The ifs and buts and maybes of cancer

I saw my oncologist almost a week ago. She was surprised I was still so immobile and said she’d hoped I would be much improved by that point. Me too.

There are lots of things I like about her, for one she hears what you say and she acts on it. Based on what I told her she thinks I might have an abscess / cyst near the paraaortic lymph nodes that were recently irradiated. There was a lot going on and I cannot remember if she said abscess or cyst and, in any case, I don’t know if they’re different or one and the same thing.

Two of my long term meds can give me hot sweaty flushes (the hormone therapy ones, Bicalutamide and Zoladex) but the pattern of sweats I described to her made her think I might have an abscess / cyst. She could do a scan to check but it’ll be a further month before the swelling inside, caused by the recent radiotherapy, goes down enough for the scan to give an accurate image.

For now I’m to take my temperature every time I have a hot sweaty flush and, if it goes up to 38°c, I have to let her know. If I don’t have a temperature spike I’ll be seeing her again in 3 weeks from now.

Between now and then I’m to slowly wean myself off the Amitryptiline that I was prescribed for neuropathic pain but, instead, I’ve started on two others. One is Dexamethasone, a steroid, which she said should kick in within 48 hours of first taking them and they should liven me up and increase my appetite. Well, they’ve livened me up in that when I feel like I really need to sleep I can’t, but not much effect yet on the appetite.

The second new med I’ve started is Citalopram. It’s an antidepressant. Remarkably, in spite of everything, I don’t actually feel depressed and I told the oncologist so. She explained I might not feel it but after 5 years of everything I’ve had happen there’s likely to be a chemical imbalance in my brain that could be having a detrimental effect whether I’m aware of it or not. The Citalopram should help to correct that.

I had a long appointment with my oncologist, that’s another thing I like about her – when she knows there’s a lot going on and I need to talk she gives me the time. That makes so much difference. At this point I want to emphasise that there are lots of ifs and buts and maybes when you have cancer. Definites are a scarce commodity, especially so at the point I’m at. The reason I want to emphasise that is because of other things we discussed that I wasn’t sure whether to mention because they may or may not happen and it’s all taken me this long to get my head round it enough to write it down, but one of the reasons I write this blog is to “tell it how it is” and another is to dispel the myth that prostate cancer is “the one to get”, so I can hardly leave this part out, so here goes.

My oncologist again said that my cancer was behaving very aggressively despite my “stats”, especially my Gleason score which is 4+3, that say my cancer should not be as aggressive as it is. When she next sees me, or soon after, she might start me on a drug called Abiraterone, which is a type of hormone therapy for advanced metastatic prostate cancer that has stopped responding to other types of hormone therapy. It’s not a cure, but it can help keep my cancer under control and could help me live longer. Even if it doesn’t keep me alive longer it might help relieve the pain and tiredness I’m feeling.

There’s no saying it will work nor how long it will work for. One certainty is that it won’t work forever because the bloody cancer learns to adapt. That’s one of the reasons for holding off starting because the sooner I start it the sooner it stops working.

My partner comes to every appointment with me and my oncologist fully involves him, that’s another thing I like about her. I’d warned him I was going to ask the “what’s my prognosis now?” question so he could make a swift exit if he wanted and thankfully he stayed. I knew he would but I wanted to warn him this time.

I also like my oncologist’s truthfulness – she knows I want the real answers not the comforting ones, and she told me that if I have a good response to the Abiraterone then I could have a few years, not lots, but a few. However, if I don’t have a good response then it could be as little as 1 year from now. Like I said, there are no definites!

Maybe if that had been a definite I’d have processed it sooner, but it’s still dangling there in mid-air waiting to be fully taken in. We’re still both a bit numb but writing this is helping me make sense of things and to put them in some kind of perspective.

Too many people still think prostate cancer isn’t so bad, but unless you’ve been checked out at least once a year from age 45 onwards (even earlier for black guys) you could end up in the same position as me and, take my word for it, prostate cancer is a nasty bastard best found and treated early on. Getting an annual blood test won’t stop you from getting it but it could make the difference between early cure or early dying.

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Happy New Year

I used to be able to just soak up information like a sponge soaks up water, so much so that my eldest brother (who was bloody great) used to put me well and truly in my place, as only an older brother can, and call me “a wealth of useless information”. The sod was probably right, too.

He wouldn’t call me that now though. Because of the bloody cancer and the treatments I’ve had, and the ones I’m currently on, I have trouble soaking up even basic stuff. Sometimes I’m not sure what day it is.

Being like this makes it very difficult to get myself organised and to get my head round things, things that I’d have taken in my stride not so long ago.

Fortunately I still keep in touch with the woman who was my sooper-dooper Macmillan Nurse for the first 3½ years. I wish she still was but she moved on to a less stressful job and I can’t say I blame her. She suggested I ask to be referred to the local Community Palliative Care Team. I didn’t know there was such a thing, but it turns out there’s one in every district. I was a bit reluctant to take the advice to be referred because it’s one more admission that I’m not going to come out of this alive even if (fingers crossed) I might not be going anytime soon. But I did, and first impressions make me glad I did, because it seems I now have someone who’s my advocate and is doing all the chasing around that I’m no longer up to doing, asking all the questions I can no longer think to ask and they know a lot more about what’s out there to make my life a bit easier, and I really need that with the way things are right now.

What they can’t do, though, is to cope with things like New Year’s Eve for me.

I’ve had some fantastic New Year’s Eves over the years, but this year wasn’t one of them. I’ve got used to not going out all night and rolling home in the early hours; that was fun when I was younger but it wasn’t that I was missing. In fact I’m quite happy not to be out all night anymore. It was that in years gone by I always felt that the New Year could only be positive, bringing with it fresh hope and new experiences and plans for things to do in the coming year. This year I went into New Year on a low and I must admit that as the clock struck 12 I wondered if I’d still be here this time next year.

Nevertheless I am aiming to be and I hope that the way I’m feeling right now, both physically and psychologically, is just the nasty after effects of the radiotherapy that I finished a few days before Christmas, combined with the tear inducing hormone therapy that I’m on. Jeez, how do women cope with all this crap their entire lives?

Happy, Healthy 2019 for all of us!

Getting run over by a bus

Déjà vu. I’m knackered – apologies to regular readers who must be bored stiff reading how tired I am but imagine how bloody debilitating and restricting the fatigue is, especially when in your head you’re still 18 and there’s so much you want to do but your body says “no way José”. Luckily I still have days, and sometimes even whole weeks, when I can do the stuff I want to do before the fatigue (and all that goes with it) kicks back in.

In addition to the fatigue there are also a few other things going on that are a nuisance, not least my scrotal hydroceles. Just a year ago I wouldn’t have known what they were but, as I’ve mentioned in previous posts, cancer is like a course where you’re always learning something new and given the choice I’d rather go on learning new stuff than graduate because the awards ceremony gets a tad hot and I won’t get to go to the party afterwards.

In everyday (polite) language, scrotal hydroceles translates to swollen balls. Mine vary in size from day to day and, depending on who you speak to, they’re either something that might have happened anyway or they’re caused by one or more of the treatments I’ve had, although opinions vary on exactly which as it could have been any of them. On its own the discomfort, skin irritation and occasional pain from the swollen scrote would be bearable but, add them to the man-boobs, the flabby midriff, the loss of body hair, the gritty eyes, the occasional hot flush, unpredictable waterworks and dodgy bowels, not to mention the numbness and pain in my left leg that is causing me to limp, for some reason the big balls are a side effect too far and are really pissing me off.

What really should be pissing me off though, is that my PSA has risen from its post-chemo lowest ever level of 0.044 just six months ago to 0.176 now. It’s still very low but is obviously going in the wrong direction and at a quickening pace so, sometime in the not too distant future I’ll be going on to more treatment, which my oncologist (who I saw today) says is likely to be Abiraterone with prednisolone or, possibly, Enzalutamide. I asked her if my prognosis had changed as a result of the chemo but it looks like it hasn’t. On the bright side at least it’s no worse.

Before starting chemo I read that it could slow the cancer down by between 10 and 22 months and it’s done that, but I optimistically assumed I’d be towards the top end of the bracket. My cancer, though, had other ideas and went for the bottom end, thereby living up to its reputation of being very badly behaved or, as I prefer to call it, a right bastard. I seem to want to swear a lot more lately.

With everything that’s been happening I’ve been having lots of soul-searching moments where I ask myself if I would choose the same treatments again and, when I’m thinking rationally, I have no doubt I would because without them I’d probably be either very ill now or very dead so, for me, it’s a no brainer. When I’m thinking less rationally though, which is usually when I’m feeling down, I think the opposite but, really, the only treatment I wish I hadn’t had was surgery, not because having your prostate removed is never a good idea (for many men it is) but because if it had been known beforehand how far my cancer had already spread then I doubt surgery would have been offered to me. I made the best decision I could have at the time but if there’s a moral there it’s the one that says you should never believe scans are foolproof.

My soul searching moments inevitably end up with me wondering how long I’ve got left, which I really don’t like at all because I start counting Christmases and, based on my unchanged prognosis, it comes to a grand total of 4 or 5. Nevertheless I remain determined to prove my doctor wrong! I reckon she’d like it if I did.

Others tell me that we’re all going to die and that any one of us could get run over by a bus, which is true, but no help at all. Take my word for it, the prospect of getting run over by that proverbial bus doesn’t hang over you in the same way. At least the bus might miss me but the bloody cancer won’t.

The cancer course

Spoiler Alert – this one is a bit heavy …… 

Amongst every other bodily function chemo also mucks up your sleep pattern, it does mine anyway. I woke up at 5am today and, being the beginning of October, it was still dark. Strange thoughts were going through my head, not racing as I was still half asleep – not asleep enough to actually get back to the land of nod and not awake enough to crawl out to make some tea. 

I haven’t been frightened of the dark since I was a young kid, in fact I need a pitch black room in order to drop off, but laying there I felt scared. I thought about dying and the lead up to dying and how and where it might happen, as it surely will sooner rather than later. I thought how I really didn’t want to die in hospital because it’s so bloody noisy and none of the wards I’ve been in during the last four years strike me as conducive to a peaceful and dignified passing, either for me or for anyone who is there at the time, not that I’m expecting a crowd. I also decided that as much as I like our home I didn’t really want to die here either. I didn’t want my partner to have those bad memories when we’ve been so happy here, it just wouldn’t be fair on him, although he disagrees. So I figured that left me with a hospice, if I get the choice I mean, because none of us know when we will go and maybe, when the time comes I’ll feel differently. But a hospice seems so final, a major acceptance of my fate, something that I’ve put off admitting to myself and, whenever the thoughts have tried to come to the fore, I’ve dismissed them or, more accurately, I’ve pushed them away as quickly and with as much mental force as I could muster. However, laying there in bed in the darkness of the early October morning I allowed those thoughts to flow. I’m no less scared having done so but maybe a little further along. 

I think the catalyst for all this deep thinking was my oncologist appointment a couple of days ago when we spoke about future treatments after the chemo has finished as opposed to not needing any more treatment. I already knew chemo was not a cure in my case but talking openly in those terms has helped me. As I’ve always said, I’d rather know what’s going on and that is still the case. 

Once again that led me to thinking how this last four years (almost 5 now) has been like a training course in many ways, the cancer course is how I’m thinking of it, which I like better than “battle” or “struggle” or “fight”, all terms that imply to me that when I peg out it would be because I hadn’t battled, struggled or fought hard enough. 

I find there’s at least one more bit of learning every day but, unlike other courses I’ve done over the years, I’m not sure what counts as a “pass” in this one. Is getting totally cured the equivalent of an A+ or is it flunking out as a failure? If it’s the latter, does that make the final module, Death, an A+? If so, I’ll try to put off finishing the course and collecting my certificate for as long as possible. 

Meanwhile the dark thoughts are still there and if anything are more to the fore, and yet I feel a little more accepting, but no less scared, having let them flow. Is that another module of the cancer course completed? 

I should add, Im not expecting to go any time soon!!