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
So while on holiday back in August I was on my usual number 15 London bus heading into town and had secured the front seat on the upper deck (yay!). Getting close to my stop the bus was stopped at a red light, so I thought this was a good time to make my way downstairs. Then, as soon as I was at the top of the stairs the bus took off again and down I went! My right hand automatically shot out to break my fall and smashed against the railing. In the end I only stumbled down a couple of stairs, but the damage was done. Hand immediately started hurting like a sumbitch.
Next day I met my friend Thane for lunch. She took one look at my hand and told me to take my ring off immediately before the swelling got so bad I’d have to get it sawed off. Which turned out to be very good advice. And well, since then, it really hasn’t been getting any better. So I finally went to have it x-rayed and it seems like nothing is broken. But the space between my pinky and ring finger is still very tender and swollen (almost two months later), which can’t be right. Someone suggested I get an MRI done, since x-rays don’t often show the whole picture. My doctor says I should keep icing it and STOP USING IT (or at least as much as possible). Really not sure what to do at this point.
THIS is what I ended up drinking instead of Tío Pepe en Rama today! But I’m getting ahead of myself. What happened was that after a lazy Sunday I settled down with Morcilla to watch some Netflix and have a late lunch (roasted cauliflower and parmesan noodles) and about an hour later I started feeling sharp pains in my upper abdomen. It got so bad that I had to go lie down, and after awhile the vomiting started. This lasted all night and by morning I was in so much pain I could barely stand up. Yep, it was time to go to Emergency.
When I got there I had my belly prodded and was immediately x-rayed, had blood taken, and was given an intravenous blast of painkiller (phew!). And about an hour or so later I was told the dreaded news that I would be staying in for Observation. They suspected an obstruction and, given my history, didn’t want to take any chances. I had been hoping it was my hernia acting up, but the doctor said the hernia wasn’t “presenting as a problem”. She said it was more likely the adhesions, but that they wanted to rule out, you know, CANCER. So I was wheeled over to Observation, where I put on my gown and got into bed. Luckily by this time the vomiting had stopped otherwise I would have had to have the super-dreaded NASOGASTRIC tube stuck down me in order to ingest the liquid you see above (a contrast agent for the second x-ray, for comparison with the first). Imagine licorice-flavoured snot…
Long story short, the second x-ray didn’t show anything alarming and by this time I had had a BM (more proof there wasn’t a serious obstruction anywhere) and was told that if I was fine (no vomiting) after having a snack, then I could go home. I also got to see the surgeon who had performed all my ops. But I was already counting the minutes – being in the Observation is not an experience I would wish on anybody – so when they suggested I also stay for dinner just to be sure I PROMISED I would come back immediately if there was the slightest return of the previous symptoms. And so they let me go.
What a Monday. I was supposed to have gone to the presentation of this year’s Tío Pepe en Rama, which has become something of a tradition. But to be honest, I was just so relieved that nothing was seriously wrong, and so happy to be back home with the cats, that missing the event didn’t seem so important. I’m supposed to stick to a bland diet for awhile as they are still not sure what caused the temporary obstruction. But as you can see below, adhesions are quite nasty things to have, and can cause all kinds of painful (and sometimes deadly) mayhem. Since I have had four major abdominal surgeries you can imagine the mess that’s going on in there. There is a chance of having some of the adhesions removed, but as this would involve another surgery, it will probably end up with more adhesions later on anyhow. Will have to seek some medical advice about this.
Today I had to go see my new oncologist. Which wasn’t nerve-wracking as I had already got the ALL CLEAR good news results just after my most recent PET scan a couple of weeks ago. Some of you may recall that a few years ago my then oncologist totally misread my results and told me I only had a year to live. The asshat hadn’t even seen the biopsy report, she just handed out a death sentence. After that I started seeing the sub-director of Oncology, and that was great. I could talk to her, she got things done, and all tests went smoothly. Until she got cancer!
And so last year I was told that after this year’s PET scan I would be transferred back to my original oncology group. Well, okay. Except I walked into the office this afternoon and I swear there were two 14-year-olds sitting there. And their idea was that I should have a CT scan in 6 months and, if that went well, I would continue with annual CT scans. WTF? I told them that last year (after reaching the five year cancer free point) I’d been told I would be having PET-CT scans anually, and they said “BY WHO?”… honestly, they couldn’t have been more unprofessional (caught one of them giggling at me as I was getting up to leave). Anyhow, we have left it that they would get in touch with Nuclear Medicine and sort out the next step of my future scans. Meanwhile, I’d rather be getting the PET-CT scans, wouldn’t you?
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.
Anyone who has followed the whole cancer thing knows that I have very hard-to-find veins. They are not only very fine, but I’m told they have a tendency to roll (!) when found, and of course being FAT doesn’t help. Most of the time nurses take one look at my inner arms and go straight for the hands. Which 1) hurt like hell and 2) also have very few vein options left as most of the surface ones were destroyed by chemo. So going for a simple blood test isn’t so simple. Also, unlike most of you guys, I end up having to have blood drawn several times a year.
This morning I had to go for another blood test even though my last one was in October, because I’m seeing the oncologist next week to decide on future monitoring (will it be PET scans once a year now instead of every six months?). I came out of the October session completely battered and bruised after several failed attempts. And – sorry guys! – it is almost always male nurses who can never seem to find a vein (with the exception of One-Poke Manolo). So my heart lifted when I saw two women doing the job today and, sure enough, after having a feel around my right arm, then trying my left, the nurse found a vein not visible to the naked eye and was in and out in no time. I don’t even have a bruise – which is as it should be. Last time both my hands were bruised, swollen and painful for days.
Small mercies. I’ll take em!