Thanks for writing back and for the well wishes for surgery, I’m recovering slowly but doing well. You mentioned you’re stage 4 kidney cancer since 2012, so sounds like you’ve been dealing with this for a really long time- I’m sure you have a load of wisdom to share. When you mentioned being on the last oral chemo treatment I wanted to ask what that means, but also understand if you’d prefer not to talk about it. Either way, I’m going to ask how’s it going today and how you pass your time?
Today I’ve got a friend coming by who bakes. She bakes when she’s stressed, so I’ve been receiving a steady steam of ginger biscuits, scones, banana bread etc- which are lovely. I can have a bite but can’t eat it though without pain so Thankfully my husband and boy are more than happy to take up my slack 😉
Then I’ve got an afternoon of nothing. Long stretches of nothing. I quite like being alone so have to say I’m pretty happy about it. How about you?
What’s that saying? ‘I’ll sleep when I’m dead’- it feels closer to the truth than I think they meant. Can’t sleep through, best not to fight it, instead I’m catching up on my most interesting part of the day, chatting with y’all and getting updates. It’s that or Netflix. People are usually better than TV, usually 😉
I am glad your surgery was successful and they got it all. That's a good feeling I can relate to. Your surgeon deserves a high five for a job well done. Please pass one on a high five for your surgeon from me at your next check up. And well done to you for reaching a happy milestone. High five for Claire.
I had Clexane in my thigh because they played plumber in my abdomen, so it wasn't the ideal location for 30 injections. I still have a couple of bruises left from the injections.
I'm having this vision of you looking like Uma Thurman with a syringe hanging out of abdomen while you're laying there in shock post squeal. But, up to 5, you are way ahead of me with only doing 2. My wife was very apologetic and sometimes it didn't even hurt. But I think she actually enjoyed it a little two much. All those times I forgot to buy a present...
This is the best time of day for me, but I think it's getting better as I getting further beyong the Oxaliplatin treatment. The Capecitabine doesn't seem to be causing the nausea, but I'm still learning. In total, 4 cycles. I'm half way through the Capecitabine tablet course yesterday. From next Wednesday, a break for a week, then back to the Oxaliplatin IV for round 2. i'm relieved it's a short treatment, but I hope it's enough.
I'll be back on the site more often now I'm picking up again. I couldn't motivate myself to write anything recently. This post is a good sign 😊
Take care. Sleep between dances.
Good morning Claire,
The drug I'm on now is the only one left for me to try as I've been thru all the others for kidney cancer. So when this one stops working things will just progress naturally. I'm fine with that, I've had a happy life, with a wonderful family I'm very proud of. I'm happy talking about it. Death is a part of the whole cycle of things.
We move around alot as my hubby is in the defence force, so I have quite a few acquaintances, but I too, like being alone. My day entails doing what house chores I can, then im either doing puzzles or cross stitch. Lately, I've been trying my hand at paper quilling, with rather limited success. Practice makes perfect though, right? And while I've still got time, I'll keep trying.
Have a good day.
I love Elton John. We are going to see him in Feb next year. Down in Victoria actually. So I come up with this parity to My Song. I had to share it. It even has a poo joke.
You have to sing it to the tune in your head when you read it.
It's a little bit running,
It seems to give me diarrhea
all of time.
it really aint that bad.
Oxaliplatin in my arm
was the worst I've had
And you can tell everybody
chemo suck balls.
It makes you quite frequent in
the bathroom stalls.
I hope I don't spew!
I hope I don't spew!
I just swallowed pills.
My hands feel like lightening
when I have the chills.
Now I have to learn to play it on the guitar so I can play it for friends when they come over. May be they won't get it?
I think it's a song to dance to.
Morning Tiny Dancer
The weekend is here and I'm on my own. The family is heading to Queensland without, but tonight should be good. Saturday night's alright.
You've done life differently to me. I had kids early so wine, dinner and long conversation was my pre-cancer affair. Actually, anaphylaxis ended that a couple of years before cancer. C'est la vie. Goodbye yellow brick road.
I used to think I had asthma, but as I got more sensitive to it, I realised it was sulphites and other food preservatives causing anaphylaxis. Then I turned into a snow flake; a candle in the wind. I turned into "that guy" who can't eat what other's eat and has to take his own food to parties and can't drink French wine or Italian wine (or elderberry wine) because they fill it with sulphites. I hate that guy! Now I'm that guy, I have to eat humble pie instead. But it don't go breaking my heart. I'm still standing.
Then along comes bowel cancer and ileostomy surgery and takes out a large portion of good healthy fresh foods that were staple in my diet. It's no sacrifice, but seafood! I love seafood! Life's worst joke for an ileostomy patient. It soooo frickin' stinky when it comes out. Enough to make one pass out and fall into the toilet bowl. Nobody wins.
Fortunately, anaphylaxis help me deal with a lot of the "Why-Me" before I discovered the cancer. Looking up, I kind of exhausted those emotions quickly and moved on to the big bag of "of-course-me" emotions that I'd been collecting since childhood. Those are the emotions that come with a free slow eye roll and a loud sigh as you emote it. I usually only pull those emotions out when I'm stuck watching Disney guff. I guess that's why they call it the blues.
Since my youngest just turned 18, I guess this is my freedom now. Phil-adelphia freedom perhaps? Freedom to change channel from Disney to a good musical, like Rocketman, or even Monty Python. Hmmm. Who am I kidding? I slaughtered my children with musicals and Python while growing up.
So now, she is 18 and finishing high school, she is leaving home soon, off to uni next year. She want's to be a teacher... so she can pass on Python to future generations. The circle of life.
Click on this Monty Python classic
Anyhow. I'm off to take my daily dose of chemo with breakfast. I hope I don't trip over the dogs in the kitchen.
So for you, Blue Eyes, there are 15 references to Elton John songs in this post. Can you find them all?
Excellent post Phil. Yes, I did get all references to songs along the way. Well done! I need a Monty Python marathon as it would be good for laughter.
I thought it was interesting that you had a sensitivity to sulphates. Anaphalaxis is a very dangerous dance and one I've never learned. I do have a terrible sensitivity to preservatives and food colourings whih developed over the past 10 years or so. I've always cooked from scratch but I found if I ate someone else's food I'd get a terrible nerve reaction. Restless legs, hot feet and inability to sleep. I've had to be really careful as to what I eat out. Once it was from a particular wine.
Since being diagnosed with the C word. I've wondered about what we have in common with other patients. I don't think any doctor takes a good history. I have never liked the taste or smell of coffee or milk. So have abstained from these completely. Probably have had alcohol two or three times in a year. Not a big drinker. Really big on healthy and fresh food. CSIRO diet believer. Have all the books. Genetically? No history of cancer in family. The cancer I have does not have a genetic link so that's really good for my children. Pretty fit and have practised Tai Chi for past 20 years. Stress? Yes. Huge amount last year from two different things all at once. Mother's death, brothers contesting will - long legal issues, legal issues selling business, financial worries were all big factors. All sorted now but it was probably the most stressful time in my life. My plans for this year were to retire, stop Tai Chi, have no commitments or appointments. Have time to myself without any responsibilities for the very first time in my life. It also gave me time to sort out a swollen gland in my neck. This has given me heaps of responsibility, appointments and on-going stress. Not quite what I had planned for this year. To look at it positively though, I'd made space to deal with this quickly, get the best possible outcome (all clear edges at biopsy) and the lowest tumour rating.
Is it the A type personality? Manage everything, super organised, juggling many plates all at once. I think Claire mentioned that was her as well. Am I just trying to find something to blame? Possibly. I don't know why it keeps going around and around in my head as to why this has happend.
Good news - I am 1/3rd of way through Radiotherapy treatments. It's a long haul though. Every day. My energy levels are still good, sleep good and skin intact. All attendants very happy with my progress. Discharged from Plastic Surgeons as healing is excellent. Two month appointment with ENT as he's happy with recovery but just needs to see me again to organise new dentures. Then I'll probably go to 6 or 12 monthly reviews which is excellent. Surgeon thinks I will have no further problems in the future and that is as good as news gets at the moment and I will dance every day from now on to whatever the song is.
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