working the whole day through” (according to Bing C.) or that’s what it feels like at the moment.
Out the door at 6am this morning, on the bike for a couple of miles – but feel wacked by the time I was in the office. Must be old age or something (can’t blame everything on the big C.!). Anyway, must get affairs in order for the rest of the week … but first things first, get some coffee!
Bureaucrat systems – don’t you just love ‘em. Got another PSA test done over the weekend, just to see where we are with all this given its three months since the last one (don’t the wheels just grind sooooo slow).
But now I can’t get the result over the phone, the receptionist has to do what she is told and book me another appointment, and I have to come in to see someone – arrgggghhh.
A doctor has clearly had a look at the result and thinks I should be seen in person (even though I am a big boy now, and know that I’m not very well :-Z. But neither he nor dB are around this week – so I have to wait another week to get one small, little number. And how bad can it be? Is it really going to change my treatment plans. Double aaaaaaaaaaaarrrrrrrrrrrrrrrrrgggggggggggghhhh.
Anyway, clearly feeling better this afternoon – a good rant always help. Otherwise, if I had posted this morning there would have been more doom ‘n gloom (too many late nights/lack of sleep/grim news on Nf’s cousin and the ozzie bush fires, … who knows).
Clearly prostate cancer is taking over my morning, if not my life, as this is the third post so far and it is only 11.30 and I am notionally working at home.
Just got off the phone to Vf (who if I haven’t mentioned already is a train(ing/ed?) counsellor) who called to see how we were getting on. I had to admit (we are back to the cancer=mistress thing and guilt) that I had spent the last couple of hours being “distracted” from work by the psychological impact.
Had a good chat about me (keeping it personal!) feeling up and down, seeing the positive side, high standards, depression, keeping up appearances etc … Really interestingly, she mentioned “laughing depressives” who do manage to keep up that positive front.
Her closing point was the great line she always remembers – “never believe the lies you tell other people”. So maybe I should change my mental status (for the “how are you” question) from “fine” to “up and down”.
Found another social networking site (Ning strikes again!) on prostate cancer, but got involved as they have a group section on younger men which they clealy see as starting anywhere from 65, or 55 or 50 and on down.
I am clearly so detatched from my situation – the main thing I took from this group is that there are people younger than me (e.g. 39) and in much worse shape than me with more aggressive (gleason 9), more advance cancer than me. Having said that, there are other people who have struggled with trying to make a treatment decision like me.
It would have been good to find this site earlier as there are people whose experience it might have been good to build on – like the guy who is 58 and been on active surveillance for 6 years. I wouldn’t call it full blown “purchase regret” but it feels like I am continually having to defend my decision to get treatment and remind myself why I am doing this.
In the meantime, I should put this stuff to one side and get on with some work. Feels like I have a mistress who is constantly trying to distract me from my real life, family, friends …
Had meetings (now yesterday) with both dB (my GP) and the occupational nurse at work who would gets involved with workload adjustments and assessments – including for the safety of others. Both were stressing how this is (should be?) a big shock and serious illness.
Except, I think they felt this more than me. For me, there is just this big disconnect – I don’t (at least generally think) feel ill, look ill, sound ill (except perhaps here) and you know what they say about a rose …
Except when I stop to think, I am my usual self, except for the tiredness (which is normal for any hard working parent, right?), mood swings (not very normal for me) and sometimes not necessarily wanting to be round lots of other people. But this isn’t ill is it – maybe just the strain of keeping up appearances?
Clearly the psychology of illness is important and a concern for professionals and patients(suffers/victims/survivors – we all know from PC (and semiotics and deconstructionism) about the power of labels and signs). So something to watch for, but I am not in a hurry to add depression to my list of labels.
Anyway, took some good advice from both chats which were generally positive and (to varying degrees) a good use of time.
Anyway, prostate cancer is clearly not my whole life – this is my first post in 3 days.
Another morning, another dip – getting early morning tea and not wanting to talk to anyone in the common room. This is just reallly weird. Thinking about treatment has also made me think about how well I do the being ill, and being looked after thing – which I think is probably not that well.
While I don’t subscribe to the views of the Man Song (which is nevertheless very funny), I do recognise myself in the line “I have needs .. but they’re not important”. I guess I must have picked this up from Lg as over reaction/compensation for gM.
One of the thing’s that has been a boost is the support felt from friends (some from long ago who are only rarely in contact) and colleagues. The blog seems to have been a very positive way for letting some people know what’s going on, with Jf commenting in an email that he enjoyed it, while Kf said he wished his Mum would write something down in order to let people see behind the facade of normality.
Anyway, 5 minutes are definitely up (its stretching to be more like a 10 minute rule) and its time for work.
The cover story in the New Scientist distracted me at work yesterday, throwing doubt on my treatment decision and reminding me of a gender issue which came up when seeing dK.
The (nano) second of doubt came from the idea that genetic tests could be used to tell “tigers” (i.e. aggressive cancers) from “pussycats”. If this test were available, then perhaps I could ultimately avoid treatment – so perhaps active surveillance is not such a bad idea if there is something worth waiting for. But then again, how long would I have to wait for this kind of test – and would it then just tell me I had a tiger anyway?
So the doubt didn’t linger and when I spoke to nO I confirmed that I definitely wanted the brachytherapy – although something else I read raised the prospect of a different type of (High dose) brachy – but again this seemed to have its own issue. So we are all systems (almost) go – just waiting for those dates.
As for the gender issue, the New Scientist issue was discussing the fact that the same type of cancer might occur in different places in different people. So one woman’s breast cancer might be the same as another man’s prostate cancer. Which brought back memories of dK trying to persuade (brow-beat?) us into having treatment by saying wouldn’t we want treatment is Mp had breast cancer?
Talk about (attempted) emotional blackmail – this felt like a really low blow. While treatment seems to be easier for (at least for some) women now, with the advent of lumpectomies and less impact, I am sure those women faced with full/double mastecomies (particularly preventative ones for genetic reasons) take an equally long time to decide if and when to treat. I also read something somewhere (lost the link) in a research paper suggesting that the side effects of prostate treatment (i.e. impotence/incontinence) were not major – I’d like to see the authors of that study live with either.
So while I could comment (i.e. ramble on) some more about gender differences in cancer I don’t a particular axe to grind (unlike some other bloggers I have seen) – for me the key thing is don’t you just love the sensitivity of the medical profession some times!
It was really wierd yesterday as we had an off site “away day” with one of the groups I work with. Lots of people and lots of “how are you?”s – the dreaded question. Felt there was a big wall around me, and despite getting involved in hacking together an action packed trial video (one of the training exercises for the away day) felt a bit withdrawn and lethargic.
Didn’t feel I had the energy to tell everyone about the treatment options (or at least volunteer the information), but sat with Rc over lunch and she very nicely pursued the issue and we had a good chat, particularly about the side effects and how one’s love life doesn’t necessarily become less important as you get older. Also ended up chatting to Lg about that which was a bit weird (as she’s my mum!) but nice we could have that conversation.
As for feeling tired again, as Rc said you start to wonder if anything bad is linked to the prostate cancer, but I am sure its just lack of sleep – despite sleep being one of the most popular leisure activities in our house over the Xmas hols.
Spent New Year at Nf and Df having a hectic time with us five and their two (much?) younger little people. Oh the early years seem like so much hard work looking back and so distant.
Mp and I made some time, slobbing in bed as usual, to talk about where we were up to with the decision on treatment. While I don’t feel ready to be an old man and face up to failing functions in the groin department, I do need to get on and make a decision. Nf was asking whether we were edging towards a decision, but its much more like acting on a decision that has really already been made, at least subconsciously. Its a new year, and given I am a great one for putting things off, I need to act.
In acting, its like I will be making my disease concrete. By choosing a treatment option, I will be making what is currently a set of probabilities into a course of action. And what is currently a set of theoretical side-effects may become reality – like Shroedinger’s cat, opening the box and collapsing quantum probabilities into a fixed state of affairs – but without anyone/thing dying!
Unlike the side effects which may or may not happen, the treatment will for sure leave some mark and will perhaps make the reality of situation sink in. The next challenge is minimizing the mark on my life by being informed about the treatment side effects and how best to manage them.
Xmas social occasions loom, but at least I won’t have too much of the dreaded “how are you” question as I imagine everyone will know the major news – but I guess there’s still the conversational “strokes” (a nice term from transactional analysis) that everyone uses. You know how it goes, in passing on the High Street or in a corridor …
“how are you?”
“I’m fine – and you?”
“great”
“see you later then”
…
I clearly had a blank look or slow reactions talking to Ic at work this week as she had to add “If it helps, I know the news …” to her “how are you”.
Still learning how to judge to length and detail of a response to this. Am paranoid about boring people, although KLc at work said I could never be boring – not sure if there is a double edged compliment in there.
Told neighbour D yesterday while delivering Christmas card. She was really nice about it, said she would pray for me (not that I believe, although I know friends who swear by it, and have had need of it) and invited me in to say merry xmas to Cn. Not sure if there is another story there, but had to get back to cook the tea. I am sure it will come out later when there is more time.
Missed a post yesterday – shows how little the computer can go on at the weekend, and while putting the timer on in outlook, I notice another 30+ emails backed up from yesterday (a saturday) – and life just goes on as normal.
Except its not normal – its Christmas! Spent some of yesterday putting up the Xmas tree, and writing cards. Didn’t want to do the whole round robin thing – haven’t really got the time, and would I want to tell everyone the news in a card? Its certainly a down beat way to spoil a Christmas. Not that it would really – everyone seems to have a story of major illness, whether it is a brother (Lc) or sister (Lc) or father (Kc) or uncle (Hc) and that’s just four people at work.
Still not sure about this blogging business. Have told a couple of people about its existence to mixed reactions. Nf seemed confused, Of hadn’t time to read it while Zc was moved. If its mission is therapy it might be working, but the news management and public information remit isn’t happening at present. Not sure if I have the ego for this.
Felt totally drained on the way in to work today – feeling like I am going to cry on the shoulder of the first person who is nice to me.
My first reaction (of my over analytical head – Vf and Br both commented on this in the last couple of days in a round about way) is that its just the late nights reading research reports, or last night getting the blog up. Only 5 hours sleep for the last couple of nights is not good.
But of course its just as likely to be stress and emotional strain – Lc who has struggled with her own personal problems commented on having slept 14 hours solid after a session with health professionals and I can see why.
High energy music (those punk classics “pretty vacant” and “pump it up”) have got the brain going in the right direction. Its not the decaff coffee for sure – LUTS having put paid to the caffinated variety).
Am struggling with the 5 minute rule which is starting to stretch to 7 and then I am going to have to work out how to get this damn blog to behave itself too. Trying to do this all on a minimum time budget is another source of stress – lets hope its worth it. Work is already shot to pieces with all the trips to hospital, Christmas is around the corner and its really nice that people are concerned and in touch but it does chew time – but if any of you ever get to read this, it doesn’t mean you shouldn’t call!
