always exchange a nod or hello, and if they are someone you know well, having run into them a lot, sometimes a hug. It is a very inclusive and special community.
So the bunker door rolls open, and in you go.
It is a large room for a large beast of equipment. There are 6 bunkers, with only 5 working each day, but I have only been to three of them, Zeus, Titan, and Hunter. Perfect names for the power they wield.
Each session has 2 or 3 staff working it. They are usually setting up the 'bed' when you walk in. They are always cheery and upbeat. There is a little change area, you can pull a screen around you, but really what is the point.
I put down my bag and book and take off my top layer completely. On the bench there is a pile of beautifully laundered white hospital issue pillow cases.
You take one to cover your front and make your way to the bed.
Sometimes they are ready, sometime still fixing it. This means cleaning it with industrial cleaner so it is sterile for you to get on. There are two pillow cases where you back goes, I get up bum first and then throw my legs into place and lay back. It is not a comfortable thing. Sometimes they get you to wriggle up or down a little, then you put your arms back into the arm braces.
Once you are there, you do not move, unless they need you to.
As soon as this happens I swear I always have an itch on my face, occasionally I break free and do that and you get chatted at, fair enough. Mostly I try to be zen, and think about something else. Often they have music playing, so I concentrate on that.
They start to read the numbers out and calibrate the machine to fit. This is always interesting, some are quick, some quite slow. All this means bed going up and down, left and right. Then the machine itself it brought round, and more numbers. They use the tattoos on my body to line things up, they use little rulers to measure areas. The two pillow cases underneath my back are used to move me to the left or right with ease as needed. It is quite an undertaking.
Arms in the way are always an issue, my left elbow comes perilously close to being knocked by the beast. But it never does. My right arm needs to be tied back to ensure it does not flop in the way of the lasers etc.
This can take from 5 to 15 minutes, depending on who is working.
Then they leave you, you hear the bunker door seal and the machines warm up. They move to another room just outside the bunker and can view you by cameras in the ceiling above where you lay. They start with a scan of your body, this is to ensure other parts are ok - ribs, lungs, etc etc. Sometimes they will come back in and do any rearranging of you if needed, but mostly the radiation starts after that.
I honestly do not know what happens in each part after that, I often think to ask them, when I am laying there but I don't want to hold up the process.
The round section of the beast - top of pic - swings round to my left side and presumably shoots the rays to my right side. You never see or feel anything, but you hear it. There are many different sounds. Whirls and bells and funny sounds. It stops and starts. You hear noises from the right side of the machine. Then after a few minutes the machine moves and the round section is to your right, and it goes again. Then the machine returns the round section to above you. It is all over. This is about 5 - 10 minutes. It feels much longer.
The bunker door opens, the staff return, they untie my arm, bring the bed out from the beast and lower it and I hop off. Head to the change area and get dressed.
I walk back out to the reception, get checked out, sign my paperwork, and they validate my parking, and off I go. Back out through the corridor, out the building, and to the car park.
Sometimes I have Dr's appt, they just keep you up-to-date, ask how you are, talk about side effects, and look at your skin and offer you treatment if needed.
Now I getting towards the end of my treatment, dressing my wounds is part of the experience, so rather than checking out after radiation, I head to the nurse's station and sit in one of the booths and wait. Usually not long, maybe a minute or so (they really are amazing with time!!!), a curtain goes around the area after a trolley has been wheeled in, I get undressed and the nurse - usually the hilarious and gorgeous Nurse Paul - cleans me up (mostly getting rid of dead skin at this point), then applies the special burn cream, a special gauze, then a cover. I get dressed and head to reception to check out.
I can also do this at home, but it's good to have someone look at things, to ensure they are ok. Cause the area doesn't look that ok to me.
As you can see, a lot happens in a short period of time. It is quite intense, but really not that bad at all. The driving there and back EVERY week day is the most taxing part of it all. I have had some bad days, but for the most part it has been pleasant and fine.
Also I may look and sound good, but underneath things are falling apart slightly, fatigue, nausea, skin issues, brain not functioning that well, BP and blood sugars spiking, the odd headache, mouth ulcers, mental health moments etc. But in all, it could be very much worse, and remember, I don't have cancer any more, I am so very very lucky!!!
External pic...scroll for internal pic if you dare, just my underarm from a few days ago, it's gotten worse, but it ain't pretty...
My underarm is now black, rather than grey, and peeling, the vertical mark is my scar where they removed the lymph, it is really red and angry now. The horizontal mark is a burn, again, it is pretty black now and red raw around and some skin disintegration. Boob not too bad, just pink and tender.
These things shall pass...