Category Archives: cancer

to have and have not

09 Wednesday May 2018

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This has been a strange week for me. Exactly ten years ago I went to the Feria de Jerez and spent a fun day there with friends. And on the way back to get the train I saw this graffiti (Tengo Cancer – I Have Cancer) on the wall beside a bar next to the station, and something about it moved me to take a photo. There was something poignant yet hopeful yet… I dunno… about it. Whatever. I took the photo.

The very next day I doubled over in extreme pain and thus began two of the most profound years of my life. Not going to go over the whole ordeal again here – if you’re interested you can check out this link. Suffice it to say I somehow survived stage 4 colon cancer with metastasis to the liver and peritoneum, including 3 major abdominal surgeries and being on chemo twice (first 2 months, then 5 months). The chemo was diabolical, but apparently got rid of all the nasty cancer. At what cost to the rest of my body cells? Frankly, I don’t give a damn. I just don’t ever want to go back on chemo again. It was then that I (badly) photoshopped the graffiti photo thusly…

Fast forward to January 2018 and another routine PET scan. Except instead of being given the usual – everything looks fine, see you next year! – I was told there was concern about an area of inflammation that had grown significantly since the previous PET scan. This led to me having several tests done, including a colonoscopy, endoscopy and a CT scan. With a second CT coming up in June, so they can check the progress (or decline) of the “area of concern”. Worried? Well, hell yeah! Because that’s basically all I ever do. Not just about health issues. I worry about EVERYTHING. All. The. Time. It’s exhausting, but I can’t seem to help it.

Anyhoodle… getting back to my initial story. This week marks the 10th anniversary of the beginning of the whole cancer thing, which in my mind is always connected with the Feria de Jerez. And so today I had to go. Nothing morbid or weird, it was more like touching base. Because back then was when all that started, and ten years later I am still here and able to go back and enjoy my favourite feria in Spain. So I did. And it was lovely (nice feria pics coming soon – promise!).

Except this year I am not sure if I “have or have not”… tengo o no tengo. Still waiting to find out. And these days this is what is left of that poignant graffiti. Looks a bit ghostly. Like they tried to paint over it but couldn’t quite get rid of it. I’ve often wondered who this person was, and whether they got better. I sincerely hope so. Just like I hope I will continue to be okay too. So… bit of an emotional day.

 

empathy cards

28 Wednesday Mar 2018

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Thanks to Kate @sledpress for sending this my way. What an excellent idea. Empathy cards for serious illnesses – or what to say when you don’t know what to say – by Emily McDowell. Though of course I hope none of you will ever have to send me one, they are quite clever and right on the money. Reminded me of that list I posted here a few years ago… stupid things people say.

no news is… well, no news

19 Monday Mar 2018

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Back from seeing the oncologist and basically there’s no news. Things are as I suspected, with both the colonoscopy and endoscopy results clean. But there remains that pesky – and mysterious – inflammation that nobody can explain, short of opening me up, which my doctor seems to think is a bit drastic at this point. She wants to continue with clinical studies for the moment and monitor my “well being”. And so the next CT scan will be in May and I’m to check in with her again mid-April just to report on how I’m feeling.

All of this is both comforting and yet still somewhat alarming, because if they were sure I was okay then they wouldn’t be doing another CT so soon. So there must be something about the inflammation they find worrying. I forgot to ask about possible peritoneum issues, which I’d had before, and which usually don’t show up on scans. But I was there on my own today and, as usual, I got nervous and forgot what I’d wanted to say. I had also wanted to ask about the “opening me up” options, but then got  caught up in the good news side of things. Basically I should never go alone to these appointments. I’d be more worried about this now if I wasn’t seeing the oncologist again in April. Next time I’ll take notes.

Anyhow, afterwards I made my way home, stopping at Casa Morales for a quick “brunch” (tortilla and a beer), because I had been too nervous to eat breakfast before going to the hospital. And it was nice to just chat with the guys there and feel normal, even though “life in limbo” continues.

my first endoscope

01 Thursday Mar 2018

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The endoscope examination is pretty much like the one at the other end, except without the horrendous massive “clean out” prep. For this one all I had to do was not eat or drink for 8 hours before the test. I actually had my last meal more than 12 hours before, but going 8 hours without any water (!!!) was really hard. I’m a 2-litre a day water drinking fiend.

Just like with the colonoscopy I was sedated before the procedure but this time I wasn’t so lucky with my nurse, who could NOT seem to find a vein anywhere. And hand pokes are way more hurty than arm pokes, but anyhow. I was eventually chemically relaxed enough and they did their stuff. It was uncomfortable more than painful, and I got a bit gaggy towards the end, but nothing too awful. And then I was wheeled into the recovery area.

And the best thing of all was that they told me they hadn’t found anything, that I was “all clear”! I have to say that I love this about the Digestivo department, giving patients their results straight away so they don’t have to wonder and worry until they see their doctors again (my next onc appt is March 19th). Though I suspect they only hand out the good news results. But hey, I am happy.

From what I understand, this now means that they have ruled out two of the main possibilities for recurrence – for now. Next up will be another CAT scan three months from now to compare those results to the last one. The main issue being ALL THAT INFLAMMATION that nobody can explain. And so… good, right? At least until I hear otherwise. And so, back to living in denial.  😉

still in limbo…

26 Monday Feb 2018

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I’ll write something more about my fab weekend away later. As usual, it was great to come home and be welcomed by los gatos (this big lug was especially happy to have his comfy warm human lap back). Though I didn’t sleep so well because today I had my oncology appointment to get the results for the colonoscopy and CAT scan. Bottom line is that I am still in limbo for now.

The colonoscopy results were good, which I already knew because at the time I asked them if they had taken samples to be tested, and they said no because they hadn’t found anything. Phew!

But I had to wait until today for the CAT scan results. In a word, they were inconclusive. There is still that pesky area of inflammation sitting over my stomach that is obscuring any clear scan results, either the PET or CAT. The reason I am getting all these extra tests now is because the last PET scan results showed that the inflammation had grown substantially since the previous one, and I was also in a lot of pain. Though shortly after the last PET the pain suddenly disappeared.

And so, because they don’t actually know what is going on in that murky area of inflammation, I now have to have an endoscopy so they can look inside my stomach. That will happen on Thursday. AND THEN… I have to go through the hell of waiting for results until my next oncology appointment on March 19th.

I like my new oncologist. She is very clear and sympathetic, and answers all my questions. Today she said that because of this “murky area” they simply cannot say with certainty that I am in the clear. And so even if the endoscopy comes back clean, they will still want to do a follow-up CAT scan in three months. She said the only way to be 100% sure that I have no cancer is to operate, which she thinks is too aggressive an approach at this time, especially as the pain has disappeared.

After having undergone four major abdominal operations, the main suspect at the moment is post-op adhesions, when the buildup of fibrous bands of scar tissue wreaks havoc on the surrounding organs. This very same buildup often shows up as inflammation on scans, and can obscure scan results.

So here I am once again in limbo. Of course I am relieved that I wasn’t told today that they’d found cancer and then passed on a death sentence… but I am not out of the woods yet. Because although my doctor told me today it was a positive sign the pain had gone, they wouldn’t be doing these extra tests fer nuthin. So today felt like a “stay of execution”, and now I am waiting (with fingers crossed) for a full pardon. xx

après oncology

01 Thursday Feb 2018

Posted by in cancer, friends, hope, hospitals, sevilla, sherry

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This morning I had an appointment with my new oncologist. After last week’s “good news bad news” situation following the PET scan I have to say I’ve been pretty stressed, with some days better than others. Say what you will, but after all my cancer history, the idea of a looming recurrence threat just became a lot more real to me. I try hard not to think about this too much, but sometimes it’s just too much.

Anyhow, today my lovely friend and colleague Cinta came with me to my appointment to act as “interpreter”, because when I get really nervous somehow my knowledge of Spanish totally flies out the window, and I wanted to be sure I didn’t miss anything important.

The good news is that both Cinta and I like the new oncologist. She was patient and had a gentle touch whilst poking around my belly. She was also patient as I tried to explain my situation in a more elaborate manner than she possibly required. Then she said that she was going to ask for both a colonoscopy and abdomen-thorax CAT scan, in order to find out what was causing the increase of inflammation seen in the PET scan, and also the extreme abdominal pain I’ve been having since November.

EXCEPT the weirdest thing has happened. After having had “travelling” abdominal pain for almost three months, sometimes so intense I couldn’t sleep and could barely walk… the day after the PET scan ALL THE PAIN DISAPPEARED. What?? I mean, seriously, it’s gone. Well okay, there are a few “tugs” here and there. But I no longer want to scream in agony when I roll over in bed or bend over to put on my shoes. The new onc is taking this as a positive sign, but the tests still need to be done. And I’m still scared.

Anyhow, after Cinta and I left the hospital and got a taxi back to the centre, it seemed like a good time to relax with a nicely chilled manzanilla, even though it wasn’t quite noon yet. Luckily this isn’t anything unusual in Sevilla.

good news, bad news…

25 Thursday Jan 2018

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officially radioactive!

I’ve been having routine PET scans since I was first diagnosed with stage 4 colon cancer (metastasis to liver) back in May 2008. At first they were every six months, but then once I became a member of the 5 Year Club they were reduced to once a year.  And every time I’ve been scared witless, fearing I’d hear the worst after my scan. I am very fortunate that my friend Isabel is the head of Nuclear Medicine at my hospital, so she always has a look at my scan while I’m there and gives me the results on the spot. She’ll call me into the PET area and say “all normal, nothing to worry about” and then send me on my way, not quite believing my good fortune.

But today after my scan Isabel called me into a private office and asked me to sit down.

And well, it’s kind of good news / bad news. The good news is that my liver is clean, no signs of anything nasty going on there. The bad (or potentially bad) news is that the “area of inflammation” that has been showing up on my PET scans since 2008 has increased dramatically. Over the years this area has been constantly shrinking, with each PET scan showing it a bit smaller and, as long as it kept shrinking, it was always considered a result of scar tissue. Today Isabel told me that it is back to the size it originally was back in 2008. And so now I will have to undergo more tests – CAT scan, ultrasound, colonoscopy – to (hopefully!) rule out cancer. In theory it could be an inflammatory infection, complications due to the adhesions, or any other number of non-cancer-related issues. Or it could be cancer. And so, Isabel has taken steps to get me an appointment with Oncology asap so they can start the extra testing.

I’m annoyed that they didn’t take me seriously at Emergency when I went there complaining about the abdominal pain back in November (exactly two months ago today). My GP also blew me off when I went to ask him about it afterwards, saying I just had gas and should take a pain killer. And even when I saw an oncologist at the beginning of January, she was totally dismissive about my complaints (you need to lose weight, I’m sure it’s just gas), and reluctantly booked my next PET scan.

The good thing is that now Isabel is setting the wheels in motion for me to get the appropriate extra testing done and, more importantly, to have me taken seriously by these other doctors. Meanwhile I am fluctuating between absolute terror and total denial. How’s your day going?

oncology visit

05 Friday Jan 2018

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Ever since “Lost Saturday” I’ve been quite concerned about the abdominal pain I’ve been experiencing since the beginning of November. I thought for awhile I’d figured out the source of it, but then it shifted, and now it’s worse than ever… really, wtf?

Anyhow, I finally got to see an oncologist today to request my annual PET-TAC scan (it used to be every 6 months), and that was fine. Or as fine as things can go when you are talking to a doctor you’ve never seen in your life, and you are talking about your life… In this case the doctor put in the request, but then she said to me that this would probably be the last time I will need to have scans. Ummm… what? No more annual scans? Why not?

This is a photo I took back in 2009 to show the scars I’d been left with after the 3 slice & dice abdominal cancer ops (there was also a subsequent non-cancer related surgery in 2011, following the same scar lines). So that area of my ever-ageing body is pretty much a big mess. If there are reasons (adhesions?) that I have PAIN all the time now… why can’t anybody tell me this? It’s very frustrating. All I can do now is wait for the next PET-TAC.

hope 2019

03 Wednesday Jan 2018

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Continuing the “tradition of hope” that began back in 2009 with my first ever Photohunt entry on January 3rd. The theme that week was “hope” and I put up a photo of my battered old daybook turned to January 3rd 2010 with the words “STILL HERE!” written on it. Having just finished a second stint of chemo a few months previously this felt like a very bold – and hopeful – thing to do.

Anyhow, since then I have posted a similar photo on this date each year. So, as always, here’s hoping that I will still be here January 3rd 2019, and will see this page in my book… and smile just like I did this morning.

self help

19 Tuesday Dec 2017

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So remember my recent “lost Saturday” spent at Emergency due to scary lower abdominal pain? The doctor decided that it was probably “something muscular” and not cancer-related, so I was sent home, still in pain and none the wiser. But during a subsequent email conversation with the amazing Kate (aka Sledpress), she also told me it sounded like a muscular problem that may (or may not) be related to the excrutiating shoulder and arm pain I’d also been experiencing. In fact, both of those started around the same time and just seemed to be getting worse. I didn’t mention the shoulder/arm pain to the emergency doc because, although it hurt like fuckity, it wasn’t in a “scary” location, and I didn’t think they were related.

Anyhoodle, time went on, the pain kept on, nothing was changing… until I went to Málaga! Since Kate had me convinced at this point that the abdominal pain was muscular I started looking for triggers, daily repetitive movements that might be contributing to my discomfort. Then, as if by a miracle, after two days in Málaga my belly pain was easily halved. What? I couldn’t believe it, and I also had no idea why. But it became clear after I got home and went to shower. You see, the new Casa Azahar has a lovely walk-in shower with beautiful tiles. I love it. But there is no bathtub. Meanwhile, at the Málaga apartment there is a bathtub/shower. Difference? Well, at a risk of TMI, I realised that having a bathtub provides a handy footrest when *ahem* trying to reach certain body parts. Just having a flat shower floor requires a different sort of twisting and bending and… BINGO. I found the source of the problem. Or at least so it would seem. I think it will take awhile for the pain to disappear completely, but it’s amazing how much better it got just after two days of NOT DOING THAT (repetitive stress movement). And as soon as I got home I bought myself a plastic shower stool, so I hope that will help with a full recovery.

Meanwhile, Christmas came early while I was away, and I received these two mysterious looking items from Kate. Luckily you can look these things up online and there are even videos to show you how to use them. Because honestly, would you have the slightest idea? And once again, after just two days of using that coat rack looking thingy up there (actually called the Theracane) my shoulder/arm pain has been much reduced. Like whaaat?? For almost two months it’s been frozen solid in PAIN and sleeping was almost impossible. Now I can feel it getting a bit better every day. Incredible.

Of course I need to keep the treatment up, and start doing more preventative self-massage stuff. For example, that little 4-way knobbly thing up there is perfect for when I’m sitting at my desk to release pressure build up in my lower back (well, along with regularly getting up and moving around, natch). It’s been two years since Kate sent me the Trigger Point Therapy Workbook, and I haven’t used it nearly enough. But that stops now.

So the lesson here girls and boys is that we really should be more proactive when it comes to our own health care. Because who knows our bodies better than we do? Both the emergency doctor, and later my GP, just prescribed some scary pain meds (possible side effects: anaphylactic shock!!), which I decided not to take. Because I thought the pain was there for a reason I still hadn’t understood, so I didn’t want to just numb it. I wanted to know why it was there.

Of course both doctors and medical treatments have their place. I wouldn’t be here today if not for the top surgeons who saved my life, and the others who made sure I got the best cancer treatment (almost) ten years ago. And many chronic illnesses are often best treated with drug therapy. But this time I am glad I didn’t go with the simple painkiller option.

Also, I’m not criticising doctors who take the “take two aspirin and call me in the morning” route, because they are so overworked – I’m told that GPs here are only allowed about 4 minutes per patient to stay on schedule, and hopefully they are good enough diagnosticians to point you to the right specialist if you need one. I also agreed with my Emergency doctor that she had done her job (no emergency here, let’s move on). Which then left it up to me to figure out what was going on. And thanks to Kate, and a quick trip to Málaga, it seems things are now getting better.