I quoted this to a group of doctors recently, and two jumped up in delight, then announced they would have to steal my words in future….one wrote it down so he’d never forget it. Really? Where have these guys been living? In text books no doubt. I was gobsmacked to think they believed it was an original quote from me!!!!
The reason for the previous title of Mellow Yellow was due to the colour of the new chemo…a bright passionfruit juice colour of yellow…looked rather yummy in the IV tube actually. Called a very unromantic and less than tasty name, Methotrexate has to do the job for me now. It’s running mate is called Cytarabine and I’ve read all the blurbs about it. All the warnings are the same of course but I feel it’s going to be very different to the previous gun toting Epoch boys, Eric and Oscar.
I have never delved too deeply into stuff like this, even when studying all those hundreds of years ago when I worked for the Commonwealth Department of Health heading up restricted authority script requests from some pretty idiotic doctors and so called specialists – they refused to observe the guidelines but I was strong enough to haul them back in line…..as a result, in hindsight, I didn’t inadvertently hurt or miss-dose any patients when I was in charge of authorising narcotic and dangerous drugs to top level cancer etc patients and addicts.
This was pre computer authorities, ( yep in the dim dark pre lit screen days), and with the relevant information gleaned from the script or a call to the doctor requesting the drug, no pregnant woman was given a drug that had harmful possibilities to either her or the baby..no drug addict got a ‘free ride’, and no other very ill patient was incorrectly dosed. Mostly done by intuition and understanding how chemicals can work well together but must be monitored and consideration given, as they fight a good battle against each other too. So that is all I will say about this kind of guff which is pretty dull and boring, but has firm control of my well being right now.
Recently the realisation hit me that my complacency and ‘let’s go along with the medical team’ attitude has rather taken over my usual feisty, independent and determined nature. Never have I been one to think doctors are gods of any kind. Rather the opposite as over the years since starting out as a very innocent kid of 14 into the nursing world, I have met some brilliant, some dumb, some arrogant etc etc doctors who thought the world should bow as they passed. My comment was usually ‘He’s just a man’. I firmly believed they got to bury their mistakes without a backward glance of regret in most cases. The two doctors in my lifetime as a patient who have always held my utmost respect, are Nick Antonas in Perth (he saved my life when I was bleeding to death in the 80s), and Todd Silbert whose Dad I knew well from the fashion world. It helped that Todd is a blonde, tanned, fit surfie and top quality eye candy!!
No doubt due to the terrifying news of this insidious disease invading one’s body, and not having a crystal ball full of answers, my independence took a huge backward step leaving my brain trying to process information from all sides. It kinda worked for a while and things progressed well until the 4th course of Epoch. As I try to recall, the doctors I saw in consultation at that time changed relay batons and somehow the information wasn’t given about the cells breaking through after apparently having been beaten.
After our first consult in the ward recently with Curleigh and his buds, we were reeling with the impression of bugger all hope for me. Next morning though a welcome visit from a favourite doc from the chemo ward brought my senses out for another peep around. You may recall my speaking of a very Asian in appearance doc I decided to call Sam, because his name Su wasn’t fitting in my crazy views. He has the best Aussie tradie accent ever and is so genuine, down to earth and to the point. Standing with his hands on his hips, looking so happily refreshed from his month’s honeymoon in Spain, he demanded to know what the hell was I doing in here again and to his disapproval looking a tad beaten. What a huge bump to my attitude! Much needed obviously and at the right time. I confided my research that morning and things I intended to query with Curleigh later….Sam nodded vigorously the entire time I spoke and the encouragement and brightness in his eyes hit me like a sledge hammer. No negativity in Sam for me.
By the time the main team arrived looking very professional, sympathetic and a tad aloof, I was ready for answers. Disappointingly though, one of my all time supportive and favoured doctors was in a negative space in spite of the sad puppy eyes-head on the side in complete listening mode-all attention given but reply already formed stance. I offered my theory on the time I believe this lymphoma had been lurking in the background lazily waiting for the day to show its face. Instantly shot down in flames! Text book crap rolled from her curled lips. The negative and slightly belittling response was booming through the room but others seemed to be oblivious to it all, chatting amongst themselves.
Now it’s possible my theory is naive. Quite possible. But maybe not probable. I recall one of my stock diplomatic answers for my kids and staff alike over the years when they were asking for something a bit out there, ‘It could be possible but perhaps not a probable outcome. Let’s wait and see’. A reply such as this would have been so much more welcome. Nurses who visit my bed on a regular basis for a catch up and a giggle, agreed with me. After a few hours to rest and think, discussions with Tim, reconsideration, a pep talk with my roomy who has been to hell and back on her terms, and a lot of weighing the dices, I knew what I wanted to do. Where there is life there is hope…and hope brings possibilities of good outcomes. My time here on earth deserves the chance to carry on for however long I might be blessed with.
A message from Tim’s cousin in Victoria also spurred me on. Mary’s husband has been battling this disease for some time and was given the worst case scenario too, but he has opted to fight on and currently is in remission and enjoying his life. It was the message and inspiration I needed at the time. If Matthew can keep fighting, why not me?
So the first lot of chemo has been given along with countless drugs trying to keep me on an even keel. I can feel slight rumblings in my mouth already which is ensuring my cleaning of teeth and the mouth washes are very regular. I don’t want to suffer that horrendous trauma again if I can possibly avoid it. There are many more days in the cycle to go yet, so I intend making it as easy for me as I can….I don’t enjoy pain or feeling weak and helpless and sick.
Today is a good day. My hands are weak but I am still mobile and independent. I’m now eating Halal food would you believe because the dishes are spicier and tasty rather than the gooey glob on offer otherwise. The food arrives in disposable plastic or foam containers which don’t stink of previous meals and fluids …those thermo plastic dishes are good in theory but the hot water in dishwashers obviously pit the walls and the aromas lurk. That makes it impossible to even pretend to enjoy eating the goo at any level. The tasty dishes may have to be scrolled back a bit though if the mouth hurts too much. Catch 22.
My roomy Kate the journo went home yesterday, I missed saying goodbye being stuck in the middle of an LP procedure which went well….let’s hope the results are favourable today or tomorrow when they come along. Kate and I will be in contact though via email, twitter, fb, blog etc. I do hope she is enjoying her day today with her pups…we miss our babies at home so much.
A social worker came today to have a chat with Tim and I about how we are coping. It’s good to chat with a straight forward person like Sophie, but the way Tim and I have always communicated and talked stuff through has brought us to a place where we are coping pretty well. We can still giggle at silly things and enjoy a good chat about the world events, family contact and so on. Our marriage has always had this firm base.
So currently it’s a day at a time. I should rest more than I do, but today so many visits and discussions have begun to wear me out. So I shall share this warts and all and try to get a nap in before the next thing. The ward consultant is due soon they say, and I’ll bet it will be just after dinner has been delivered. I don’t like my cup of tea being luke warm by the time they wriggle on, but Tim always makes a nice hot cup of tea when he arrives.
Looking forward to catching up with Tim’s brother Barry and his wife in a week or so for a visit before they fly back to Perth.
I give my thanks as always for the loving support, messages, caring and encouragement you all offer me. It truly helps me so much. I am blessed in many ways.