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Tag Archives: cancer

on friendship and hope…

18 Friday Feb 2011

Posted by azahar in cancer, friends, health & happiness, hope

≈ 9 Comments

Tags

cancer, friends, hope, life


Last July I wrote this very happy post about two very dear friends I met on the Colon Club forum, Pat & Jed, because Jed had just got the all-clear on his latest PET scan (as had I) and Pat was continuing to do well living in NEDville (NED = no evidence of disease). The three of us have had many parallel experiences, though both Pat and Jed have undergone much longer and harder chemo stints than me, and have also had more difficult operations. Frankly, as my doctors have said they see no possibility of curing me, I reckon I’m just being given “chemo as required” as long as the tumours stay away.

After my last PET scan in January I got in touch with Jed (Pat and I see each other on twitter) to see how he was faring. And he told me the bad news… a recurrence in both lungs and lymph nodes. Prognosis: inoperable and on “chemo for life”, however long that turns out to be. My initial reaction was to go completely into denial – this couldn’t be happening to my Wonder Twin! And as I was in the throws of packing and moving house I wrote a quick email that was all bluster and bravado (sorry Jed) saying I’d be back soon. And every day since then I’ve wondered what I could say, how I could help, and kept saying to myself “I’ll write tomorrow!”

Then last night I got a quick message from Pat. Her cancer was back. Sounding almost exactly like Jed’s – lungs, lymph nodes and possibly bone mets – and I fell apart. I could no longer do the denial thing and cried for a solid hour, just like I’m crying now. I sent them both messages asking how I could help, meanwhile I couldn’t remember ever feeling so helpless in my life. But I really really want to be able to do something.

It’s just that, you know, this is all so damned unfair!! Pat and Jed have done everything right, they got on healthy diets, and did everything they could to help their luck along. Meanwhile I’ve not changed things all that much diet-wise, continue to drink too much wine and am still very overweight. WTF? No, I’m not saying that I deserve to get a recurrence and they don’t (though to be honest, I’m always waiting for the other shoe to drop) … it’s more that none of it makes sense. And I am left angry and hurt and scared … and then ashamed that I end up thinking about me. But  it’s not only about me, because I think I know how Pat and Jed are feeling right now. None of us are into false hope and patent “positive thinking” crap. And so when Jed tells me “I know you well enough to know that you will not think I’m morbid or ‘giving up’ or any such nonsense”, well, he’s right. But then when he says “now you’ve GOT to hold the line! Twin powers always activated” I burst into tears and want rail against the goddamn stupid bad luck that brought us all to this place. Even though it’s the same goddamn luck that brought us all together. It does give one pause.

Guys, you’re probably reading this. Thanks for the email today Jed, and I hope you can send me some more info about how you’re doing soon Pat. I’m sorry for getting so emotional, because I know that doesn’t help. But I love you both so much and, just like it says up there, your existence gives me hope. And it always will.

fingers crossed!

21 Friday Jan 2011

Posted by azahar in cancer, chemo, hope, hospitals

≈ 37 Comments

Tags

cancer, pet scan

Today at 8am I’m having the third PET scan since I got the all-clear in September 2009 after my last chemo finished that summer. Will my luck hold? Will I be okay?

I’m always nervous, if not downright terrified, just before a scan (scanxiety!) but this time was only given two day’s notice, so at least that cut down on the usual anxiety build-up period. Just two nights of lost sleep rather than a week or so. But the really extra anxiety-making thing is that this time I have to go all on my own. Nog has a class and I couldn’t find anyone else to come with me. We’re talking about six hours of scary hospital time with nobody else to talk to.

By the time most of you read this I’ll probably be either in the machine or still at the hospital awaiting the results. I’m really lucky that I don’t have to wait a month after the test for results as my nuclear medicine Team always tell me straight away. The scary thing about that is – if they do find more cancer – they will probably insist I start chemo next week, which would really bugger up my moving plans, as well as the two tapas tours I have booked the first week in February. Of course the even scarier thing would be them telling me that chemo is no longer an option…

Hope I’m back with good news later on!
I know you’re all rooting for me, and that helps.

more hope

03 Monday Jan 2011

Posted by azahar in cancer, home, hope, life stuff

≈ 14 Comments

Tags

2011, cancer, hope, postaday2011

On January 3rd 2009 I put up my first ever Photohunt entry – that week’s theme was “Hope”. It was a photo of my old suede daybook showing January 3rd 2010 with the words STILL HERE written on the page, because in 2008 I’d been  diagnosed with Stage IV colon cancer, had gone through three major operations and one nasty bout of chemo and had also been told my chances of survival weren’t very good. The next year I did the same thing for the following January 3rd after having had a recurrence and more chemo, and I tell ya, it was wonderful this morning to see those words again and still actually be here. With another PET scan coming up this month I’m starting to get very nervous once again.

And so here is today’s STILL HERE pic written on the page for January 3rd 2012 (taken in bed with iPhone, hence a bit fuzzy). I really really hope to see you then!

pokies are no jokies

04 Thursday Nov 2010

Posted by azahar in cancer, hospitals

≈ 17 Comments

Tags

cancer, chemo port, emla

As most of you probably know, ever since I got the chemo port put in and then stopped treatment (end of July 2009) I’ve had to go to the hospital once a month to get my chemo port flushed out… otherwise it could get blocked and, well, kill me. And since I am still considered high risk for recurrence I’ll probably have the port in for the next few years. But even though it’s a bit of a nuisance to go and get this done every month, at least that’s all it is now. At first, after my last chemo, every trip to the hospital was fraught with fear and anxiety and I always needed a “hospital buddy” to come with me. But then one day there wasn’t anybody and I needed to get the port flushed out, so I bravely got into a taxi and went by myself (twittering like mad all the way – and bless everyone who tweeted back at me). But I did it, got there and back again without falling apart. So from then on it got easier for me to go on my own for the chemo port thing (though going in a taxi is still necessary to avoid panic attacks).

The actual cleaning itself isn’t too bad, and I’ve learned that if I get there after 7pm I’m pretty much in and out in about 20 minutes. Sure, it’s still hard to walk into the chemo room and hear the beeping machines and see all the people getting their infusions – my heart really goes out to the ones who don’t have chemo ports and are getting it in the hand or the arm (ouch!). But in general I’m okay about going to do this on my own now, though it’s a bit hit and miss with the nurses. Some are quick and efficient, others seem more than a bit clueless (they scare me!) and others look visibly annoyed when I ask them to remove the air bubbles before sending a whack of saline back into my vein.

About three months ago I had a male nurse do the procedure and when I saw him painstakingly lay out all the stuff needed I thought – “uh oh, a newb!” – and wondered if he knew what he was doing, especially when he seemed to be missing one syringe full of saline. So after he finished I asked why he used one syringe less, which got him flustered so he went off to check, then came back and said I was right, was all apologetic, and said he’d do it again. Well – ouch. But better to have it done right… right?

Then last Tuesday evening I decided to go get the port flushing over with (had originally planned to do it today), got in a taxi and was actually pleasantly surprised to see the same male nurse. And he remembered me, and told me how he’d just taken a booster course in port cleaning and that I had nothing to worry about. Ah, he made me smile as I watched him carefully lay everything out in his meticulous way. He also made me laugh when he said he hoped there wasn’t any sad reason I was dressed all in black – I wiggled my red earrings and toes at him and said I had happy accent colours. And when I said “hey, watch it with the bubbles”, he very seriously explained how he never uses the last bit in the syringe as that’s where the air is trapped. And so I decided I loved this guy and always wanted him to be there when I went to get my port flushed out, this guy called … Wenceslao?? No shit, I glanced at his name tag and that’s what it said. So I said… “You’re name is… Wenceslao???” And he was all “Well, I don’t see what’s weird about that, you guys have that song about that king…” and I fell in love with him even more. My huge bald bear of a young male nurse wearing bright yellow crocs and called Wenceslao, who takes such excellent care to do the port flushing just so.

After it was done he asked if I was in a hurry because he wanted to show me something on the computer that he’d learned about in the last course, in case I wanted to try it for next time … and it was this Emla cream. It’s a topical anaesthetic and Wenceslao told me if I got some I could put it one hour before coming and then it wouldn’t hurt when I got, um, poked. Because that’s what the image on the computer screen said (same one as here)… pokies are no jokies. And then he leaned over and muttered under his breath… “what’s a pokie?” So I poked him in the arm with my index finger and said I’d ask my GP (Agustín) about it. But another nurse had been watching us and said there was tons of Emla in the nurse’s station, so Welceslao got me a tube and some bandages (“you don’t want to stain your blouse”) and got me all set up for the next time. I didn’t have the heart to tell him the pokies didn’t actually bother me much. It was too sweet of him to go through all that trouble, so I will indeed use the cream next time and hope I catch his shift. I should have asked for his mobile number so I could call ahead and check. Next time…

sometimes…

21 Thursday Oct 2010

Posted by azahar in cancer, death & dying, health & happiness, hope, life stuff

≈ 20 Comments

Tags

cancer, life stuff

…entire days go by without me thinking about having a terminal illness.

Yesterday wasn’t one of them.

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