Well, my guest post has appeared on Jodene’s Blog. I’m not sure why it took me so long to write and why I haven’t written anything in such a long time. But now that I’ve finally started again, I’ll be writing more.
OK, after almost three weeks, I’ve worked out what to do.
For those who came in late: I’ve been asked to write a guest post on someone else’s blog. Now it’s not just any blog, it’s a special blog – Jodene’s “Project Me” blog. Jodene has written a post every day for the past 507 days. She has a ton of followers, she writes “With courage, consciousness & a sense of humour”, and she’s been a real inspiration to me in my little blogging adventure. But I haven’t been able to work out how to condense my story down to one thousand words.
Well, I now know what I’m going to do, and I’ve already started. I’m not going to tell my whole “cancer story”; instead, I’m going to write about the frustration of being a cancer patient. There’s been a lot written about the pain, the suffering, the trauma, and the horrors – and I certainly don’t underestimate them. But I haven’t read much about the frustration, the niggly little annoyances, the silly thoughts you have, and the mind-numbing conversations you find yourself participating in.
So, stand by for my post – The Impatient Patient – coming up soon…..
I have an interesting dilemma. I’ve been asked to tell my “Cancer story” (sounds good, doesn’t it?) as a guest post on someone else’s blog. Great, eh? Well you’d think so…. And it’s not that I’m not excited as all hell to be guest posting, and it’s on a blog that has lots of readers, and it’s a terrific opportunity to get more exposure, and all that. But…. I have to do it in around 1,000 words. Gobsmacked!!!!
So far, the story as I’ve written it here, is around 7,000 words – and it’s not completely finished either. So, that’s my dilemma.
- How do I condense seven to eight thousand words down to one thousand? Don’t know.
- What do I leave out? No idea!
- Do I do it dryly without the humour? No, that’s what attracted people in the first place!
- Do I even try to condense it, or should I just start from scratch? I don’t wanna!!!
- Or, do I just write and at 1,000 words just stop, you know, like mid-sentence? It’s tempting… 🙂
What do I do, everyone? HELP!!! I would really like some suggestions, particularly from those of you who are writers, but also from everyone else.
So what would you do if you were me? What suggestions do you have? What advice do you have for me? What wisdom can you impart? Please leave me a comment – I value your input!
THE ROUTINE – PART DEUX
When I left you all last time, before Helene provided her perspective and before my little wine tangent and book review tangent, I was talking about my hospital routine during those days that my remaining “good” kidney was trying to pull itself up by the boot straps. I will, by the way, keep travelling along those tangents more regularly in due course, but first, let’s return to the hospital for a little bit.
The Choice – So, it’s morning, I’ve eaten breakfast, and I’m not yet well enough to walk or do much. It then becomes a choice between reading the newspaper and watching TV. Now remember, I have to make that paper last for the next 18 hours or so, which is not that easy – it’s mainly pictures. For those of you who are too young to remember or are overseas and never really knew, this paper – the Herald Sun (affectionately known by some as The Hun) – actually used to be called The Sun News Pictorial. Its name has now changed. Its quality – well, what can I say? …… the pictures are better?
Morning Television – So I invariably choose TV. Morning TV in Melbourne is awesome! NOT! Remember, there are five channels. Two of them have absolutely identical morning magazine-type shows. When I say identical, I’m not kidding. A handsome man and an attractive woman anchoring, making little snide remarks at each other, all in good spirits. Another attractive woman sits at a desk on the side and is a touch more serious because she presents the news. And a number of outside correspondents present little snippets of “interesting” information about the latest diets or the latest houses which have blown away in a freak wind or whatnot.
And just to annoy us poor punters at home – or in the hospital – the shows seem to be totally synchronised with each other. When one has an ad break, the other one does too. So if you’re a channel surfer like I am, there is no escape from the ads.
Two of the other channels have children’s shows. But where are most children at this time? On their way to or already at school! So, these shows aren’t meant for those little sophisticates. No, they’re aimed at pre-schoolers. Innocent little cartoons on one, and on the other – bright and bubbly young men and women dressed in bright and bubbly colourful overalls speaking in bright and bubbly tones with constant wide bright and bubbly smiles….. and talking about bright and bubbly things like Wheels of Busses Going Round and Round and Bananas in Pyjamas Coming Down Some Stairs!
And finally, we have a channel which has good, serious, hard-hitting, and credible news ………. in Greek, or Chinese, or Turkish!!
An hour or so later, I’d wake up!!!
And so the mornings would go – look at some pictures, watch some TV, doze off, wake up – on and on. They were going to bore my kidney into submission. Zis time, Herr Kidney, you vill get better or ve vill beam more Australian morning television at you!!!!
My Parents’ Visits – By now it’s lunchtime. I looked forward to this time because that’s when my parents come for their daily visit. This whole drama was hardest on them. My father is 82 and my mother turned 80 four days before my first surgery. Now they are pretty healthy and very fit and get around really well. But this whole thing really knocked them about. First, the suddenness of it – you know, one day we’re preparing for my mum’s 80th birthday party, the next day I’ve got the Big C and I’m getting ready for an operation. Second, the magnitude of it, especially the kidney failure. Well if it scared the shit out of us, you can imagine what it did to them.
They came every single day at around noon. If I was asleep they’d just sit there and I’d wake up and see them, and I knew all was right with the world. We wouldn’t necessarily talk a lot, and they didn’t always stay long, but it was one part of my daily routine that kept me sane.
My father, who I’m convinced must have wanted to be a doctor back in the day, would ask about all my numbers – What’s the creatinine level today? Are they checking platelets? And he absolutely loved that Hospital Hand Wash Gel thingy, a bottle of which was in every room. He’d use it every 10 minutes or so.
My mother would come in, say hi, and then disappear to the hospital cafeteria for 15 minutes to get a snack, I suppose. One day, after not having had a good coffee for about 4 weeks, I pleaded with her to bring me one. I really had to beg because she wasn’t sure it was a good idea. I finally convinced her that one little cup wouldn’t hurt, and she returned with it. It was the best long black I’d ever had, although if I were you, I wouldn’t go rushing off to the Cabrini hospital cafeteria for a coffee. It is possible that my judgement might have been slightly impaired at the time…..
The Afternoon – After lunch, just for a change, I’d usually take another nap, and then get stuck into the afternoon TV – basically old cop shows and more news bulletins. I’d also try getting excited by the Herald Sun’s daily quiz and crossword and Sudoku puzzles. Are you getting sleepy yet, dear reader? I am, just remembering those days!!
Treatment & Recovery – Throughout this time, I’d have my blood pressure taken hourly, my blood sugar taken every two hours, and full blood work done twice a day. And since I was still having some kind of magic fluid continuously pumped into me intravenously, they had to tend to the cannula – the sharp needly thingy that gets inserted into the vein and attached to a tube. Hospital policy is that the cannula has to be taken out and changed to the other arm every three days. This recannulation process could take anywhere between five minutes and half an hour depending on the experience of the nurse. It could get quite funny because with both cannulation and full blood tests, another hospital policy is that you only get three goes at it. If you don’t succeed in those three, you have to call another nurse or doctor and let them have a go. It reminded me of a baseball game and every time they didn’t get it into my vein correctly, I’d quietly whisper “Steerike One!” or “Steerike Two!” under my breath. I never pitched a no-hitter, but I reckon I had a pretty healthy ERA…
And importantly, my creatinine level did start going down. If you remember, a healthy level is between 60 and 110 µmol/L (don’t ask me what those units actually mean!). Mine was at around 450 µmol/L at the beginning of this adventure. By the time I was really present to what was going on, Marco (the renal magician) had managed to get it down to around 200 µmol/L; and every day, it went down a little further.
I also started feeling better every day. In fact, the more bored I was getting, the more I knew my health was improving. Interestingly, I’ve found this period the hardest to write about, and I think the reason is precisely because once I started improving everything tended towards routine – tedious, boring…
I still had my moments, but by the end of May it started looking like I was going to pull through!!
Post by Helene Goldberg, continued :
The next few days were, as you can imagine, pretty intense. Apart from just being at the hospital to be with Moshe as much as I could, I had several other jobs to do. First and foremost, I made sure that our children, Moshe’s parents, his sister, and my mother, were constantly up to date with the latest on Moshe’s condition, both physically and … What do I call that? Emotionally? Mentally? Just how he was in himself. I think that kinda says it.
MY JOBS | No. 1: Our Family and Friends
I also called our closest friends and cousins to keep them up to date as well. It was really important to me that they knew what Moshe was going through, and I needed to create a really strong network of support around us. I either called or texted – thank god for mobile phones! – every day to those 20 people. There were so many others who called me too, or texted or emailed, or sent a message on Facebook, and I answered every call, returned every message. It was important. If we were going to get through this, it would be on the strength and shoulders of our community. Speaking with our friends and family gave me strength. I needed to be strong. Oh god, I needed to be strong. I needed to be strong for our children and our parents, as well as for Moshe. Suddenly, I found myself holding our world in my hands. Our world, the immediate world that Moshe and I lived each day in. Our social lives, our family lives, our financial lives – oh, imagine this…
MY JOBS | No. 2: Our Finances
Moshe’s mobile phone rings. (I was the keeper of this phone now. I’d walk around the hospital wards with two mobile phones in my hands – mine, and Moshe’s.) It’s one of the 17 million banks Moshe has accounts with. They want to speak with Moshe. I tell them I’m so sorry, but he can’t come to the phone. I’m his wife, can I help you? Now, I know full well why they’re calling. They want money. Why else does a bank call you? It’s either to offer you something that will cost you money, or they want you to pay your bill, and in this case, it was the latter.
The Bank: “Oh, no problem, we can only speak with the primary account holder. We’ll call back.”
Me: “Hold on! Don’t hang up! He won’t be able to talk to you for a few weeks now. He’s in the hospital, …” and I’d pull the Cancer Card. And the “Failed Kidney Card.” And the “Life-Threatening Card.”
The Bank: “Oh, I’m so sorry about that. Ask him to call us when he can.”
Me: (to myself) WHAT THE….!!!!???
Me: (to the idiot on the phone) “I have Power of Attorney. You should talk to me.”
It was amazing to see who would actually say, “OK, great” and then proceed to deal with me about our accounts, and who wouldn’t, saying they can’t, it’s a matter of confidentiality, and they are bound by their code of ethics, blah blah blah.
Me: “I know we’ve missed the monthly payment.” HE ‘S IN THE HOSPITAL! HE CAN’T DO IT. IF YOU TALK TO ME AND TELL ME WHAT YOU NEED, MAYBE YOU’LL GET YOUR MONEY! I felt like screaming at them, but I kept level-headed about it. I had to. I had to be vigilant about my own temperament. I couldn’t afford to lose it about anything. It wasn’t a matter of, how did Tom Wolfe so brilliantly say it in ‘The Right Stuff‘, “maintaining an even strain.” I had to keep letting go of things, letting go of upset. Letting go of any anger, or frustration. Letting go of my worrying. Letting go of any emotion or thought that could bring me undone, so to speak. I had to stay clear-headed, for Moshe.
It was exacerbating. Exhausting. Every day I’d go through the same thing with one bank or other. See, in our house, Moshe did all the financial stuff. I’d done it before, but when he came back from living in the US, he took it over. Brilliant. I hate that stuff. I don’t have a financial bone in my body. Great. Except now, I had no idea what our set-up was. And it wasn’t just a matter of one or two accounts. Moshe had all his business accounts, overdrafts, mortgages, investment stuff. And suddenly I had to know about it all, in one fell swoop, so I could talk at least with some semblance of intelligence to these people.
So, I’d talk to them, ask them to give us another few days, tell them as soon as I could I’d work things out and get in touch with them. I sent copies of my Power of Attorney to them, expecting that’d make the difference, surely now they could talk to me. Some yes, some no. The bizarreness and unworkablilty of the banking system was right in my face, but that’s a conversation for a whole other post, for a whole other time. But you know who was brilliant? Really easy to work with, co-operative, pleasant, and just great? American Express. “My life. My card.” You’re not wrong. Thank you AMEX!
MY JOBS | No. 3: Everything Other Than Moshe Himself
Yep, now I was managing Moshe’s business. Luckily, I’d done this IT recruitment before, so I kinda knew what I was doing. I called all Moshe’s clients and consultants, filled them in, assured them nothing was going to change, we were on top of it all, if they needed anything, anything at all, please call me. Or Sarah. They were all really great. And very exciting, I managed to complete a contract extension during this time. Amazing. Anyway, lucky Moshe was in the business he’s in, it could kinda run on its own, and wait till Moshe was ready to step back in. Whenever that might be. Freda, Moshe’s sister, handled all the admin stuff, and Sarah kept on keeping on with her placements, and the whole thing seemed to hold together OK. Phew! Breathe.
MY JOBS | No. 4: Moshe Himself
OK, OK. I know. You want to know, “But what’s happening with Moshe through all of this??? Enough about that other stuff! Tell us about Moshe!”
Now, this was one of my jobs that could be quite challenging in itself. I didn’t have to worry about his physical care. In fact, now that Marco was on the case, I completely didn’t have to worry about whether the nursing staff were doing their job correctly. You know, was he getting his meds at the right times. Was he being washed, were his sheets being changed in the right times. Were they checking his vital statistics, speaking with the doctor, feeding him the right food. None of that was a concern for me. Sure, I’d observe, but I didn’t worry about all that. I was more concerned with Moshe himself. And that was quite absorbing of my time and energy. Although not without its numerous moments of entertainment.
You know, Moshe and I have been together since I was 15 and he was 18. We got married when I was 21 and he, 24. That was 33 years ago. We’ve lived in two hemispheres, moved around so much, travelled, dealt with hardships, and enjoyed magnificent times. We’re madly in love with each other. Yeah, still after all these years, and we’re great friends. But nothing prepared me for how much he needed me in those weeks. Still now too, as I write. But definitely in those weeks in the hospital. I guess it’d always seemed to me that I needed him more than he needed me. Not like a bad thing, just a fact. He was the strong one, I thought. The one who was a man of the world. Understood how things worked in the world. You know? And here we were. And he needed me with him.
I mean with him. Not just in the room with him, but WITH HIM. So when the phone would ring – be it a bank calling, or Sarah needing to talk to me about some business thing, or my cousin calling to check in – I’d have to answer really quietly. Not because he was sleeping, but he’d say, “I don’t like it when you’re on the phone. Don’t talk to them now. You’re always on the phone. Do you have to answer it???”
I knew what it was. He wasn’t being ornery. His mind couldn’t hold all that now. I couldn’t bring that world into his space, his financial stuff, his work stuff. And hearing me on the phone, he’d get present to it all, and the fact that he was completely helpless to do anything about any of it, let alone even consider it for a moment. He’d start worrying, and he couldn’t do it. It wasn’t good for him now. His blood pressure couldn’t go up. His kidney wasn’t functioning. His heart was at risk. He couldn’t have that stuff anywhere near earshot, or in his thoughts. He didn’t have the wherewithall to even begin to deal with the massive interruption this all was to his life, to how he’d set things up to work, staying up late, night after night, spending hours and hours, tweaking things here and there to have it all work.
So when the phone rang, I’d press the answer button and, still holding the phone down away from my face, walk with a casual step out of his room, and then say hello. After my call, I’d walk back into the room and he’d be asleep. I’d sit quietly and just watch him. I sewed a bit. I was making a quilt, and I’d bring it into the hospital and sit and sew quietly. It gave me peace to do that. I could focus on the next stitch instead of the next blood test result. And he got those twice a day, for Marco, who created new cocktails to put into Moshe’s drip to make sure he was getting the best possible stuff delivered into his veins.
Moshe’s parents would come in to see him. They came every day. Didn’t miss a single one. They were amazing. Once, I made the mistake of thinking that if they were there with Moshe, I could spend a bit of time at home, taking care of the laundry, or other household things. Or even just take a breather. No. WRONG! One time, Hania called me on my mobile. “Helene? Yeah, hi. Moshe’s asking where you are. He wanted me to call you to tell you to come now.” OK, put down everything, get myself into the car, and on my way. I got to the hospital, and he was all out of sorts. He was frustrated with everything. He was frustrated with how his dad paced up and down, how his mother was agitated. Frustrated with his pillows on the bed, and with the position of the bed itself – all 4 separate parts that he could control to go up or down. I had to fill up his cup of crushed ice, get tissues so he could wipe his lip, make sure the controls were all in the right places, strategically positioned around him for easy access – his morphine button, the thing with the TV and nurse button controls, and the control for the bed position. And he mumbled something unintelligible, I said “yes, my darling”, he looked at me disapprovingly, I kept smiling, reassuring him, he said “Don’t do that, it’s patronizing”, I smiled and nodded, hopefully pulling it off so he didn’t get annoyed further, and he drifted off, and slept again.
So that was how life was, in those couple of weeks while his life hung by a thread. The kids would come visit, staying later in the evenings so I could go home. Occasionally, the couple of people Moshe was happy to see during that time would come visit, and he’d perk up a little. The nurses would come in and out, doing their thing. They were incredible, wonderful. And Moshe would put on his gorgeous smile when they’d come in, and he’d chat to them, wanting them to feel appreciated, greatly appreciated. My dad had always flirted with the nurses, but Moshe didn’t so much flirt with them as make friends with them, ask them about themselves, their nursing background, their lives, where they’re from. All that stuff that creates relationships.
Until one day, Marco announced that we were “away from the edge of the cliff”. And just like that, the emergency was abated. Not gone. No, definitely not gone, just abated.