I’ve got some good news, and I’ve got some bad news.

The bad news is that my PSA has, as expected, gone up. The good news is that it’s gone up by a “mere” 0.075, nowhere near as much as either I or my oncologist expected.

What does this signify? I have no idea as, based on the previous rates of increase, I was geared up for at least a doubling of the previous PSA result of 0.417 three months ago and find myself pleasantly gobsmacked, if a trifle incredulous.

Assuming there hasn’t been an error (I told you I was incredulous) then it looks like my next treatment might be put off as I’m hopeful that the small increase doesn’t call for anything extra yet. I’ll find out when I see my oncologist next week but, for now, I carry on doing whatever it is I have been doing because I must be doing something right. I just wish I knew what that was.


Wrongly routed

The sheer terror that I felt on being told I had cancer is not buried as deeply as I’d thought. It came right to the fore a few days ago when a really close friend of mine who I worked with up to 4 years ago was also diagnosed with prostate cancer.

Those of us with this disease all have our own personal story but, if there’s one thing we all have in common, it’s that a prostate cancer diagnosis changes your life in ways you would never have imagined and that’s just how it is for him and his wife. In the space of just a few weeks their world has been turned upside down and they both now have decisions to make that no one ever prepares you for.

People usually rally round at times like these and he’s been truly overwhelmed by the support he’s got. I think he feels like he doesn’t deserve it but considering the support he’s consistently given to others I’m not surprised at the reaction of the people who know him. No one deserves to get this disease but it strikes me as being particularly undeserved when it happens to someone like him who has always tried to help others and has gone not just the extra mile but several extra miles including raising money for both Prostate Cancer UK and Macmillan Cancer Support.

From what he’s been told so far his cancer looks to be both even more aggressive and more advanced than mine. Lots of men who get prostate cancer get the “pussycat” version, the sort that lays on your lap and gently purrs for years and years or possibly gives you the occasional scratch to let you know it’s there, and that could be why the myth prevails that prostate cancer is nothing to worry about. But a myth is exactly what it is because there are others, guys like us, who don’t get the pussycat, we get the “tiger” and some tigers can be more vicious than others.

Since what happened to me he’s been having regular PSA tests so, although his cancer has moved too fast to be curable it is, nevertheless, still treatable. Had he not had regular PSA tests his cancer could well have got to the stage where very little could be done but, instead, it looks like he will have several treatments available that can keep him around for a good while yet. I certainly hope so!

That’s why, as shocked as he’s feeling (as all of us who know him are feeling too!), he’s already thinking of others and encouraging the other men he knows to get a PSA test because although it gets a lot of bad press it’s the best indicator there is (currently) to ascertain whether or not you could have a problem with your prostate.

You don’t have to be in one of the higher risk groups to get prostate cancer – he wasn’t and neither was I (unless you count being in our mid-50s when we got sick). Whoever you are, don’t kid yourself that it can never happen to you. If you don’t get tested for yourself and your family, if you know him, get tested for Steve.

Click on this link for more info about the PSA test: Behind the headlines: Symptoms, screening and PSA – should I have a test?

New Year 2018

As I’ve not posted for the last three months I thought it was time for an update. There have been things happening but, in a nutshell, it’s like being in the eye of a storm right now with the anticipation of what’s to come being worse than what’s actually going on.

I got my latest PSA result between Christmas and New Year and, for the third test in a row, it’s more or less doubled every three months since April 2017 and now stands at 0.417, almost 2½ times higher than the previous 0.176 just 3 months ago and almost 10 times higher than the 0.044 back in April. It is still low, but then it should be after the surgery, radiotherapy, hormone therapy and chemotherapy I’ve had over the last four years.

Because of the two previous results the rate of increase didn’t come as a surprise to me so no reason to feel shocked, except nobody told my head that so, by New Year’s Eve, the potential of it hit me and I felt a mixture of gutted, upset and fearful of what’s to come. The time of year could have had something to do with my frame of mind, Christmas and New Year evoke lots of memories after all, but so could the hormone therapy, which is notorious for inducing mood swings in men (I don’t watch sloppy movies in company these days). I started to get maudlin and wondering how many more New Year’s Eves I’d be having so it was probably just as well I didn’t have a party to go to as I would have been lousy company.

I’d also had a CT Scan a couple of weeks before the PSA test and that had shown no visible spread of the cancer but when that positive thought floated into my brain it didn’t stand a chance of taking root with the way I was feeling and instead I started counting how many treatments I’d used up and how many I had left.

It was with that in mind that I went for my hospital appointment today, which wasn’t as bad as I’d imagined it might be. My oncologist expects my PSA to continue to rise and estimated it’d be back into whole numbers by my next appointment in April but generally isn’t too concerned. For now she is going to leave my current treatment as it is as the objective she has is to eke out its effects, and those of my future treatments, as much as possible. I’m not out of treatments yet but there aren’t that many left so it makes sense to get the most out of each one.

I asked why I’m staying on Bicalutamide as, despite taking it, my PSA is still going up and the reason is that, if I were to stop, my PSA would rise even faster.

I also asked if I’d be able to have more Docetaxel chemotherapy in the future and the answer is no as all you get are the side effects but with no known benefit. However, there is a different chemo drug, Cabazitaxel, that I could have. I’ve read it adds around 2½ months on average to lifespan, not as much as Docetaxel but every extra day is worth grabbing, so definitely not to be sniffed at! When I’ve exhausted all the regular treatments I’ll then be put on clinical trials and one she mentioned was an Immunotherapy drug trial. I wish I’d written the name down but, still, it’s good to know that’s another possibility to try even if I can’t remember what it’s called.

Happy New Year.

Addendum – Since publishing this post I have found out the name of immunotherapy drug in the Trial that I mentioned above. It’s Rucaparib.

Frankly, my dear, I’m shagged out

We just had a great couple of weeks in Spain, on the beach and in the sea every day. It was warm to hot, mostly dry, very sunny and, as always, full of friendly people, both locals and tourists, especially our mates who we now regularly meet up with. As you’ve probably gathered, we like the place.

The only downside was nothing to do with the actual holiday but everything to do with my energy levels, which were noticeably down on a year ago. Last September’s short break doesn’t count as I was in the midst of chemo then but, whereas in June last year we walked everywhere, this year I needed to take several cabs and I just wasn’t up to much after eating in the evening. I could easily have slumped into bed as soon as the sun went down. If I was in any doubt about feeling more tired before before I went away, those doubts are now gone.

Now, I don’t know if this is all down to the post-chemo malaise that I’ve been told can last for ages or if it’s something more permanent but it’s yet one more chip away from the “old normal” that existed until not that long ago.

I’ve had it suggested to me that this could all be down to getting older (bloody cheek!). OK, it could be, but does such age-related change come so suddenly? When I look at others my age and a little older I don’t see them flaking out but I do see them walking, partying and, if not full of energy, certainly not totally depleted of it.

Since getting back home a week ago I’ve felt even more drained. I think I’ve got a virus added to the already present fatigue but I’m plodding on making sure I keep active although I’ve had to cut out the gym. I find myself wondering what idiot said holidays are good for you? 

As if all that were not enough, my PSA blood test was due. As anybody who has to have regular PSA tests knows there’s something called PSA Anxiety. It goes hand in hand with Scanxiety and both can drive you mad. I managed not to think about it while we were in Spain but it’s been on my mind ever since the plane home touched down with me swinging from being convinced that the cancer is dormant and will be so for some time to the PSA result coming back sky high and the cancer being rampant everywhere – not just once have I gone through this but a hundred times in the last few days. I know it’s daft, but there you go. 

I finally had my bloods done yesterday and today I got the results. The bad news is the PSA has gone up but the good news is it’s still very low and now stands at 0.074 compared to the even lower 0.044 that it was 3 months ago. I’d hoped it wouldn’t rise again for a bit longer but it could be worse I suppose. 

The other thing that my bloods threw up was my neutrophils level, which is low at 1.5. I don’t altogether understand neutrophils but I think they’ve got something to do with the body’s immune system and help to fight infections and they should be higher than 1.5, so maybe that could account for me feeling like crap? 

To paraphrase Rhett Butler in Gone With The Wind: Frankly, my dear, I’m shagged out – but not, unfortunately, in the way I used to be pre-surgery.  Nevertheless I have plans for the next few days that I intend sticking to. An elderly friend of ours who we all affectionately call Uncle Albert reaches a milestone birthday on Thursday and is having a celebration get together. As befits his advanced years there’ll be plenty of seats available so I should be OK. In fact, sitting next to him I will appear positively youthful. 

Dark Days Ahead?

The churning in my stomach didn’t go completely but it started to subside as I slowly came to terms with what my last blood test result meant. Seeing my oncologist this week helped but I’d be lying if I said what’s happening, and what’s likely to happen, isn’t playing on my mind, because it is. 

We (that’s me and my oncologist) agreed that for now I’ll stay on the Bicalutamide then, if the next PSA blood test that I’ll have in June confirms that the cancer is active again, which she thought was more likely than not, the plan is I’ll go on to a 6 to 10 cycle course of Docetaxel, which is one of the chemotherapy drugs, at the same time as taking Bicalutamide. Once the course of Docetaxel is finished I’ll continue with the Bicalutamide but will add another hormone therapy called Zoladex.

Unlike Bicalutamide and other hormone therapies that are given indefinitely until they stop working, the chemo is a set course given in 3 week cycles. I’ll have 6 or 10 cycles. I didn’t know what a cycle was so I had to look it up. What I read is not straightforward and seems to involve algebra and trigonometry, both of which I failed miserably when I was at school about a hundred years ago, but assuming mine starts sometime in July it’ll end sometime between mid-October and mid-January. I could get between 1 and 2 years more by going on to chemo now than if I waited until I was on my last legs, according to the encouraging results coming from the Stampede Trial, so 6 months of chemo, a buggered holiday and a not-so-Merry Christmas seem to me to be a very small price to pay. I can understand why some people might not want to try it because they could have a bad time on chemo and then not live any longer, but for me it’s definitely worth trying and I do want to take the chance.

For now I wait. Everything hinges on the next blood test. In the last few days I’ve had three different people tell me that I’m handling all this well. I’m not, I’m just being me. Until last week my brilliant handling of the situation had involved kidding myself that maybe things weren’t as bad as I’d been told a year ago. I’m not calm all the time (ask my partner) and I’m still unable to think of the inevitable. I put it to the back of my mind. I’ve been having restless sleeps and wake up in the middle of the night, my mind racing and thinking about everything. My last blood test result changed things inside my head. It made reality sink in that little bit more. If I didn’t know before I really do know now that nothing is going to cure the cancer (my badly behaved cancer is how it’s been described) but if Docetaxel and Zoladex can slow it down and give me more time that’ll be better than nothing. 

Extra bit: Since posting this a few friends have contacted me thinking I was already on my last legs. I’m not. Honest I’m not! Sorry if I gave that impression, but I’m genuinely touched by everyone’s concern. What’s described above will hopefully extend my life beyond what it would be if I didn’t try it. At the start of 2015 I was told I had about 7 years on average, more or less, and I’m trying to make sure it’s more. I still look very well (far too well to be offered a seat on the Tube).  It’s true that everything that’s going on has given me a lot more sleepless nights recently, and boy do I get knackered easily, but I’m out and about all the time and I fully intend going on several marches this year (and next), including the May Day one in London and the Pride March and anything else that takes my fancy, although anything after July this year might be a bit more difficult than usual.

Stomach churning moments

If this wasn’t a respectable blog I’d be swearing now. Lots. I really need to. As loudly as possible. But wouldn’t you know it, there’s a guy here changing parts on the boiler and I don’t want to scare him off coz it’s going to be cold tonight, so the screaming will have to wait until the boiler is back in working order.

My bloody PSA has gone up. In the great scheme of things, not a lot, but it’s still the wrong direction. Ten months ago, after three months of hormone therapy, it had reduced from 2.4 to 0.227. Six months ago it went down a little bit further to 0.222. Now it’s up to 0.510. Before anyone says that’s incredibly low, I haven’t got a prostate anymore so it really ought to be zero.

For now we, both me and my partner, are more than a bit shocked. Knocked for six would be a fair description, him more so because he’s always convinced things will be OK. He’s looking for information on the Internet, anything that will give us some insight, not just into what’s going on inside me but also what is likely to be done about it. We’re avoiding the sites that recommend snake oil as a cure for everything from cancer to warts, although we might come back to them.

I see my oncologist next week. Maybe she’ll tell me that it’s just a blip, nothing to get worried about. Until then the stomach churning goes on. With a vengeance. Bugger it.

Journeys to the Twilight Zone

It’s going to be undetectable. It’s going to be 20. It’s going to be 2.4. Pick any number between zero and a thousand and during the last week that’s what I’ve thought my next PSA test result will be.

I had my last blood test almost 6 months ago and am going for another one next week in preparation for my oncologist appointment the week after. Just putting that in writing makes the butterflies in my stomach prepare for take off as I am forced to think of the possible results and the potential for bad news. I am not alone in this phenomenon, commonly known in prostate cancer circles as “PSA Anxiety”.

I can’t remember if I’ve ever heard a doctor use the phrase but ask any man who has to have regular PSA blood tests and I bet 99 out of a 100 will tell you they experience it, along with the dark thoughts, the “what ifs?”, the restless nights and the short fuses.

For over 5 months I haven’t really thought much about how I’m doing. My PSA level is not something that is always on my mind probably because overall I feel pretty good, apart from feeling tired most of the time, of course. I just pop my daily Bicalutamide pill and subconsciously hope that it is doing what it’s supposed to do – preventing the cancer from growing and spreading.

Once again I’ve found keeping busy takes my mind off things. I feel like I’ve never been so active, both physically and mentally, so I have to watch I don’t overdo it. All the activity helps me get off to sleep the second my head touches the pillow but it doesn’t stop me waking up in the middle of the night to have a good worry. Little good that does, I know, but I don’t plan these nocturnal panics, they just happen. I toss and I turn too tired to get up and too awake to get back to sleep while my mind races off on its own to the far reaches of my imagination, then back again before disappearing to other very dark corners before I finally drift off to sleep again.

I suspect that by this time next week my fears will have been allayed and I’ll resume my regular routine where anxiety has ceased to play a major part. I hope so. It’ll never be entirely gone but will just be lurking at the back of my mind because I know eventually that PSA test result will come, the one that won’t diminish the anxiety but will instead cause it to go through the roof. All things considered, I’d rather have my six-monthly series of trips back to the Twilight Zone. I’m not greedy, another 50 or 60 would be fine.