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Diary: 22nd July 2014
Today we met Brendan’s Oncology team, Dr V and Taya, his temporary CNC. Tomorrow Bren is having chemotherapy for the first time.
The first person we saw today was Taya, a friendly and extremely busy young woman. Taya is in her mid to late ’20s or maybe early ’30s — she is tall and has a brown, shoulder-length bob. She seems a bit flustered and is a fast walker. She is the clinical nursing consultant filling in for Krista. We will meet Krista next visit.
Taya is acting CNC for Princeton youth cancer support services. She will coordinate Bren’s appointments and liaise between the specialists and us. She pops away often — to attend to other matters.
Brendan’s first appointment today is to have blood taken, and then we wait. About 45 minutes to an hour later, Taya finds us and speed walks us to the cancer hospital for a CT scan. We find out later that Bren shouldn’t be walking anywhere without a pair of crutches, because of the crack in his femour from the tumour. He isn’t supposed to be driving either. And he is not happy about that!
More waiting follows, and then we are taken upstairs to meet Dr V, Bren’s oncologist. This consultation takes about an hour. Dr V looks like he is probably around Bren’s age; he is reasonably tall and fit looking. He has great skin and no hair. We discover his wife is a cross fitter — common ground!
Dr V is in no rush to get us in and out. He is calm, speaks slowly and talks to us in easy to understand terms. Taya is impressed by Dr V, both as a doctor and a person, and I get the impression that she is very excited at the opportunity to be both working with and learning from him. She tells me that he specialises in paediatric cases. We are fortunate to have him on Bren’s team.
At this consultation, we hear what type of cancer Brendan has for the first time. We knew it was a sarcoma, but now it has a name, Undifferentiated Pleomorphic Sarcoma. It is a rare and aggressive type of cancer. We listen carefully to the information Dr V is sharing. I blink hard when he tells us the worst-case scenario is death. I don’t want to cry. It’s hard not to.
Hearing Bren could die shocks us both. Logically we knew that. Everyone knows cancer kills. But not my husband. I wasn’t ready to hear it could kill Bren. Then, for the second time since being diagnosed, we hear this type of cancer is highly treatable. I’m relieved to the point of feeling faint.
So this is what I heard, ‘what you have Brendan, is very rare. It is more common in children and teens than adults. And, it is highly treatable.’ I could kiss Bren and the doctor.
It Is Highly Treatable.
After the oncology consult, we have another longish wait before Bren’s next appointment. Education with Ken, the nursing practitioner at Day Therapy. He is fabulous — kind, gentle and generous with his time. Ken has six phones on him, and I get the feeling everyone wants a piece of him. He is there for staff, patients and carers and is in high demand. He seems to thrive on it.
Ken explains the process and protocol of Brendan’s treatment to prepare him for tomorrow. There is a lot of information to take in, and then he goes through all the possible side effects. I glance at Bren. I can’t tell how he’s feeling, but I’m nervous. It’s been a long day.
Sitting in the cafe of Deus Ex Machina, conveniently situated close by, we sip cappuccino and debrief our day. There is a Dues Ex Machina bag sitting on the empty chair at our table, with a T-shirt each, for the kids. I make a mental note not to leave it behind when we leave.
“You OK?” I asked
“I’ll tell you tomorrow,” Bren smiles as I squeeze his hand.
“Big day, hey!”
We finish our cuppas, I grab our purchase, and we head back to our accommodation, to rest.
Tomorrow will be bigger.
Diary: 23 July 2014
It’s fair to say we are both anxious turning up at Day Therapy today. It’s 8 am, and we are the first ones here. The reception area is a bright, airy room, with a coffee and tea bar opposite the reception desk. The furniture is modern, in caramel and coffee colours, and there are two widescreen TV’s. The Morning Show is on.
We sit for an hour before being called into Brendan’s cubical by Regan, or Reg as she is better known. She is the treating nurse today on Brendan’s team of three, who will all be checking in on him throughout the next 8 or 9 hours. She is pretty, very tall with beautiful straight red hair and rosy cheeks.
Reg has to go through the education again, which Ken had gone over yesterday. There is a fair bit of repetitiveness. We are newbies. The team needs to be sure we understand what is about to happen. Reg then explains the remotes for Brendan’s chair. She tells us one is for Bren to use, and the other is for staff. They aren’t to be mixed up, as the button on the staff’s remote is for emergency incline. She then smiles at Bren and says, “you won’t need that.”
For more information on Sarcoma and Rare Cancers follow the links below.
Grief Support — for you are someone you care for,
I find Refuge in Grief very helpful.