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
Not exactly a song this Sunday, though we do have music in this video thanks to my fabulous friend Juan Tarquini (who put the whole thing together for me). Four years ago today my dear friend Pat Steer died. I met her on a cancer forum back in 2008 after we’d both been diagnosed with stage 4 variations of colon/rectal/liver, etc. And she became not just a friend but my sister and my hero, the no-nonsense voice of reason, the one I knew would never bullshit me, the one who loved me too.
Just before Pat died she expressed sadness in her final blog post about (amongst other things) not having ever been able to come on one of my tapas tours, so I obliged by going all around town to some of my favourite places and (badly) filming a typical tapeo with her included.
Juan did his best with the mess of clips I left with him, and Pat said it took her at least four times to get through it, because she kept breaking down in tears. But finally she watched it all and loved it. And I still love her and always will. Four years ago today I lost her, and I still miss her so very much. Strong thoughts, my darling. xx
Continuing with the “tradition of hope” that began back on January 3rd 2009 when I posted my first ever Photohunt entry. The theme that week was “hope” and I put up a photo of my daybook turned to January 3rd 2010 with the words “STILL HERE!” written on it. I had finished a second stint on chemo just a few months previously and hoping felt like a very bold thing to do. Since then I have posted a similar photo on this date and – as ever – I hope with all my heart that I’ll be here to turn the page and see this next year.
Since I joined the “5 Year Club” marking five cancer-free years I am now down to one PET scan a year (instead of every 6 months) but I still feel just as tentative writing this as I always have. So I hope to see you back here for Hope 2018.
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…
The prep-room at the hospital. My appointment was at 3.00 today and l arrived right on time, expecting to wait at least an hour before my name was called. Five minutes later l was undressing in the prep-room and waiting for the nurse to stick a shunt in my hand (just in case). Turns out all the prep (blood test, no eating, NO WATER for 8 hours) was just in case that happily wasn’t necessary. There was some serious stabby pain when the local anaesthetic was jabbed into my chest, but other than that it was a breeze. The whole procedure took about seven minutes.
My only regret was that I didn’t get a photo of my ex-port lying in the pan. After all, we’d lived together for almost six years. In fact, I asked after I’d got dressed again and the nurse said “oooh, you should have asked straight away, we’ve thrown it into the bin now”. Apparently they didn’t think this was a weird request. In fact, I’d had a couple of other questions for them, prefacing with “I hope you don’t mind…” and they were lovely. The surgeon said there were no silly questions and that it was important that I felt at ease. ALL women on this team today. Not to say that men can’t be understanding, but when you’re yanking something out from between someone’s breasts I’m guessing there’s just a bit more empathy there with women.
First thing I did after I got out of there was drink two huge glasses of water. And this evening I’m just chillin’ at home with the cats and feeling so glad to have this over and done with. Until October. Turns out I only get a 6 month hospital break this time after all (the 6-month PET would’ve been in March) but if all goes well in October then I will get an entire year off from hospital visits. Wow. Seriously wow.
I got the call today!
On Thursday afternoon they’re taking out the chemo port. And, like, wow… I don’t even know how to feel about that. I mean, it’s good timing as I would have had to go and get the damn thing flushed out this week anyhow. Though as it is I’ll have to make an extra hospital trip tomorrow to get blood work done so they can check coagulation. I remember when I had it put in, not thinking twice about it because the idea of having any more chemo pumped through my poor hand veins was more than I could bear. So even when the chemo port “post-op” proved a bit more painful than I’d expected, well, it was nothing compared to the alternative.
Of course now I’m all nervous. And almost afraid to give it up, you know, just in case. It’s like I’m tempting fate or something, like it’s too hard to really believe that IT won’t come back. Anyhow, my appointment is for 3 pm on Thursday. Can’t eat after 7 am, which won’t be a problem. But they told me I can’t even drink water. I don’t remember that from last time. No water?? I need to find someone to come with me as I’ll be sedated and have a local anaesthetic so may be woozy afterwards. And then I’ll go home. And I won’t have a chemo port in my chest anymore. Huh?
Today I had to see my oncologist. My previous oncology appointment was on November 24th. At the time I already knew my PET scan had come back clean, but had to visit the onc to figure out what to do next, having reached the all-important 5-year cancer-free anniversary. Turned out I had to have another colonoscopy done first, which also came back with the ALL CLEAR. So I wasn’t too worried going to see the oncologist today. And in fact, it was one of the least stressful hospital visits ever. There was some discussion as to whether I’d continue to get PET scans, or “downgrade” to CT scans… and so far it looks like I’ll continue with PET scans. But just once a year now, rather than every six months. So I will probably have the next PET scan early October and then see the oncologist again on the 15th (the appointment is already fixed). And… well, it feels AMAZING that I won’t be going through scanxiety again in March or April. I don’t think I’ll ever feel “out of the woods”, but this is a very welcome break.
Now I’m just waiting to have the chemo port taken out. Gawd knows I’ve been living with that long enough, along with the monthly trips to the hospital to get it cleaned out. So today I also popped over to the Pain Clinic to see where I was in line. I knew back in November that it would be a bit of a wait as those needing ports have priority over those wanting them out, and rightly so. But it looks like there are only half a dozen people ahead of me now, so it should happen within the next month or so.