It was question and answer time at the hospital yesterday. And I have to say that I was very impressed by how honestly my oncologist Yolanda answered my very direct questions.
The day got off to a bit of a frantic start. Not only was Nog packing up to leave for his month-long job teaching English at a residential camp for kids in Alicante, but Pipocas found out she might have to leave the hospital earlier than planned and, if I was going to start chemo, this would mean that I’d be left on my own. And so on the way to meet Pipocas I stopped by the girls’ apartment – woke them up! – and asked daisyfae if she was still okay about coming to the hospital just in case, as she had previously offered. She was, and so off we went.
And three hours later my whole life changed.
It kinda went like this. I thought I had a choice about either operating now or later, but it turned out that the very specialist surgical team that does the liver op stuff is way booked up (also it’s summer holidays) and so my only option now is to start chemo for a cycle or two (3-6 weeks) and then have surgery. The chemo will start on Monday.
Further questioning led to me asking about my REAL medical condition and prognosis. And I mean, a LOT of extra questioning. Yolanda wasn’t giving anything away but what finally came out was this. . .
- that I’d had a very aggressive tumour that metastasized very quickly to my liver
- that after liver surgery there will be a 50% chance of the cancer returning
- that with chemotherapy this will be reduced to 45%
- that once I finish chemo I will need to be tested every three months
Pretty scary stuff. Yet somehow I feel more ‘at home’ knowing where I stand. This is much better than going through the chemo and liver surgery and THEN being told the odds. Which aren’t particularly in my favour, are they? I was surprised at how little difference having chemo made.
Don’t get me wrong. I don’t feel like giving up and dying. But I also don’t think that I can “fight cancer” by doing anything more than following the prescribed treatment and continuing to enjoy my life. It’s a very serious illness. I’ll either get better or I won’t. Dammit.
casa azahar 
In the immortal words of the G.I. Joe cartoons: “Now you know. And knowing is half the battle.”
I agree with you — I sure as hell would rather know exactly what’s going on.
((hug))
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Shit… but why are they playing coy with you? they should be spilling every detail with you despite asking.
Yeah, yeah… i know… choir? meet preacher. preacher? meet choir…
Strengthening and healing **hugs**, az…
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It isn’t playing coy as such, gnu kid. I told Yolanda that I wanted to always know the the truth and she said that it was her professional obligation to answer my questions truthfully. But that’s the trick – that she is only obligated to answer my questions.
I mean, how can I ask questions about things I don’t know anything about?
It really helped this time to have a brainstorming session with Pipocas and daisy while we were in the waiting room and get the questions sorted out. And Yolanda gave me a link to the National Cancer Institute website, which she said I might find helpful.
“I sure as hell would rather know exactly what’s going on.”
Surprisingly, some people don’t want to know, Lori. According to Yolanda. Or they say they do and then get upset when they find out ‘too much’. Because, let’s face it, once you are told something that’s it, you can’t ‘un-know’ it. I can understand that it’s a delicate balance for her to maintain with her patients.
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Never mind all that, you realize that this means no booze for ages, right?
Seriously, at least now you know where you stand, and from experience I think that does help.
If I might make a small suggestion? Go out and find a copy of Lance Armstrong’s ‘It’s Not About the Bike’. Although he does come across as a bit of an arrogant SoB (not one of the six people I’d invite to a fantasy dinner party), it is a remarkable story and a lot of people have gained from reading it.
Oh, and baton down the hatches for tomorrow night. I think it might get a bit noisy…
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No booze??!!! Are you sure? Samantha on Sex and the City kept on drinking cosmopolitans when she was going through chemo. And I mean, that programme is so true to life!
Hmmm… so it looks like I’ve just got two days to drink the 18-year-old Glenfiddich that daisy brought with her, as well as sample her vodka jello shots.
Actually, I’m wanting to make the most of these last two chemo-free days. After Monday it’s going to be chemo – surgery – chemo until at least December. Bleh.
“I think it might get a bit noisy…”
Oh gawd, I hope Spain loses… 😛
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Oh, you can drink during chemo. You will have to be careful (from my observations) and your tastes will change, so you may end up drinking some stuff you never thought about before. Our experience of chemo was that S had a few days were she felt like death and about a week where she didn’t want to do anything, but she was doing two weeks out of three at work throughout her chemo.
But if they’re going to operate on your liver, well, I don’t think they’ll be giving you champagne afterwards.
And trust me, December will roll round way quicker than you think.
I don’t think Spain are going to lose, you know.
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Hmm 😦
Not the best news you could hope for, but I’m in the “at least you know” club.
It is true that some people don’t. My father- in-law had prostate cancer, that it was inoperable, and that after the first year or so palliative treatment was all that was appropriate. He was adamant until the end, that he just wanted to have the treatment and get on with his life.
It was only a few days before he died that the various nurses insisted on having a conversation with my mother-in-law to tell her haw far gone things were (though that was obvious to anyone on the outside).
I’m not a great believer in “fighting” the disease – does that mean that everyone who has a short prognosis didn’t fight?
However, the mind is capable of affecting the body very directly, draw strength where you can, be positive, get on with life knowing that you are important to many others as well as yourself, and you may yet surprise them all!
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I believe Spain won – – – A good excuse for some “hair of the dog” 🙂
{hugs}
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Johnny, there’s been quite a bit in the UK media recently about whether or not “fighting” affects outcome. It doesn’t seem to. I can only find this link at present – but I’m sure there must be lots more floating around t’interweb.
http://www.timesonline.co.uk/tol/news/uk/health/article2710130.ece
It’s hard to know what to say in response to your post, az – except … You are effing amazing!
Most people I know, self included, couldn’t have managed such eloquence in the face of what you were told at that appointment.
:big hugs:
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Good article, T. I’m thinking about doing a post on this tomorrow. I tend to agree with Johnny that if you think that so-called positive thinking can help with “fighting” a disease in a practical way then there is an unfair responsibility put on people who end up dying. Like, they just didn’t “fight” hard enough? That kind of shit really pisses me off.
As for being eloquent in the face of what Yolanda told me … to be honest, it’s barely sunk in yet. I know that. Wait till I start feeling sick from chemo and then have to go through another major operation.
For the moment I have these two chemo-free days left. I was hoping to do something fun with the girls to help distract me, even just go out for lunch, but they seem to gone off on their own today (neither have mobile phones so it’s up to them to get in touch with me).
And so I’m just hanging out at home, feeling kinda lonely and missing Nog – and not just because the dishes have stopped washing themselves . . .
Ah well, better get used to this. The feeling alone thing. It seems like most people either walk on eggshells or act afraid if you get a little emotionally weird. Because of course it’s all about them and not about the person who just found out her illness might actually be terminal.
*waves to Sara* Does this sound familar, honey?
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Az, I am so glad that daisyfae and nursemyra are there with you now. Surely, their presence must be a great help in shoring up your spiritual strength. My love and best wishes to the three of you from the bottom of my heart.
Sorry I’ve been absent from the internet lately and have thus missed out on developments in the lives of my friends, but you, df and nm have often been in my thoughts. I’ll try to check in on you every day, even if only to just say “hi”, as I know well how devastating it is to feel alone and isolated in times of crisis.
Much love and a big hug to you, Az.
xoxo
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Honesty from medical professionals is always slightly guarded, and slightly double-edged (do I really want to know? syndrome), but I’m glad you have the facts.
I don’t know whether fighting helps, but I reckon that continuing to live life as fully as possible, as is your plan, cannot hurt. Even if it doesn’t make a difference long term, it would make a difference to your feelings on a day to day basis and that is a good thing. A very good thing, I’d say.
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It is a thought that many of us may have asked of ourselves? Would we want the whole truth or be blissfully to be ignorant of it?
I am one for wanting to know all that is… that way you have the choice to deal with it as you so wish (make plans, do what you want to do etc). I guess that is similar to you as you have asked the ‘gritty’ questions….
I am so rooting for you, your strength and resolve .. and sending huge 70s hugz
🙂
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And another bit of wisdom from, of all places, “Indiana Jones and the Last Crusade”
“Kid, you lost today. But you don’t have to like it.”
Fight. We’re all with you.
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Okay, you know exactly what you’re up against and what you have to do to give yourself the best possible chance of getting through it. I think I’d want to know all the details, too, (I like as much control as I can get, and there’s no control without knowledge) but I can understand why the oncologist was wary of telling you “too much” all in one go – as you say, once you’ve been told, you can’t be un-told and I guess most people would have handled the news with much less courage and dignity.
You have one of the biggest international cheer-teams of any patient on the planet, so that must count for something 🙂
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Hi Az, I just want to chime in and wish you the best over the coming weeks and months. I’ve been reading your posts over the past few days and I’ve tried a few times to say something that might make some sense.. Your situation has been featuring large in my thoughts.
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az, I’m glad you got a doctor willing to tell you the whole shebang. It gives you something to plan with, and spares you a least a tiny bit of the energy you were spending on being scared. You’re still scared, but not of what you don’t know.
Have I mentioned lately how much I admire you, lady?
Oh, one last thing — about those odds? My Michael got a cancer at 15 which kills 97+% of the kids who got it — and he outlived it by 26 years. Take that with a grain of salt, but know that the odds are written on scratch paper, not stone. ((hugs))
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I am such a coward, S.
You know I love you and am thinking about you all the time.
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