A bloody week and it’s not even over yet

As arranged, I went to the hospital for the biopsy on my “mystery” tumour bright and early on Tuesday morning and was as ready as anyone can be to have a needle stuck in their back.

In the end I was told it was too dangerous to do the biopsy. There were a few reasons, starting with the tumour being too deep at around 18 to 20cm in but, added to that, it’s too close to arteries that feed the spine and my aortic artery, too. The consultant who was going to be doing it, who had a sense of humour and who I thought was really nice, explained that one wrong move on his part and I’d end up either dead or paralysed. I wouldn’t have been prepared to take the risk even if he had been.

I haven’t been left hanging around though. The following morning I got a call to go for a CT Planning Scan in preparation for radiotherapy to have the tumour zapped – it being inaccessible doesn’t make it impossible to zap the tumour and that’s what is going to happen. I guess if it is prostate cancer that my existing treatments will cover it after it’s been zapped and, if it’s a different type of cancer, another tumour will soon pop up somewhere else which, hopefully, will be more accessible and easier to get a biopsy from. The main consideration for me right now is to get the thing shrunk so that I get some relief from the pain and zapping it should achieve that, although it might take a few weeks before I feel the benefit.

The CT Planning Scan was done successfully but it was not straightforward. I’ve had loads of radiotherapy in the past, 47 sessions in total, and several MRIs, all without a hitch. They don’t faze me at all, but yesterday the two radiographers had just got me lined up in the CT Scanner and were about to give me three new tattoo markers (you have them for radiotherapy so they can get you in the same position every time) when I suddenly had the sensation of not being able to breath or swallow. I started to panic. They got me sat up and gave me some water and then had to start again.

Looking back I don’t know if it was a full blown panic attack, but I think it must have been fairly close to one. If it was, it’s my first one ever. Possibly the events of the last couple of weeks all came crashing together in my head, I don’t know. I felt tearful afterwards but I wondered at the time if that wasn’t “just” the hormone therapy, a side effect of which is to make men as prone to suddenly crying as women can be. That’s actually one of a long list of side effects. I wish I could have bawled my eyes out but that didn’t happen.

My oncologist called me this morning to say my first radiotherapy session is tomorrow. I’ll be having five sessions I think. She is so good, she knows I’m in a lot of pain and really doesn’t hang around. I feel very lucky to have her.

There’s a bit of a problem cropped up though. I hope it doesn’t stop the radiotherapy from going ahead as planned. Last night just before going to bed I pee’ed some blood. I thought it was a one off but it turns out it’s not. For the last couple of hours I’ve pee’ed blood every time I’ve been, and I’m peeing a helluva lot. My Macmillan Nurse has advised me to drink plenty to flush any infection through and to stop myself from going into retention – that’s when you want to pee, you need to pee, but you just cannot go. That happened to me just over 5 years ago and I was screaming with the pain, which wasn’t helped by the doctors being unable to ram the catheter in past my gigantically swollen prostate.

I’m seeing a GP this afternoon to have a dip test done. With luck it will be a minor urine infection that’s causing the blood and will be easily treatable with antibiotics. I hope it’s nothing more and not anything that will stop the zapping from happening.

What a bloody week this has been in every sense of the word.

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Five Years

Exactly 5 years ago today, December 10th 2013, I was told I had cancer. Getting a cancer diagnosis is not a reason to celebrate but surviving for 5 years after being told definitely is. So celebrating is what we had hoped to do today, until the bloody cancer had other ideas.

We had a day trip to Brussels by train booked for our annual Christmas Chocolate Run, something we’ve tried to do every year since I left Eurostar back in 2001. Apologies to those of you who were looking forward to receiving some delicious Belgian chocs for Christmas. I’m not lying when I say I feel your pain, because I really do and was so looking forward to sucking on a cherry enclosed in chocolate and swimming in liqueur (the cherry, not me). That would have been after us having partaken of at least one Belgian beer in a cosy little bar we like near La Grand-Place in Brussels. Next year maybe, fingers crossed.

A few things made us cancel. For starters there’s the permanent morphine induced fog my brain is in (I’ve had to concentrate so much writing this). Then there’s the fatigue that just suddenly overwhelms me, much more intense and frequent than what has become the “regular fatigue” that I had before starting the morphine. But the clincher was that I have to be at the hospital no later than 8am on Tuesday morning to have the biopsy done on the tumour pushing against my spine. That means getting up at 6am. I couldn’t see myself being out all day on the Monday and then being up in time on Tuesday. Forty years ago, no problem, but not now.

Nevertheless, we will celebrate, but on a much smaller scale. Just being here 5 years on is a celebration in itself but it won’t hurt to have a cuppa tea and a Belgian bun, which is no more Belgian than I am but is very scrumptious, and we can pretend we’re eating it in Brussels.

Without all the support I’ve had I don’t think I’d be here now, because it takes a lot more than medicines and a fantastic oncologist and marvellous medics to keep you going. The people who have given me constant moral support are just as responsible and have helped the treatments work better – and there are so many of you, as the response to my previous post demonstrated. It might sound like a cliché to say it, but it’s not, I’m truly humbled and cannot tell you just how much the response to that particular post has helped!

This last week has been bloody stressful but knowing there are so many people out there in so many places around the UK, other parts of Europe and across the world who care has been a massive boost. Everyone with cancer stands a far greater chance of a better outcome if they’ve got a good support network and I’ve been spoilt (please don’t stop!!).

To every single one of you I say a massive “Thanks” “Merci” “Gracias” “Bedankt” and “Danke”.

Cancer is a pain in the arse (and everywhere else)

My PET Scan was done 11 days ago and today I was told the results.

The cancer has now spread into my bones (it was already in my lymph nodes) and I’ve got several bone lesions, mostly small, scattered around in different places – my left shoulder, the right side of my hip and my pelvis and my left ischium or, as I would call it, the bone behind my left arse cheek.

The one that is causing the excruciating pain is not a bone lesion, as such, but a lymph node that has swollen to around 3cm (1¼”) with the cancer, which is roughly the size of an egg, that’s located near the base of my spine and is pushing into the spine and has eroded the bone where it’s pushing. My oncologist said she’s never seen prostate cancer do that so she wants to do a biopsy to see if it’s a different kind of cancer altogether or, if it is prostate cancer, to see if the cell structure of the cancer has changed.

For now I’m adding in Zoladex to the Bicalutamide that I’m already on. Zoladex is a type of hormone therapy in the form of an injection (the one I’ll have is the 3-monthly injection). Bicalutamide is also a type of hormone therapy but it’s a 150mg daily pill and I’ve been on those for just under 4 years.

Whatever type of cancer the egg size tumour turns out to be the plan is to zap it with radiation to shrink it and hopefully reduce my pain. If the biopsy shows it is prostate cancer the plan then, after zapping it, is to take me off the Bicalutamide and to add in Abiraterone. That’s a fancy new type of hormone therapy for advanced prostate cancer that has spread to other parts of the body and has stopped responding to other types of hormone therapy.

In the meantime my morphine dose has been increased, which is just as well because after seeing my oncologist I had to take my prescription to the hospital pharmacy located about 100 miles away (that’s how it felt). Normally it would have taken about 10 minutes to walk it. It took us longer and I was almost crying with the pain. A porter wheeled me back to where we had the car parked in a wheelchair.

Obviously none of this is good news but I knew it would happen eventually so I’m not in shock. I knew it was just a matter of when. What is good is that my oncologist is on the ball and has a plan. I know the bloody cancer will be the death of me, literally, but to have an oncologist like mine who is a genius and does her very best for you is a great encouragement.

What the FEC

The stars aligned today and we made it beyond the station in Oxford! I’ll cut to the chase – I finally got my Choline PET Scan at the 5th attempt and it’s all I can do not to break open the champagne.

The hospital was a short distance out of the centre and as it was just above freezing we took a taxi (damn the expense) and were treated to the sort of views of Oxford that you see on TV, complete with dreaming spires. I fully expected to see Morse investigating the latest murder in a few places but, instead, we made do with the outside of some of the colleges that we’ve seen mentioned on “University Challenge” for what seems like our entire lives.

Here’s a pictogram / schematic, courtesy of the suppliers, that gives a simplified explanation of what’s usually involved in producing the Choline that’s injected into a vein for this type of PET Scan.

As the Choline for my scan was specially brought from Berlin a few more little pictures ought to be added. I was thinking the Brandenburg Gate and a plane and a stressed out radiographer pulling his or her hair out.

Now the wait for my results begins. After all the palaver I’m going to look bloody daft if nothing sinister shows up. I really wouldn’t mind looking bloody daft! Some unkind friends might say I’ve had a lifetime of practice.

p.s. If you’re wondering why the FEC this post is called “What the FEC”, the captions in the schematic explain.

Cancelled again …. but ….

A really nice radiographer called me today from the hospital where I’m booked to have my Choline PET Scan done. He was very apologetic but said that the scan that was to have taken place tomorrow had had to be cancelled after the suppliers of the Choline tracer said they would not be able to supply the stuff. As regular readers will know, this now makes 4 scans out of 4 cancelled.

This time there’s a slight difference. The hospital asked me if I could come Thursday instead as the supplier said that, if I can, they’ll fly in a batch of the tracer especially for me by special delivery from Berlin.

I do appreciate the offer (very much!) and, as you’d expect after 4 cancellations, I jumped at it, so can everyone reading this please cross their fingers from now until Thursday because, even now, it’s still not definite.

Thanks!

30) Some parrots are bastards

One of the best “new” (to me) prostate cancer blogs I’ve read. It’s worth going back to post number 1 but here’s the guy’s latest, post number 30 “Some parrots are bastards”

Not Dead Yet

I guess I’m on the road to recovery. The problem with the road to recovery, is staying on the road. You are generally at the mercy of the cosmos. By being a good patient and following the instructions, such as taking it easy, not lifting, driving, mowing etc, drinking plenty of fluids (not beer), you can steer in the direction you want to go. However, there are forces in the universe that blow you off course. The side winds, oil slicks, potholes and breakdowns experienced by those of us trying to follow the road.

I’m just over three weeks post op. When I think back to the day I left hospital, I can’t really say that I feel a great deal better. I am better, of course, but I feel that I’m not really recovering at the same rate as the first few hours. When I left the hospital, I…

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FFS

FFS! Choline PET Scan number 3 scheduled for today has, just like the previous 2, been cancelled. I wonder how many other people have been affected on the three days it’s happened to me?

I’m unlikely to drop dead tomorrow but, on the other hand, I also know that an MRI a few months back showed a couple of enlarged lymph nodes, plus I’ve been in quite a lot of pain for the last few weeks, more than I can remember having since the period before I was diagnosed. I was hoping I’d have found out by now that the pain was nothing to do with the cancer but that hasn’t happened and I can feel the stress starting to get into gear.

According to what I was told, the supplier of the F-Choline, which is a radioactive tracer that’s injected into you before the scan, has a monopoly to supply the NHS. I don’t know if that’s true but, if it is, they appear to have not just all our lives in their hands but also our short ‘n’ curlies.

Attempt number 4 is scheduled for next week. Fingers crossed!

Pause button stuck

The bad news is that the hospital called earlier to say that the Choline tracer that I was to have injected into a vein had again failed and today’s scan was cancelled, just like last week’s.

The good news is that unlike last week we got the call before we’d left home. Small mercies, eh?

So I now have scan appointment number 3 pencilled in for next week and I’m hoping it’s 3rd time lucky and by then the company that supplies the tracer to the hospital will have popped down to the shops to get a new blender. Thinking about it though, maybe they should get two, one for the tracer and one for their smoothies because I’m convinced the problem all along has been that someone didn’t rinse all the banana out.

Good job I’ve got nothing serious like cancer ….

Hit the pause button

We decided to take the train the 65Km (40 miles) to Oxford for my Choline PET Scan as we knew it’d be pitch black by the time we got out and neither one of us is much good at driving in the dark anymore. Some might say we’re not much good at driving in the daylight either, and never were but, as we always say, a second class ride is better than a first class walk.

Anyway, there we were sitting on the nice warm train just 10 minutes from getting off in Oxford when the phone rang. It was the hospital calling to say the Choline tracer, the radioactive substance that I was to have injected into a vein, had failed and my scan was cancelled.

Nobody’s fault, these things happen, but I just wish they’d whisked up the dodgy batch and been able to tell me half an hour earlier because we were now at the point of no return.

We discovered that getting to Oxford is a whole lot easier than getting home from it! We killed an hour until our train back by slowly walking from the station towards the centre, passing the old castle and prison as we walked, which were disappointingly touristy having morphed into restaurants and eateries. The bits of Oxford we saw were not the idyllic quaint little streets that are always shown on the telly, in fact, we could have been anywhere. I guess we’ll have to come back one day when I don’t have to have a scan and have a look for the bits you see when people are getting murdered in “Morse”.

In the end it took three trains to get home, arriving back four hours after we’d left. We get to do it all again next week as that’s when I have my rescheduled appointment. Until then, everything is on hold.

Panic stations

I’ve got my PET Scan appointment. It’s next week, the day after Hallowe’en, assuming I won’t be too tired to go after a night of roaming around misty cemeteries.

Actually, as regular readers must be bored hearing, I’ve been knackered for so long I probably won’t notice the difference. What with the neuropathy in my legs and feet that has been going through an annoying phase of reaching its peak when I’m in bed, plus being back to peeing three or four times a night again, I’ve been sleeping very badly for the past few weeks, which all just adds to the fatigue.

The nocturnal peeing hasn’t been this bad since before I had my prostate removed, which is a bit of a worry because it must be happening for a reason. That reason could just be an infection that won’t shift, in fact it was my first thought and I saw my GP who gave me some “just in case” antibiotics and did a load of blood tests. Ominously, he wants to discuss the results with me, something about two of the tests showing raised inflammation markers.

What’s all this got to do with prostate cancer? Well, the neuropathy is a side effect of the chemo I had in 2016 and, as most men with this bloody disease know, it’s very hard not to think that any problems “down there” aren’t in some way connected and are pointing to it getting worse.

My PET Scan should be able to tell if anything more sinister than an infection is going on, but having almost a week leading up to it in which to think the worst is not helping with sleeping. I’m trying to bear in mind what I tell others, which is that scans and blood tests are as much to rule things out as to rule them in but, while giving that advice works, taking it for myself doesn’t.

During daylight hours my “scanxiety” is at a low level with just the very occasional ramping up to the worst case scenario when I start convincing myself the cancer has spread to loads of different lymph nodes. Come the dark, though, and such unsettling thoughts surface more freely and frequently, and there’s an awful lot of dark this time of year, great for ghosts and ghouls but not so great for putting scary thoughts out of your mind. Whatever the scan shows at least it’ll be real and not the result of an over active imagination.