Gotta admit I have a love-hate-love relationship with this machine. But today I totally LOVE it. Another “all clear” PET scan today. So fucking relieved, so very very happy. Still can’t believe it. Spent the afternoon celebrating, now off to spend the evening at a work event. There will be jamón! xx
courgetti with garlicky-bacony tomato sauce
Day three! Final day of PET scan prep and the no-carb-no-booze diet. And as you can see, I have been eating rather well. Wouldn’t want to eat like this forever, but I may start taking regular “carb & booze breaks” from now on. Or even just have the occasional no-carb-no-booze day. I actually had way more ideas for great non-carb things to make than I had time for.
I only realized yesterday that I also wasn’t supposed to be drinking caffeine (!!) but apparently that’s more important during that last 24-hour stage, which is today. I certainly won’t make a habit of drinking green tea for breakfast, and a couple of times I would have LOVED a glass of wine (especially when out and about) but it really hasn’t been a big deal.
chicken garam masala with lots of veggies
Anyhow, looking forward to having some toast tomorrow! The usual routine is that I get the scan done between 8 and 10 in the morning. Then I go for breakfast in the cafeteria while they check the images. Sometimes I have to go through the machine a second time, sometimes I don’t. After that, I’ll get my results. I’m so nervous! See you on the other side…
Well, it says just for 24 hours before an FDG PET, but I’m giving it three days. And frankly, after a full-on weekend in Antequera, I’d probably be doing this anyhow. So until Thursday morning I’ll be eating light, without wine, and BEING A NERVOUS WRECK. Scanxiety strikes again… fingers crossed!
I came across this the other day whilst thinking about scanxiety, and at first I thought, hey yeah, that’s cool. But then I thought, hey wait a minute.
I agree with the bit that talks about the things that cause our anxiety have already happened (so saying not to worry about things that will never happen obviously does not work here). And I agree with the part that says it’s about remembering. Because it did happen to me. Again and then again. So you know, why wouldn’t it happen yet again?
Which brings me to the part I disagree with “it’s not so much about worrying.” Sorry, for me it’s TOTALLY about worrying. And fretting, and second-guessing, and hoping, and regretting, and even panicking. Hey, it happened before, it can happen again. Why is that so hard to understand? And all those well meaning people who say “Don’t worry, you’ll be fine”… I kind of wish they wouldn’t say that. I know it’s not meant as such but it feels a bit like being given the brush off. That I am worrying about nothing. Really? If your cancer came back twice would you honestly and truly believe it would never come back again? That there is nothing to worry about? Think again.
So what’s the best thing to say to someone terrified about the possible outcome of yet another PET scan? Well, how about whatever is real for you? That you have no idea what I’m going through but you are hoping for the best. That you will get on the next plane if it all goes tits up. That you’ve been through this yourself and it’s totally shit and you’ll be waiting for me on the other side of the results. And even that you care a lot but simply don’t know what to say – that’s all totally okay and also totally understandable.
But please don’t tell me not to worry. Or that of course I will be okay. Though in fact, it turns out I am okay this time, at least for now. Yesterday’s PET scan was ALL CLEAR. And I’m still processing this. It will take a few days before I allow myself to feel all that happy relief. Or rather, I will dole it out bit by bit… once you have almost died you learn to savour things, so this happy joy of once again dodging a cancer bullet should keep me going until at least Christmas. After that, it will be life as usual again. Or at least as usual as it ever is for cancer survivors. Hey, thanks for listening. xx
Yesterday morning while I was working on the computer, answering some emails, flatmate Peter suddenly said to me, “now don’t get mad…”
Turns out while I was away in Jerez the hospital called the landline and told Peter that my PET scan was going to be on Tuesday morning at 8 am. And he forgot to tell me! Like, wtf? How the hell do you forget that sort of thing?? Anyhow, that meant the scan would be THE VERY NEXT DAY. Today.
So I spent most of yesterday fighting off scanxiety. Luckily I had a meeting in the morning with my lovely WLT chicas, and then a lunchtime tapas tour, to help keep my mind off things. Then in the evening I did just “whatever” until it was time to go to bed. I really couldn’t focus very well. Too many feelings.
By the time this post goes up I will already be at the hospital, pumped full of radioactive isotope and waiting to go into the machine. And I will be trying to remember how I felt when this photo was taken on Sunday morning. I was back from Jerez and enjoying coffee in bed with the cats, listening to the rain, feeling happy and calm. But I know I will actually be terrified. See you on the other side…
Today marked a very important milestone for me. I had my “5th anniversary” PET scan – which came back clear! – marking five cancer-free years (I finished my last chemo at the end of July 2009). I almost couldn’t believe it when Pilar texted me while I was out having coffee, saying that everything was okay. In fact, I burst into tears. This one is a game-changer. I won’t know exactly what they have in store for me now until I see the oncologist again next month, but today should be the last of the every-six-month PET scans (will switch to either once a year or possible every 10 months) and I will finally be able to get the chemo port out. That last one will be a relief and I won’t have to make my monthly visit to the hospital to get the thing cleaned out. So it’s all good. I mean, I’m not “out of the woods” yet. The 5-year mark is kind of random and my case is more baffling than anything. Most stage-IV people don’t stay in remission for this long. But hey, I’ve made it this far and at least for now I am fine, so it really does feel like a fresh start.
As always I want to thank my amazing Nuclear Medicine team – Pilar and Isabel (Ricardo retired last year) – and also all of you for being there with me through all of this. You can all take the next year off. 😉
A side note: October 28th is the saint day of Santo Judas Tadeo (Jude the Apostle) patron saint of lost causes. Coincidence?
… PET scan time! By the time many of you read this I’ll probably already be in the machine, since I have to be there early, around 7.45. The plan is to get home in time to do my lunchtime Sevilla Tapas Tour, which was booked long before I knew my scan date. Peter is on “standby” in case I get bad news as I rather doubt I’ll be in the mood to be sociable if that happens. As you can tell, scanxiety is much the same as always. Hoping for the best, terrified that I might hear the worst, wishing I’d eaten more broccoli, had drunk less wine, etc, etc.
But if all goes well this might be my last every-six-months scan, although I don’t “officially” hit the five-year mark until the end of July. If I do “graduate” to once-a-year scans then I think they may also remove the chemo port, which would be a relief. But I’m getting way ahead of myself. I just want to be okay. I know that I’ve been incredibly lucky so far. Please, please, please let my luck hold out some more. I really want to watch Morcilla grow up.
Fingers crossed everybody!
On Tuesday I started wondering why I hadn’t heard back about my next PET-CT scan so I sent a text to Isabel and that very afternoon I got a call telling me that I was scheduled for the scan on Thursday at 8 am. Which is TOMORROW. So well, fuck.
I was mostly okay about this yesterday but today I’ve kind of lost it. I checked again online to see what the proper PET scan prep is and have been sticking to it, even rescheduling tonight’s tapas tour for tomorrow so I could stay in and get an early night. But I’m such a nervous wreck.
I keep thinking about Pat and how, after four years of being cancer-free, she had a recurrence and not long after that she died. Just to say that I can never take it for granted that I’m going to be okay. And so I am, as always, hoping like mad that I will once again beat the odds tomorrow and be given another six months.
Had lunch with my friend Juan yesterday and told him how it would feel really extra cruel to get sick again after my life finally feels like it’s the one I’ve always dreamt of. I’m doing work I love, in the place that feels like my real home in the world, my social life is also fulfulling and I’m even starting to not be so hard on myself all the time. Also I have three young cats that I want to watch grow up. So please please please let me be okay tomorrow. Fingers crossed! xx
[UPDATE: ALL CLEAR! Another six months for me!🙂 ]
HUGE sigh of relief… my PET scan was clear today and so I get another six months. I do wonder if this is becoming “routine” for those reading and – like with some people I know – I get the “oh, don’t worry, you’re going to be fine!” thing beforehand and the “I knew you’d be okay!” afterwards. Which I know is a way of people saying that they are hoping for the best. But sometimes it feels like it is diminishing my own feelings about these tests.
I will be having PET scans every six months until next year and, if all is still well by that time, the scans will then be reduced to once a year. Why? Because I am still considered very high risk for recurrence. And why do I worry so much when I’ve had clean scans for the past four years? Because I’ve already lost a dear friend who was “cancer-free” for four years and another dear friend has been struggling through his latest recurrence for the past year or so. Trust me, these tests are very expensive. They don’t just do them as a matter of course – you have to be considered high risk.
Which is me.
Anyhow, I went off in the rain early this morning and was thrilled to see that the lovely Pilar was a part of my PET team today. She is such a lovely person and a long-time friend. You may recall that back when I was sick on chemo and desperate about how I was going to get through the summer she gave me a month. So it was great finding out that she was on duty today. After my first run through the PET machine I sat with her in the computer room watching my scan images spinning around… first time I’ve ever done that. Pili showed me how this bit was like this, another bit like that. Kind of cool and also a bit freaky. Then we went off for breakfast and after that I had to go through the machine again (this almost always happens because I have a dodgy area that needs rechecking) and then suddenly I was okay!
But you know, after all the build-up of stress and worry it actually takes awhile for the Good News to sink in. So Peter met up with me and we went for a celebratory glass of Botani at the Vineria San Telmo, and then it was a walk home in the rain…
Now I’m here all cosy and thankful and kind of floppy, to be honest. This whole ordeal really takes it outta me. So I think I’ll just take it easy this afternoon and evening. The Next Six Months can start mañana…
Apparently you are not supposed to eat carbohydrates 48 hours before a PET scan. Who knew? Well okay, I sorta knew as I used to read about some people’s pre-PET regimens on the Colon Club forum, but as nobody here had ever said anything other than I shouldn’t eat six hours before the scan I didn’t think it mattered that much.
Turns out that it is rather important as too much carb-sugar can skew the scan results, often ending up with false positives. Likewise doing any strenuous exercise 48 hours before a scan. I actually knew about the latter but can’t actually see the connection in the same way as the sugar connection – Sledpress, can you shed any light on this?
It also turned out that, coming home after two days of – let’s be honest – some rather intense tapearing in Málaga, I felt like I needed to detox a bit. So yesterday I eschewed carbs and went for nice light veggie and protein meals, which means that just by chance I am doing the 48-hour thing. But I wonder why I have never been told about this at the hospital here. Ah well, by this time mañana I will know if I am okay for another six months or if……