ThisTrain Terminates here, All Change Please.

Barring miracles, this is probably going to be my last post. I can’t type anymore so Colin, my partner, is doing it for me. I’ve been in the hospice for the last ten days. 

I can’t begin to explain the symptoms and everything I’m feeling. I need help for everything and never thought I’d ever be in this situation. The staff here are marvellous. 

The support I’ve got from every direction from you, has been enormous, but not unexpected and I just want to say thank you to all of you.

Footnote by Colin,

Jim sadly passed away Saturday 2nd March 2019, 5 Days before his 64th birthday. 

RIP Jim, suburbs will be quiet without you. 

Glad to be alive

In the 2½ weeks since I last posted quite a lot has has happened. On the positive side I had my first visit to the local day hospice as a day patient and it was really relaxing. While I was there they gave me a turbo bath. I can’t manage a bath at at home, I can only have a shower with assistance so getting a turbo bath was something I found soothing and good for my skin because I was able to add bath oil to help with the flaky dryness caused by the cancer and my drug cocktail. The group on the day I go is mixed and it felt upbeat, too, no downer moments. One guy brought wine to go with the terrific lunch they provided that he shared but, unfortunately, I had to decline for fear of throwing up or dropping off to sleep.

On the negative side, two days after the hospice visit my pain got so bad that I was admitted to hospital again where I spent 5 days. They got my pain back under control but not soon enough so I could get to week 2 of the hospice. The main reason I was admitted was excruciating pain but I had also lost the use of my left arm and left leg and had left side weakness, which made the emergency doctor who came to the house wonder if I’d had a stroke or if the cancer had spread into my brain – spread into the brain is rare with prostate cancer but then so are spread to the liver and lung and my bloody cancer has done that, the bastard.

I had a brain CT, which showed I’d not had a stroke and neither had my cancer gone into my brain. That was a big relief, I can tell you. But my relief was short lived because they also did an MRI on my spine and that showed yet more extensive spread along the whole length of my spine that had not been there a couple of weeks ago.

The way I am now is very fatigued and I have less mobility than a short while ago. I get very breathless as well, especially when talking. Just talking on its own tires me out but if you were thinking of calling, please do, because it’s great to hear from people even if it turns into a two minute conversation with me not saying much. My appetite is still good but I have to really fancy what is put in front of me or it gets left. My legs are swollen with fluid and the skin feels tight. I get a little more pain when trying to get up because the skin tightens even more. All these little things we just take for granted, eh.

Despite how I feel, despite the pain and everything else, I’m still glad to open my eyes in the morning. I’m doing everything I can to ensure I keep on doing that and, like I’ve said before, I couldn’t do it without the support I’ve had from every direction.

Where I am we’ve started to emerge from the worst of the winter (I’m writing that with fingers crossed) and we’ve had a few spring like days with the sun shining. If you stay out of the stiff breeze, and the chill it brings with it, it makes you even more thankful to be alive and I’m hoping to enjoy that feeling for a long time to come.

Mellow Worry

I saw my oncologist yesterday. I arrived at the hospital in a state of mellow worry. I guess that without my cocktail of very nice meds I’d have felt just pure worry.

We went through my latest CT Scan, the one that was done when I was in hospital last week. It’s not good. In the PET Scan i had done in November there were no growths on my liver but there are quite a few now and they were described as extensive. I saw the scan and to my untrained eye the growths looked just like darker grey areas covering large parts of the surface of my liver. The thought I got in my head while looking at them was “cobweb”. The nodule on my lung on its own is still to be confirmed as cancer but, as my oncologist said, given my history, she’d be surprised if it was anything else.

Just like I knew she would, she had a plan ready. She’s taken me straight off the Bicalutamide I’ve been on for the last four years and put me straight on to Enzalutamide, which is a systemic drug that will treat the whole body. I take it as a 160mg dose consisting of four big 40mg capsules taken at the same time once a day. They really are big, too. It’d be impossible for me to take two at once even with my big mouth.

After just two daily doses of the new med I’ve not yet developed any new side effects (I’d have been surprised if they started that fast), but all meds have them and Enzalutamide’s main ones are extreme fatigue and hot flushes. The Zoladex I’m on can also cause hot flushes and it’s like having someone pour a bucket of hot water over my head for anything from 2 to 10 minutes several times a day with nights being worse and my pillows needing drying all the time. I wonder if Enzalutamide will make the existing side effects worse or if they’ll just blend in with the Zoladex ones. I’ll let you know.

It’s not just the spread to my liver and right lung. I’ve also got further spread to my bones, including in my spine at L2, and it’s been rapid. Combined, all these new growths are serving to make me more and more immobile without lots of help. I’ve improved in many ways since last week when the pain got so bad that I couldn’t move at all, but I’ve now lost my independence in almost every way. Indoors I have a zimmer frame to help me in and out of bed. I have another for the armchair. I have something similar for the toilet.

I can no longer go out by myself because I can’t walk unaided and I can’t drive because of the meds, the pain and the inability to concentrate. Besides, I can’t get in and out of the car unaided. For “walking” I now have not just a wheelchair for the days when my legs are like jelly but also a walker for when I can walk a bit but need to stop and perch because the pain and breathlessness are too much.

It’s important I try to walk and stay as mobile as I can because I then stand more chance of keeping some muscle strength. I figure muscle waste will mean more pain and I’ve already got far too much of that. The painkillers I’m on help a lot but not completely.

One major improvement in the last week is my appetite. The hospital food was too good to turn down and it seems to have rekindled my gluttony gene with a vengeance. I’m thoroughly enjoying my food, little and often, and full fat high sugar decadence. Yum! I’m regaining some of the weight I lost over the last couple of months.

At my last appointment two weeks ago I asked how long I had. This time though, I knew with the new developments that things would have changed and they have. My oncologist said if I have a good response to the Enzalutamide then I might be like her other patients who had responded well and could get another year or two. She went on to say, however, that her other patients did not have the extent or the aggressiveness of cancer that I had. (I knew I was in a league of my own).

If, on the other hand, I do not respond to Enzalutamide (i.e. it doesn’t work for me) then she said, realistically, I’m looking at less than six months.

One other potential avenue, though, is drug trials. The oncologist said she was immediately writing to the UK Drug Trial Unit to ask if I was eligible for any current trials, so don’t give up all hope on me yet because I certainly haven’t.

The response from my partner, family and friends has been wonderful. I knew it would be. Everyone is upset and, while I don’t want them to be, I know it’s because they care about me so much. I feel that I’m the luckiest out of of everyone going through this with me because I’m the one with the drugs cocktail that keeps him feeling calm, mellow and able to sleep like a log.

Shit week

This week has been a shit week. I started it unable to get out of bed without help. It went downhill fast Wednesday evening when I was unable to move at all, was trembling as though all my muscles were in spasm and then was taken to hospital by ambulance where I am right now, but at least I’m getting out today because I can do my own pain relief at home easier than in a hospital ward. The staff have been marvellous and, amazingly, the food has been good, but home is better.

That’s the good news – now comes the bad.

I had a CT Scan the day after I got here and that’s revealed stuff I had never before been told. I was shocked senseless as it was so unexpected coming just two months after I had a Choline PET Scan.

As well as the the spread that the PET Scan had shown, which I wrote about a few posts back, I now have a suspected growth on my right lung and I have several more definite growths in my liver. This morning a bit more of the CT report was explained to me and I also have a growth on my spine and somewhere else in the bones on my right side. Maybe that was explained to me on Thursday, but I was in a bit of a state at the time and not exactly up to taking everything in.

I’m guessing my lifespan could now be markedly shorter than I’d thought just a few weeks ago but I’m seeing my oncologist at her next clinic in a few days when I am sure she’ll have a plan and the guessing will stop.

Until then I’m just surmising as to what might happen next but I gotta say, it ain’t looking good. I just wish I could meet those two idiot doctors from before I was diagnosed who said (a) “you’re too young to have prostate cancer” and (b) “well, if it’s cancer it’s only prostate cancer“. To put it mildly I’d give them a piece of my mind, the tossers! Fortunately my experience since diagnosis has been our NHS at its finest. It has truly performed above and beyond for me and I have no idea how anyone in my position copes without such a marvellous health service as we have in the UK.

I’ll post again when I know more and will continue to post for as long as I’m able. Hopefully that’ll be for a long time.

Fuck this disease!

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.

It ain’t just walking I can’t do anymore

Three weeks ago I finished the last of the 5 daily palliative radiotherapy treatments on my paraaortic lymph nodes. I feel better now than I did then but I’m still far from recovered and it looks like I might be even more decrepit than I previously thought.

Having been mostly cooped up for the last 6 weeks we thought a few days by the sea would do us both good, so we packed up the car and drove the short distance south to Brighton. Well, dear readers, one day after arriving, I can tell you I’m totally shagged out and am wondering if the journey back might finish me off. It won’t, of course, but I’ll wish it had and it’ll probably result in another lost day in bed recovering from something that, not so long ago, would hardly have produced a yawn.

Not counting nocturnal pees, I slept for over 10 hours plus a further hour’s doze last night after the “long trek” south, which meant I missed my first pill-fest for today. I have to take loads of pills, many of them painkillers ranging from paracetamol to morphine, and I had almost convinced myself that I could cut down on them all and maybe even stop, until I tried to get out of bed after missing this morning’s dose. It made me realise I was kidding myself because I could hardly move and the pain that I thought had gone was well and truly back after just a short delay in taking the pills.

It appears I’m now a frail, doddery old thing and I don’t like it! I don’t feel old in my head, in there there’s still an 18 year old wondering what the fuck is going on, but outside I’ve turned into my granddad. I feel old and, if proof is required, absolutely every minor exertion knocks me out. This is still very difficult for me to accept considering it wasn’t that long ago that I was able to go for slow walks providing, of course, they were on the flat and there was somewhere for me to sit every 5 or 10 minutes. I cannot even attempt them the way I am right now.

A “blog-friend” of mine, who’s much younger but who had the misfortune to get this bloody disease in spite of his young age, recently published another of his well written posts.

He has me in stitches sometimes and his latest post was no exception when he described his frequent wanking “in the name of penile rehabilitation”. Stef, if you’re reading this, carry on wanking for as long as you can and please have one for me, because it ain’t just walking I can’t do anymore.

Oh, by the way, I almost forgot, my latest PSA came back showing a slight increase from 0.732 to 0.8. If my PSA was anything to go by, which it’s not anymore, I would be cracking open a bottle of champagne. As it is, I’m just forcing down another meal replacement milk shake drink as I type.

More news after I’ve seen my oncologist next week.

p.s. Guys – you too can be like me but, if you’d rather not, then please click on this link. It tells you all about the symptoms of prostate cancer. If you get treated early you stand far less chance of ever ending up like me.

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!

Turning a corner

So far December has been crap. I won’t repeat all the things that have happened since the 1st of the month, they’re covered in my last few posts, but what’s new is that I’ve now finished 5 palliative radiotherapy treatments which, I’m told, were aimed at my paraaortic lymph nodes, especially the one pushing against my spine at L3.

Like I’ve said right from the start of all this, you learn a lot with cancer and that’s because you’re forever looking up what things mean, where they are and what they do. Also, what happens when bits of you stop doing what they’re supposed to. Maybe not everyone, but I like to understand as much as possible about what’s going on with my body.

The radiotherapy has certainly done something, although it’ll be about 3 or 4 weeks before we’ll know if it’s achieved all it was supposed to achieve. I have a lot of ground to make up as I still need the morphine to keep the pain at a bearable level, I’m still fatigued, I still have no appetite and I continue to lose weight and still need a wheelchair for more than very short distances. Despite all those negatives I’m not feeling quite as ill as I was a couple of weeks ago. I think I’ve turned a corner.

I hope I’m not tempting fate, especially as tomorrow is the winter solstice and it’s a full moon and there’s a meteor shower, too. Will fate be too busy elsewhere to worry about me? Fingers crossed it will be!

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.

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”.