Making time

This past weekend my parents ran their annual ‘Wake up’ seminar – so that meant they were crazy busy and we didn’t talk on Sunday.  Didn’t talk on Sunday, and it wasn’t till late Monday that we actually met up on Skype.

Somewhere between Sunday morning and Monday night I realize the following: I’m hooked on talking with my parents.

I kept checking skype for that little green bubble to appear beside their names – over and over, compulsively.

It never used to be like this. There was a time that we’d go a week or two between conversations – I was busy, they were busy, no one had time. But then I was diagnosed with breast cancer and that all changed.  We talk every day, either working together on my issues or just chatting. Even though they are in another country I still feel their support. Actually, I depend on it.

Who knows what will happen when the chemo and radiotherapy is over. Chances are we won’t chat every day. I’ll be busy, they’ll be busy, there won’t always be time. But this has been a very good experience. In some ways it brought me closer to my parents, and I’m really thankful for that.

It’s a heavy thing to take care of someone, but it makes a difference. From Zsolt doing the dishes, to friends bringing food, to talking with my parents – it’s all made a difference. I guess I’m hooked on the support, but for now that’s okay. For now I can let myself be supported.

And then, when this is over, I’ll do what I can to show my thanks.

What’s up, doc?

Last Friday, Zsolt and I met with the lead oncologist. We arrived with a list of questions, but before I could even mouth the word  “Christmas”  we had to first cover the basics.

The basics

Doctor: How are you feeling?

Me: Fine.

Doctor: Any mouth sores?

Me: No .

Doctor: How are your fingers and toes?

Me: Good.

Doctor: And your energy?

Me: Still tired.

Doctor: How’s your mood?

Me: Okay.

Doctor: And your bowels?

Me: Fine.

Doctor: What about nausea?

Me: No.

. . . . .

Doctor: Okay, let’s talk about Christmas.

FINALLY! So that ended the basics. Basically, I’m coping with chemo and plugging along. I get tired, I get sore, I get better, I go to work and proceed as normally as possible.

The conversation then shifted to how many doses of paxlitaxol are ‘enough’. Honestly, he gave the same vague answer that all the doctors have given – in that, studies are based on twelve doses, reducing that dose might/could/possibly make a marginal difference in my chances, but he can’t say for certain. It was his opinion, however, that I finish the entire course.

Blah. Okay, fine.

It was also his opinion that finishing chemo in Canada is entirely possible. He would send an email to the hospital in Ottawa, and we’ll see what they say. Nice!

I realize that travelling during chemotherapy will be exhausting. I am aware. But I want to go home, and this is a compromise.  So, if everything works out on the Canadian side of things, I will be able to see my family over the holidays. That means a lot to me.  Zsolt will drive me to the airport, an airline rep will take me through the airport, and then (with thanks a whole lotta air miles) I’ll fly first class home – where I’ll be helped off the plane and delivered to my family. It will be exhausting, but at least I’ll be supported. Plus Air Canada has those pods up in first class, so I’ll be able to lay back and sleep.

Next week we should hear more – hopefully by then the ball will be rolling.

It’s good news that satisfies everyone.  Zsolt is happy, I am happy, and hopefully the journey isn’t too difficult.

Thumbs up for a good meeting! Yay!

Eight!

Thank goodness this is getting easier. Yesterday, apart from a tryst with menopaus, went very well. Easy.


Quick aside: If you are unsure about whether to get a picc line, please let me state my opinion (this is in no way a professional opinion and yes, there are also some risks with a picc so please talk to your doctor before deciding): This picc line is amazing! The anxiety of searching for veins is gone, the anxiety of giving blood is gone, the anxiety of hospitalization followed by days worth of drips are gone. If you are having chemo, particularly any chemo known to irritate the veins like AC, and if you generally have small veins – I’d most certainly bring this subject up on your first consultation. Funny this idea is saved until the arm aches from a simple touch; in this case I think preventative medicine is the better approach (i.e. picc line), though of course more expensive to the health care system. But so is chemotherapy, so why not go ahead with what’s best for you? The picc line makes like easier. Show up, plug in, drip, unplug.

Yesterday morning I was punching things out once again, but it wasn’t having the same effect. Okay, yes, I’d feel better while punching, but afterwards the blanket of dread would fall back down. This anxiety lasted all the way into the chemo ward. I wanted to cry, to run away, to panic.

Behind the reception desk was the curly hair lead nurse. “There’s a bit of a wait, Catherine.” They know my name . . . “We’re about 45 minutes behind, so you can wait here or go off for a while.”

Given the choice of waiting in a chemo ward or going somewhere else, I will always choose to ‘go somewhere else’. We went back to the car and ate orange slices. And while I was waiting in the car, still full of my dread, I thought ‘this is the perfect time to cry’ so I spoke with Zsolt about all those sentimental things that I miss (e.g. Balaton bike rides and buying giant watermelons from the market) and let the tears work their way out.

Now I’m not saying this to complain, or because crying was so difficult – exactly opposite  — crying was easy, it was exactly what I needed to do. My emotions didn’t have a ‘reason’ for overspilling, and while poor Zsolt kept asking, “why are you so sad?”, I had no particular response. All I needed to do was cry. Sometimes the best thing a man can do is rub his wife’s back while she cries. Nothing needs to be fixed.

And after the crying I was another woman. The dread was lightened, and with the addition of sucking on orange slices for distraction, it eventually disappeared. I returned to the ward ready for chemotherapy.

In went the dopy drug and anti sickness; down went my head onto the pillow. I lay there for thirty minutes and thought ‘this isn’t so different from my acupuncture’.  Qing, my acupuncturist, often leaves me to rest while the heat lamp works it’s beautiful magic. So I imagined I was on her table with the blankets and the heat, and I did my best to meditate. Somehow that meditation turned into mentally dancing at the club with my friend Catherine – complete with disco ball and smoke machine, but the nurses were playing radio 2 in the background so I blame it on the pop music.

Zsolt sat close by reading Love in the time of cholera (but in Hungarian). And we waited.

Afterwards – drip of saline for five minutes, change of wrapping for my picc, then unplugging and done! Like I said, it was easy.

At this point I think it’s more the aftermath of chemo rather than the chemo itself that needs to be handled. Exhaustion comes and goes, along with my crazy emotions, and there are things to think about like food and cleaning and work – but I’m learning. I miss work if I’m too exhausted, I don’t cook unless necessary, and any cleaning only takes place when my body feels strong enough to manage.

Oh! The appointment with the doctor. Well, guess who is on vacation this week? 🙂 Fair enough, everyone deserve a vacation. Instead of seeing the lead oncologist I visted with another doctor. She’s quite nice, very smiley and wears cool black boots. The curl in her hair often fights back against the ponytails she pushes it into. Let’s call her Doctor Boots.

Not the lead oncologist, but still a very interesting visit. I asked her about my Christmas question and she said of course, they will always recommend the full treatment, but people do stop early and – very interestingly – she used to work at Portsmouth Hospital, and over there someone with my exact same situation would have been given about three weeks less treatment.

But,  as to which treatment is better, she couldn’t say. Apparently each hospital follows whatever approach they think best – but there aren’t any studies comparing the results of Portmouth Hospital’s shorter course of chemotherapy to Southampton Hospital’s slightly longer plan.  She can’t say which is better.

Bottom line once again: Do what you feel is best, because we can’t decide for you.

Well, I wish someone would! Doctors must be tied up in all kinds of legal obligations. They probably need to memorize a booklet called, “how not to be sued”.

Anyhow, no matter. It was an interesting conversation that helped me gain another perspective. Next week when I finally talk with the head fellow, I’ll have better questions to ask.

So there you have it. That was eight. Yay!