June 30th
It started around March I guess, driving to work on the day of my annual exec medical. Mrs H asking what blood tests get done and with me trying to explain but mentioning that the PSA test is something you must opt for. From what I remember it’s because it’s can be a temperamental test that can throw up false positives that send unfortunates down a road they really don't want to go down for no real reason. The PSA test you see is the test that can tell if the wall of the prostate is beginning to deteriorate or go through changes that may be a precursor to cancer. But these PSA levels could also be raised for any number of reasons and well, that’s easier to cope with.
This was all explained to me by the Dr carrying out my exam, "you sure you want this" he said, "this may be the result". I recalled my discussion in the car that morning, "you might as well get it done" Mrs H said, "you are 50 now", "I know, I'm only 50" I said, "prostate trouble is an old man’s problem, isn’t it?" "Just get it done, better to know you’re ok", and I agreed. So, a week later, again on my drive to work with Mrs H beside me, the Dr called, "Good morning Calum, we have just had your PSA test results back, now, for a man your age, we would expect a reading of 3 or thereabouts, yours has come back at 3.7" , I'm thinking, optimistically, that is thereabouts, but not thereabouts enough for him, "it’s a little elevated for my liking "he continued, " my advice is to make an appointment with your GP and get it checked out."
Well, that was not the outcome I hoped for, but Mrs H is positive, "it could be raised for all sorts of reasons, he told you that", "I know , I'm only 50 , any number of reasons" I agreed, and never thought any more about it, until sitting with my GP explaining the whole sorry mix-up. "Anyway, he says I should come and get it checked out with you, my reading was 3.7, which isn't that high, is it?" "No, it’s not", she cheerily confirmed, "and you never know, perhaps their machines were off, I reckon we should run the tests again and see what we get" "good idea" I said, "I'm only 50, we'll knock it on the head right here."
About 10 days after that, a letter drops through my door telling me their machines gave the exact same result, and just to be safe and get to the bottom of why it’s up a little, it is best we ask a consultant to have a look . "OK, again, don't worry, it'll be fine, the Drs haven't felt anything odd up there", Mrs H says as reassuringly as she can, "I know, they've all said it feels normal, like a 50 year olds prostate should, but I've failed two tests now," "listen, the consultant will know what’s what, he'll have seen a million of these, best to let the experts have a look."
Test 3 was much the same as all the others, blood tests and a digital (digital suggests computers and technology, its not that) exam, after which, the consultant casually mentioned the prostate is "a little enlarged", but it feels OK, not like a walnut or anything, that's good, but enlarged!!! "That’s not normal is it? For a 50-year-old?" "Oh yes, it can be, nothing unusual in that, but to get it checked thoroughly, I'm going to get you in for an MRI scan" . Oh FFS, that’s 3 tests failed and now I'm on the acronyms, but I'm thinking they have all essentially been the same, the MRI will have a look right inside me, see a perfectly normal, though slightly large prostate and send me on my way, I'm only 50 after all. Now, the consultant says, the next step after the MRI, will be a biopsy. Wait, why are we talking about biopsies before I've even failed this next test, that seems a bit presumptuous, I don't need preparing for the worst. I'm only 50, surely, he meant to say, "and everything will be fine, and we'll just keep an eye on it for the very many years to come."
2 weeks later I'm lying flat in a big rotating magnet for 40 minutes, it’s a bit intimidating, I won’t lie, but not uncomfortable beyond the feeling you are having every molecule examined and judged. This will do the trick I think, this is a test I can pass, they will see pictures of my prostate, and they'll see a beautiful one, like those rendered pictures NASA puts out of far off planets, bathed in light and colour and perfectly formed. "How long before I hear anything" I ask as I'm leaving the room, "oh, about 2 weeks maybe", they say. That's reasonable, what's 2 weeks, I can wait that long to be told there is nothing to worry about, I've had nothing to worry about for 50 years, what's another 2 weeks. I do count the days though. And when my next letter does arrive, it’s again not quite the outcome I hoped for, apparently they didn't admire then frame pictures of my prostate, they thought there was an abnormality on it, they didn't say like Jupiter’s spot, but that’s what I pictured. No preamble, just right to it, "we identified a small abnormality on the left-hand side of your prostate", small?, that’s good isn’t it? Wait, my left or theirs?" "And we've made an appointment at the hospital for a biopsy, here is a letter explaining how utterly intrusive that procedure is and all the things that can go wrong when doing it, see you then."
Each test now, Mrs H has encouraged me to believe it’s the last, "don’t worry, this will show its fine", and each time I've believed her, though a little less with each one, now there is only 1 test left, after that... Well, I feel this is getting a little serious now, maybe I should let some people know what's going on, my youngest son I let in on the secret, as long as he doesn't tell his mum or sister, I thought it would be a bit of a bonding moment and show him I love and trust him, and I'll need him later perhaps to help break worse news, and my pal Craig, who fought and defeated some cancer a year or two ago, and is a precious friend who knows what's what in life. Another friend, Sarah, knows that I've been getting some tests, but I couldn't tell her about the MRI result, she's a lot of good stuff going on in her life at the moment, she doesn't need to worry about me just yet, there will be time for that later maybe.
So, the day after returning from week in Fuerteventura with Mrs H, I present myself to the hospital for my biopsy test, the final test of a series that I have all failed against my most wildly optimistic hopes. The test itself takes no more than 10 minutes, but you must be there all afternoon. You get checked in, blood pressure taken, anti-biotics given, questionnaires completed, then a lot of waiting about until you get changed into your hospital robes and led through. There are 4 others in my cohort of failed prostate examinees. Two old guys like in their 80s or something, I don't know the life expectancy of a prostate, but 80 odd years seems like they had a good one, me, and another guy perhaps in his 50s, cursed with a possibly defective part. I got chatting to one of the older boys, he was on his own, lived alone I think, he had to catch two buses to get to the hospital from the east end. We were given sample dishes to pee in before our test, they were like Pukka Pie cases and this old fella filled his right to the top and had to carry it through to the nurse with both hands trying not to spill it. The other old fella was there with his daughter because he had a bit of dementia, while we were all sitting waiting, I tried to make eye contact to hopefully strike up a bit of conversation, but her eyes were fixed firmly on the corner of the ceiling above my head, and they stayed like that for 10 minutes. I thought, she must be struggling with this whole experience and trying to keep calm, it turns out, what she was struggling with was me inadvertently exposing myself in my hospital gown.
The exam itself, is uncomfortable certainly, the letter from the hospital explained as much. An ultrasound probe, apparently 4 inches long and around the same girth as a gentleman's thumb (maybe if they said, a stout ladies thumb, it would be a little more comfortable) goes up your bum, from which special spring-loaded needles are shot out of it which first numb the area, then takes samples of the offending tissue. Obviously it felt more like the nurse had discovered a freshly fallen bough from a storm damaged tree and dragged it into work with her, proceeded to adorn the end of it with an antique harpoon and jammed that up my arse, but that was all I my head. The next 10 minutes were painless, just, I don't know, jarring in a way that's hard to describe. So, procedure over, I'm allowed to, go on my way after having a pee, that happens quickly, if truth be told I nearly pissed all over the examination bed, and off I go. My nights not over yet though, because 20 minutes later, waiting for Mrs H to pick me up, outside casualty fortunately enough, I pass out and collapse, cracking my head on the pavement and get rushed to A&E, where I spend the next 3 hours trying to get my balance and bearings back. I put it down to the shock of it all but a bad omen, nonetheless.
Now its Sunday, and tomorrow I have an appointment to go for the last results I'll get in this series of examinations. I'm prepared for the worst, I think. I only hear him saying, "I'm afraid Mr H, we have detected cancer in your prostate". I'm hopeful of course, that when he does say that, he follows it up with, "it is perfectly treatable and there is no need to write a will just yet", but it’s hard not to think of the alternatives, "its worse than I feared Mr H, we are going to have to cut you in two and you will spend the rest of your days being carried around on a velvet cushion", or even worse than that.
This last week I've been unable to think of anything else, I've prepped my boss and explained all that's going on, Mrs H has told her pal, and her parents know, as do my sisters, I wish they didn't, I feel they are too worried already. I dread telling my children, Andrew, Racheal and Craig, I don't know how too, it should be me, and it should be me in front of them explaining what's gone wrong and what's going to happen next, as best as I can anyway, and I hope I can do that without getting upset. Its twenty to 12 at night, in about 16 hours I'll know what's what, if I have cancer, if I need to be worried about it right away, if it’s unlikely I'll ever draw my pension if I've wasted time, or I still have time to waste. The die is cast, tomorrow will tell.
July 1st
I have cancer. The consultant explained a lot, some positive words were used, like mild, slow, contained, level 6, apparently the prostate cancer scary scale starts at 6 and goes up to 10. But then he said a lot of horrible things when explaining the treatment options and the probable side effects, like incontinence, impotence, bowel damage, but then tried again to brighten the mood by saying that my cancer is just young and aspiring, so maybe the best thing to do is just keep an eye on it and its growing malevolence for the next while, and when it looks like it’s getting troublesome, then we can take away your erections and bladder control.
It was all in all, a real shitty shit sandwich. I took Mrs H along for support, I thought she would be able to ask the intelligent questions when I was dumbfounded with shock, but actually, I took the news OK, I think I was expecting it, but bless , it came as a shock to her, even driving up to the hospital she continued to say everything will be fine, you'll get the all clear, she even gave me a row for organising a medical insurance claim, should I need it, tempting fate she said.
The upside I guess is, it’s not going to kill me soon, but I'm being asked to make decisions about how I want to tackle it, decisions that will have a real effect on my quality of life. The consultant’s opinion, given all he knows, is that if it was him, he would opt for active observation, which is regular periodic blood tests and MRI scans to check for changes, then treatment if it looks wise.
Downside of that is, well, I'll have cancer, the upside is I get to function as I am for a still to be determined amount of time, it could be 20 years, it could be 10, it could be 1. The clinical team are going to convene on Thursday, this week or next to discuss my case, so I may get different advice in the end, but at the moment, I think I'm going to opt for observation, and hope for the best. I've just googled prostate cancer survival rates, and it says 92% of men my age will survive diagnosis for 5 years, that's favourable odds, I guess.
I will tell my boss the news tomorrow, and ask her to keep it to herself, then I'll make plans to go and visit the kids, I owe them that at least , an explanation and some words of comfort, and I'd just like to see them. I should also ask the old Mrs H for a divorce, just in case I ever get a 6-week warning and want to marry new Mrs H in a hurry. The things I have to think about. So be it.
July 2nd
I wish I had put a communications strategy together for this kind of thing instead of making it up on the hoof. I decided to go with, I have the good news and bad news ploy. I can’t give them the option of what they want first, because the good news won’t make any sense without first hearing the bad news. Generally, it went something along the lines of, "I have cancer, but its not going to kill me anytime soon and is manageable and treatable and things will be ok." I suspect they get stuck at "I HAVE CANCER" and are probably thinking what's the good news. My boss was supportive, as expected, and actually gave me some advice that was maybe useful about doing my own research. It was harder to keep it together for my kids, I almost lost it on a couple of occasions but got my words out without any sobbing, just. I felt it was important to tell them face to face and try and explain what's happening in an honest and upfront way. Just an attempt to manage their emotions I suppose, I guess that never stops for a parent, we must be programmed to try and make our children happy. I've not been the best at that I suspect but hope I managed to take the edge off "Dad has cancer” today. I still have my eldest to go, I'm dreading this the most I think, he has given me the most beautiful granddaughter and it will remind me again, like I need it, that its much to soon for me to be leaving this planet, I've still things to see and do.
I do hope I'm not over playing the good news, I'm conscious that until the clinical meeting has reviewed my case, I don't actually know what my options are yet. But as the day has gone on, and I've heard myself explaining over and over again how early I think I've caught this, and how treatable it might be, I'm thinking perhaps a course of treatment now is my best chance of eradicating it while its still young and immature, the Herod Approach I'll call it. I feel this is a big decision and I'm not quite ready to make it yet. This needs a Pros and Cons list, maybe tomorrow.
July 3rd
I got the bottle to tell my two best friends, they are miles away in the south-east, so this was on the phone. Craig was great, I knew he would be, he's been through something similar and was wise sensible and supportive. I mentioned that it’s a worry to think that the time you have left might not be as long as you thought and planned for, Craig recognised the feelings and says it probably takes a couple of weeks to get your head fully around it and start to work it out. Sarah was a bit shaken I think, she has the biggest heart of anyone I've known and I knew the news would affect her, I was positive and continue to peddle my theory that it’s not that serious and can be dealt with, but I was on the verge of losing it near the end of our chat. Only my eldest boy and one of my big sisters to tell now, I should have the script well sorted by then.
The medical team might meet tomorrow and discuss my case, if the option for brachytherapy is still on the table, I think I'm going to ask for a referral to The Beatson for a consultation, its one of the best hospitals in Europe for it apparently so I might as well investigate seeing as its on my doorstep. In other news, Mrs H threw a mini-paddy because I loaded the tumble dryer with the entire contents of the washing machine and there was some specifically not tumble-dryable garments in there, I know she has a bee in her bonnet when she says "HONESTLAYYY" at the end of her rant.
July 7th
Everyone has been told that needs to be told. Just Jane W left, and I can’t tell her, I've kept myself together so far, I fear I would get emotional telling Jane, I might have to leave my storyboard and once that happens I could lose it. I've asked Susan to tell her, but I hope she keeps it positive too, Jane has enough going on in her life, she is strong and the most switched on person I've met, but she doesn't need to get concerned about me. My sister was fine, I know she will be worried, and I'm concerned how that will manifest itself, but I've been as positive as I can with her, the trouble is that she cares for elderly people and knows fine well what the implications might be.
I was really anxious about telling my eldest son Andrew, we have a good relationship, but I still worry about just inserting myself into his life. Mrs H couldn't understand why I wouldn't turn up at his door unannounced to say hello. I would love to, but I don't think I have the right when I've been a more distant father than he deserved. I'm immensely proud of him though, he's a good looking boy, he's learned a trade so will always have work if he wants it, has a beautiful partner and they have given me the most gorgeous granddaughter you can imagine, full of personality and good humour, she will be surrounded with love all her life. He has just stopped work for a two week holiday, I felt guilty about putting even the slightest of dampers on that with my news but its best I told him and he didn't hear from someone else, and that was a real threat as now my sister knows, she could mention it to his mum in the street. I'd feel 100 times worse if that happened. I was positive and went through the script in my head, hitting all the key points, early diagnosis, localised, manageable, no immediate danger, etc,etc. I've went over it a few times now, all on the basis of a 10-minute chat with the Urologist at the hospital, I do hope I'm right about those things. I still haven't heard anything about next steps and realised today that I have no idea what they might be and found myself asking Susan what must seem like the simplest questions when out for lunch. I should speak to an Oncologist next to speak about what's been found and what is the best thing to do about it.
In truth, I don't think its sunk in yet, it feels surreal giving this news to people, like I'm talking about someone else. Rhegan, my youngest son Craigs girlfriend, sent me a lovely little message this morning, just saying she was sorry about my news and to stay positive and things, she's a truly lovely girl and it really lifted me up, not that I've been down or depressed or anything, but I have been searching out my own company, I'll need to be vigilant for my mood changing, I can’t afford to get down about it.
July 9th
My boss's advice was to do some of my own research and get knowledgeable about this whole thing, and I did today. I'm not sure I'm happy about what I discovered. I read this great piece, which was basically a transcript of a panel discussion at some Oncology conference in The States about treating Gleason Level 6 prostate cancer, which is what I apparently have. Some, in those circles are even reluctant to call it cancer, instead hoping to relegate the condition to lesions or something, but not these three, they are quite happy that it’s called cancer and think it would be a mistake to change it, they went on to discuss treatment options, active surveillance is a favoured approach because its normally so slow to develop over time, but, it all depends, there is a difference between low risk cancer, and very low risk cancer. I think from the explanations given, I fall into the low risk category based on cancer being detected on two sides of the prostate and my relatively young age, you see, if I was 65 or 70, with this kind of cancer being so moribund, its likely something else would kill me before it did, so why bother going through the trauma of damaging treatment, but with me only being 50, there is a chance it could develop to a more serious and possibly deadly stage before I'm that old. I've not heard from an Oncologist yet, but I'm now thinking I may not be given the option of observation and I'll have to choose in what way I would like to be butchered.
It was Olive, my granddaughter’s birthday today, she is 2, I drove over to Stirling to hand in some little birthday presents, I'm so glad I did, she was on top form, all smiles and laughs and full of fun. My thing is hardly even cancer in some people’s opinions, and to be honest, I don't even think I'm considering it that way either, it’s got the same status as a verruca at the moment in my mind, but if it ever does get serious and I'm looking for something to give me spirit and a desire to defeat it, it will be to see Olive grow up into a kind, good humoured, bright and beautiful young adult, taking her place in the world and making it better.
July 11th
I got word that my case had been reviewed this morning and Laura from the Urology Dept phoned to let me know, which was nice of her. She explained that appointments would be made with specialists and they would take me through the options available, basically, terrible surgery, terrible radiotherapy or, kicking the terrible can down the road and doing nothing, for a while at least. I asked about Brachytherapy, which I'll be honest , I was beginning to think might be my best option at this stage, seeing as its relatively less intrusive and side effects seem less likely to be lasting, plus I'd feel I was actually doing something about it. But I got the impression she was ruling it out as a viable option, and that freaked me out a bit, to lose an option this early in the game can’t be good. Of course, I don't know what's best, I decided not to commit to 10 years of medical training and specialisation when I was a spotty teen and instead just arsed about until I was 30. My first appointment, I think with the Oncologists, is next Friday, which is sooner than I had expected, again freaking me out, as if someone has put my case in the priority pile. My second, with a urologist, is in a month.
July 14th
I got a bit pissed last night, I need to avoid that when I'm a bit down, it just exacerbates a mood. On the positive side though, there is a forecast your life expectancy tool that's been developed in America for Gleason Level 6 prostate cancer patients. I learned of it and thought, bugger that, but like a moth to a lamp, curiosity got the better of me. It asks about a dozen questions, the most important ones I guess around the diagnosis then produces a graphic that represents 100 men with the same dynamic and the forecast of how many would have died of untreated prostate cancer in 10 and 15 years. The good news is that only half a man is likely to have died of it in 10 years, I'm guessing the bottom half, and only 3 in 15 years. If I can get the Oncologists to give me similar odds on Friday, then I'll be a lot happier.
July 17th
I got a tad emotional driving to work this morning, its obvious Mrs H and I are on different pages when it comes to how I should tackle this. She just wants it gone, "whatever the consequences, it must be better than having cancer". I'm a little more measured I think, and willing to consider, at this stage at least, observation, she's finding that frustrating. "Typical you she says, taking the easy way". The thing is, I don't think it is, but the way I've been feeling the last few days, I'm not so sure any longer that I can carry on normally knowing what's ahead of me at some point in the future. Its almost 10 years to the day that we buried my Mum after Pancreatic cancer took her, she was 73, that age seems a long way off for me at the moment. Still, I have the Oncologist on Friday, who knows what they will say, maybe we will be comforted, or maybe it'll go the other way, I cant think of much else just now and its hard to concentrate on anything for a length of time, I feel exhausted, but I seem to be sleeping, maybe its just anxiety.
November 17th
So, It was as good a meeting as I could of hoped for I think, the Oncologist came very firmly down in favour of active observation, " listen" he said " this might never develop into anything ever to worry about, There is no way I would want to operate or even begin a course of treatment at this stage, we would do more harm than good". He explained the testing regime and what they would be looking for, we'd get plenty of warning of what was going on and all the remedies would be available when that time came. I needed to hear that of course, but I think Mrs H needed to hear it more and she was a bit happier at what was ahead of us. Now, 3 months down the line, I've had my first round of observation tests and while it’s not gone away, why would it?, it’s not got any worse.
So that's it, its been a bit of a story this, I originally kept a little diary of my feelings as all this was going on in the summer just to help me make sense of them myself and didn't expect I'd ever want to publish them, so apologies if it’s a confusing or unwieldy read, but its my birthday today, I’m only 51, a time to reflect and be thankful for all I have, the family and friends around me and the opportunities to come, writing and sharing this this has been like releasing an injured bird you found in the road and nursed back to health and I feel happy doing it.
Lang may yer ( and mine) Lum Reek.
