Yesterday, Geoff and I drove down to Sydney for what turned out to be: lungs, lunch and violin.
Well, that’s quite an over-simplication. Or, what you could call: “the bare bones”.
Starting with the lungs…
Every three months, I have routine lung function tests followed by an appointment with my lung specialist to monitor the spread of fibrosis in my lungs and to manage infection and any other lung nasties. While my lungs aren’t great and I have about 60% lung volume at the best of times, the fibrosis has been pretty stable for the last two years and I even get the odd improvement. So, these appointments aren’t all doom and gloom and we usually have a few laughs with my specialist.
However, there is no denying the reality of these appointments. My lungs are my weakest link and so we’re pretty much staring straight into the face of fear, eye-to-eye, without so much as a blink. We are probing the depths, trouble-shooting and coming up with a detailed defense strategy. This is very sensible and naturally the more you know about your enemy and yourself, the greater your chance of victory. However, at times, these conversations hit a nerve and it’s like plunging a knife in a very raw wound and it’s not surprising that I completely freak out and leap out of my skin. Who wouldn’t?!!
Although I’m tougher than I used to be and am somewhat resilient, I’m not made of stone. I crumble and fall apart just like anyone else and wish I could cry. Cry buckets of tears but the well has run dry.
The key outcome of this appointment is that I need to start dropping my prednisone further. This is supposedly good news. I keep telling myself this is good news. That means that I’m doing well. The disease is being managed and the risks posed by the medication outweigh the likelihood of the disease flaring up. This is what I want.
I can say that more than 24 hours later when the dust has settled. However, yesterday I was beyond terrified and wanted to boot some poor innocent hermit crab out of it’s shell and move in. Lock myself away and shut the door. Never come out. I really had to remind myself of all those things you need to do when your journey hits a snag and the wind goes out of your sails ie walk, get some sun, play my violin. EAT CHOCOLATE!!
We are now getting pretty close to that invisible line where the disease starts to reclaim lost ground and if it isn’t managed like the precarious house of cards that it is, I could literally come falling down. Have a flare. Of course, this possibility terrifies me and for good reason and I feel like I’m about to drive a car over the edge of a very steep cliff and the waves down below are just waiting to wrap around me. Pull me under.
I don’t know how likely it is to go pear-shaped but my doctors seem reasonably confident. This would suggest that all my flapping around is mere “catastrophising”, even though I still see it as healthy self-preservation. I should be right dropping 1-2mg gradually over a few months but then the real test is on. They’re trying to get me down to 5mg. At this point, I’m very inclined to quote Darryl Kerrigan from the classic Australian movie: The Castle:
“Tell ’em they’re dreamin’.”
But sometimes, you need other people to have a bit of faith in what you can do and what is possible. Sometimes, you need that outside reminder and jolt that your dreams really can come true.
So, it seems, I have to swallow my own medicine and take a deep breath and swing from the chandelier!
However, our day was not all doom and gloom!
After dealing with the lung monster, Geoff and I headed down to Sydney Harbour for lunch at The Kirribilli Club in Lavender Bay. This was the perfect antidote. I chose this place due to its sweeping views over Lavender Bay, Luna Park and the back of the Sydney Harbour Bridge. We could see the planes coming in to land in the distance and the ferries chugging their way through the harbour to places like Manly, Balmain and Kirribilli. It was so incredibly relaxing and the perfect antidote for a stressful morning. I still felt agitated inside, way too much like a churning washing machine but I could also feel that calming salve mounting a counter-offensive and could almost relax. Watching the water is so good for that and so incredibly therapeutic!
By the way, I should mention that it was unseasonably cold and the wind was whirling around, slapping us in the face. Yes, it hurt!
I was mighty glad I hadn’t got around to packing up my Winter clothes because woollens are back on. Indeed, where are my thermals?
After lunch, we went up to my parents’ place to pick up the kids and have dinner.
I’d packed my violin and decided to have a bit of a jam with my Mum who is an accomplished pianist. She’s taught the piano for many years and now that she’s retired, plays in The Lyric Trio with a singer, clarinet and her on piano. They play at Nursing Homes and retirement Villages, pretty much out o the kindness of their hearts.
Playing with my Mum was a huge step for me. While it sounds simple and natural enough, I’ve only been playing for 3 years and for the last 12 months, I’ve been struggling to keep up with my practice, especially given the ups and down with my health. The violin is a very demanding instrument and it’s not easy for anyone to develop good bowing techniques and get those awkward, uncooperative fingers to behave and find exactly the right spot every time. When you mix these difficulties with someone else playing the piano, my mistakes become horribly magnified…especially to a trained ear!! These mistakes aren’t anywhere near as fatal when I’m playing alone. Sure, I know it doesn’t quite sound right but there isn’t that discordant clang, which is almost as painful as fingernails scraped down a chalkboard.
Just to exacerbate my violin battles even further, my bifocals were struggling to read the notes and I was making more and more mistakes. This infuriates me, of course, these mistakes aren’t “me”. Or, at least, not a true reflection on my playing.
I’m sure I can hear you pondering about me and the bifocals and wondering how they fit in since I don’t wear glasses but is a sin of omission ie taking my glasses off for photos really such an unforgivable sin?
I think I’ve just stumbled into another post.
Sounds like a good thing to cut back on the nasty prednisone…sounds like you had a wonderful time in Sidney after the doctor….great views of the bay….I have my fathers violin, I have yet to pick it up, but its on the list….I am sure your mother was thrilled to have you playing along with her….XXXkat did the sun get there????
No. Sun still AWOL. Not expected back for at least a week! Have a go at the violin. It will take 6 months to get over the hump but it is so worth it.
thanks…first I have to put the strings on it….LOL my son in law plays the cello and said he would help me…thank god I play the piano and similarities???
Pingback: #Weekend Coffee Share | beyondtheflow
Best wishes for steady improvement, Rowena–
I have already commented on your health, lunch, and duet playing with your mom elsewhere, so I’ll just repeat that I’m glad you’re doing well and had a great day!
You’re young for bifocals. I have bifocal contacts-I love them!
Good for you to take off your specs for pics
sorry to hear about your lungs –I have asthma but think your situation is worse. I started playing violin and mandolin and guitar at 18 for that reason. I still can play sax just lack of time, trying to make time, but decided my instruments were strings, even got a piano few years back that I love. Keep up the violin, was difficult the intonation the first year, but since I know to read music, went into it with little problem, also was in the orchestra in college. Good luck.
Rowena I was so happy to hear your progress and having a nice lunch on the harbour to celebrate is what I would do too. It must be such a challenge to trust in the specialist and I understand your fears. You are an inspiration, can you make a video of some of your violin music?
Thanks very much, Kath. It is challenging and it’s really hard to keep going back and calming my nerves over and over again, particularly when I feel like I’ve got it sorted. I’ve moved on. I’ve got it together. I know this is a much more realistic and honest experience than what you often hear about people conquering everything after overcoming a set back. That just hasn’t been what I’ve found to be true. I’ll record my violin for you and email it in the next week or so. Love & best wishes,
Dear Rowenna….l enjoy reading your writing…and have wanted to contact you for quite a while ….we have something in common… we both knew your grandmother..Eunice…I studied piano with her at the conservatorium from1963 (age 14yrs) for many years and have now been teaching for more than 53 years and still loving every moment.She arranged for me to work in your grandfather’s dental surgery in Macquarie street(she thought I needed to broaden my life experiences).Her childrens’ ages ranged from 18months to21yrs….Paul was studying dentistry and worked sometimes in the surgery….Marilla was at school.I can see where you enherited your writing skills…your grandfather just loved reading and couldn’t have enough books.He would spend hours composing a letter.Your grandmother had a big influence on me and played a huge role in my development , both as a pianist , teacher and a person.I refer to her frequently in my teaching .To me she was very special.I have a lot of wonderful memories of your grandparents.Regards…..Chris Dixon
How exciting to hear from you! I had goosebumps reading your message. I was very close to both my grandparents and miss them both very dearly. I would be very keen to get in touch with you but thought email would be more appropriate. My email is: rowenanewton at outlook.com
It is interesting what you say about her encouraging you to expand your life experiences as she seemed to mentor her pupils and those around her in quite a holistic way. My Dad used to read all the time and she got him playing tennis. I learned from one of her pupils Patricia Gaut and she encouraged her to go on an art retreat one weekend and she took up sculpture. I remember her looking at me over a tea cup and told me I was a performer. She was right and I see the same in my son. He runs around the house singing and life is his stage but he hasn’t woken up to that yet. My daughter was born on Eunice’s birthday and performs in her school choir, which has given her quite a lot of opportunities. Anyway, I’d love to hear from you. Best wishes, Rowena