WTF?!

April 28, 2014
Eamonn
WTF!?

Considering my physical condition, people often tell me how well they think I am doing psychologically, and that they don’t know how they would cope if they were given the news that they were terminally ill. I tell them it’s like thinking you’ll ever be ready to be a parent. You never will be; nobody ever is. Even those who have close insights into parenting through family or work, or who have planned and prepared it all out methodically on a spreadsheet (haha suckers, good luck with that one!)

The day that baby comes along, nothing is as you thought it would be, and you have no choice but to grab a helmet and get on with it. Similarly, the chances are the day a young registrar gives you a terminal prognosis, is the day that you will start the coping process; and those that commend me on my handling of the situation will probably do exactly the same as I have, and play the cards they are dealt (while wearing a helmet?)

This perception of my heroic stoicism is very unbalanced though. Those that praise me only generally see me when I am feeling well. They don’t understand that the only thing holding me upright are the invisible crutches of drugs. What they don’t see is the seventy per cent of the time when it takes me a day’s bed rest to recover from doing the ironing (proper army ironing, mind you!)

On those days when I feel well enough to socialise, it’s actually very easy to be positive in the moment. It’s a blessed relief from the bloody boring fatigue; the subtle institutionalisation that comes from being an inmate serving out your death row sentence in the open prison you call home. Being normal for an evening, laughing with friends, and completely ignoring the alcohol warning on your medication.

When I feel physically unwell (and other than close family, people don’t see that part), I get psychologically down too. Exactly as with the parenting analogy above, behind closed doors you secretly think dark thoughts, you have times when you want to tear your hair out (chemo left me mine), you wonder how the hell you are going to get through the day, and how come everyone else seems to be able to cope? Of course, the rational me knows the reality, but the emotional me likes to bitch as much as the next person. I fear that when it comes time to go ‘over the top’, I may well not have the courage to do so with some dignity. Or fuck knows, maybe I’ll welcome it?

Before that day comes though, I continue to be surprised as I stumble over unanticipated experiences and thoughts. For example, as you would expect with progressive terminal cancer, I have been feeling more pain recently and some of these pains have been in my left chest and abdomen. Until now the tumors have been restricted to my right lung and lymph nodes. I recently had a CT scan done to check the cancer’s progress and while it showed an expected, but disappointing increase of 300% in the thickness of the cancerous plaque enveloping my right lung, it showed no tumours present on the left lung or the abdomen.

You would think the natural response to this news is elation. Growth of current tumours is one thing, but the day they start appearing in new parts of my body is the day I start packing my mental luggage. Unbelievably though, I felt a twinge (maybe more psychosomatic pains) of disappointment that the tests hadn’t confirmed my predictions and validated my pains. I was ‘unhappy’ there weren’t new tumours showing! “What The Fuck is that all about?!”

My wife also recently found out about a new clinical trial that is being conducted internationally into mesothelioma and looked into the conditions for eligibility. It appears there is one small, but critical condition that I don’t comply with. Nevertheless, my wife asked our consultant if they would still consider me bearing in mind the rarity of the cancer in people my age. After all, if this worked it could save my life, literally. Remember back in the Eighties when being HIV positive was a short sharp drop? Now with the help of medication, it is possible for some people to live full and meaningful lives practically symptom free. Maybe that could happen with mesothelioma?

Despite my wife’s hopeful denial, the consultant replied the only way he could. I would not be considered for a trial unless all the selection criteria were met. No exceptions; otherwise it would skew the data and invalidate the whole study. The astonishing part is how relieved I was to find out I was ineligible. I wouldn’t have to make that decision, or go through any of the inconvenience of going through the trial. Surely I should be desperate for any chink of light, but apparently I’m too lazy to live. Again I pose the question, “What The Fuck is that all about?!”

Bizarre reactions like these come and go soon enough, and whether it’s the drugs or my generally sunny disposition, I came out of that consultation feeling that the overall news was more positive than I had expected going in. I had worried I may have hit the tipping point and might have to start the process of explaining to my children the morbid realities of the situation, (never mind the horrors of drawing up the step by step process sheets on how to turn on the TV for my wife.)

However, instead of staring down that particular double barrelled emotional shotgun (and all that exciting technical documentation), I started fantasising. Imagining that life might actually go on for longer than I previously felt was possible or realistic. Maybe we aren’t just talking months here, maybe I could still be here for (and I whisper the word), years?

My consultant is keen for me to start a new round of chemotherapy as soon as possible, and if that goes well who knows how much extra time that might give me? If that was to happen though, what would that actually mean? I honestly haven’t even contemplated the possibility. The truth is somewhere down inside my subconscious all my plans have been designed around me having a couple of years, maybe three at best, from my diagnosis in January 2012. But what if I live longer than that? What if I live another five years? Or ten? I haven’t prepared for that at all. Could I go back to a ‘normal’ life?

It was at this point I remembered I take permanent opiate pain relief, steroids, and a tub full of pills and potions just to get me out of bed in the morning. Who the hell am I kidding? I have to have a nap after doing long division for goodness’ sake. Nevertheless, I realised that despite the unlikelihood of such an outcome, the idea of returning to a ‘normal’ life scares the shit out of me; maybe even more than the cancer. Shouldn’t that be my ultimate dream? For what I expect will not be the last time, I ask myself, “What The Fuck is that all about?!”

I mean, seriously, WTF?!

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25 Comments. Leave new

Good post! I’m not in the same position (digits crossed), but I’ve been going through similar conversations with myself – as I’m sure many others affected by C do. It’s just pleasing to have somebody put the words out there…

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Hi Theo,

I thought after reading your blog and looking at the Macmillan and CRUK community websites, the thing about cancer that makes it different from most other diseases or illnesses (MS is an exception that comes to mind, there are probably plenty of others!), is that it seems to affect people in so many different ways, nevermind the various consequences of different medication, surgery or treatments. However, it does seem to have a common denominator in how it makes us feel psychologically, regardless of what type or prognosis one might have.

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You don’t have to have cancer, or any other terminal illness to ask WTF?! Sure, we are bombarded by ads, attitudes, and prescriptions of how to live a real, true, and productive life irrespective of our circumstances, BUT we are not always successful in accepting that we are not saints, nor enlightened beings who have transcended the murkiness of life. It is in the murk and the mud that we live, and it is in the sewerage of our thoughts and despair that we at last see ourselves clearly. For all our advances in technology and antibiotics we remain tethered to our very medieval brain which would rather cower in a burning monastery than face the barbarian hordes. Everything you wrote resonates because no matter how fucked up the present situation it is still a “comfortable” place to be. You (3rd person) have emotionally and physically adjusted to your current situation and its outcomes, so any changes are likely to scare the living daylights out of you. It’s just one of the many “fuckedupnesses” that makes life so darn irresistible. I guess with you having the C over for tea, the WTF is just more in focus now than before. Being an asshole and living with a genetically deviant heart I applaud you from the sidelines.

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Great comment Jack; beautifully stated.

I am taking a little time off from the cancer theme to give myself the opportunity to talk about some other subjects that interest me, (if no one else). Some of the points you make here are very pertinent to the topics I have in mind. I think we, as a species, are really struggling to cope with the psychological angst, or bullshit, we are experiencing since we made some fundamental physiological evolutionary steps, followed by a few significant sociological advancements. Entrance stage left, Civilisation, Religion, Psychoanalysis, etc.,

There’s a lot of neurotic omphaloskepsis (and they said it couldn’t be used in a sentence!), of which this website is a great example; and the Moebius logic of that is not lost on me at all. In fact, it’s what gets me out of bed in the morning:-)

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…and then I have to reply to my reply with, “What The Fuck is that all about?!”

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I concur with your reply to your reply. (grin) Thank you for teaching me the word omphaloskepsis – I just used to spend an inordinate amount of time looking for lint in my belly button, but now I can confidently say I practice omphalism. As for the reference to Moebius logic; you’ve lost me. Which one(s) are you referring to? Oh, and hurry up with your promised Eucharist. It may stick to my palate, but I can’t wait to sink my teeth into that pound of flesh!

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Carole Castles
April 28, 2014 9:01 PM

I am just in awe of the writing both of you and those who send in comments on what you say. I am just a beginner in this cancer club and found it very scary at first. The chemos are very unpleasant and so on. Since I found your web site (through Macmillan) I have been able to get things into perspective – as much as I am able – and to just take things as they come. It is lovely to read people say just how they feel. I got engaged on St. Valentine’s Day and was told I had cancer six days later. I was really fucked up by that. I offered my new fiancee an out which he declined and we are getting married on 26th August come hell or high water. That is enough about me, but you might be interested to hear that I am a 74 years old granny (divorced a long time ago) and he is a 74 year old widower and we met on an online dating site just over a year ago. So we are not two old stick in the muds. What I find most liberating about your writing is your absolute honesty which shine through everything you write. I will be interested in your thoughts about our utterly fucked up world. About our wonderful human rights laws which extend to murderers etc; about murderers being able to stay in Britain and other seemingly innocent and worthy people being sent back from whence they came; about our corrupt and self serving politicians; about how ‘top people’ band together to protect each other; about cutting down forests to feed our new wood pellet fired power stations; about one million people turning up to see one Pope turn two other Popes into Saints, what is all that about? There will be a lot of people sitting at God’s right hand and presumably the rest of won’t get a look in, that is if you believe in God in the first place. I come from a background in clinical psychology and my field of interest was the carers of the severely mentally ill. I was always struck by those carers who appeared to get a lot of strength from their belief in God. I was equally struck by the number of severely mentally ill who became obsessed with God, religion, the Bible, or the idea that they were John the Baptist or some such. I believe that religion has done and is doing a lot of harm since the days when men worshipped the sun, or the sea, or trees etc. To my mind these were more valid beliefs than those proposed my men in fancy outfits and dresses and hats. No wonder I am a Humanist. Well, I feel a bit better now having got all that out.

I agree that no one necessarily likes change. I know I don’t. I also agree that your brain thinks the strangest things at times. When the consultant said a scan of my chest was clear I sort of felt guilty as if I should be justifying my diagnosis more strongly, that I was not a fraud – you know the way – well I did anyway – that you think this cannot be true – it is a mistake and I am wasting their time.

I have read most of your blogs now and look forward to reading the remainder. Today was the first blog I received direct to my Apple – such excitement. Do you realise that you are building up a fan club????? The next time I write I will try to contribute something more thoughtful – but then, that is really not what this site is all about is it – this is a spill your guts site and I feel I have a lot of guts to spill – you lead and I will follow – Oh dear, I am worshipping again!! Apologies!!!

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Hi Carole,

Since starting this website, one of the unexpected results of opening my soul in this gratuitous fashion, especially since expanding it beyond my friends and family circles, is the number of people that I have come into contact with that I can only describe as Bloody Legends. I think I am going to have to add another to the growing list:-)

With regards to your diagnosis, it sounds like you are doing exactly what I spoke about in that last piece, ‘WTF?!’. You have had the worst possible news and you are coping with it the best you can. Sometimes well, sometimes less so. It does make me ‘happy’ to see you have someone special in your life to help you through this. I sometimes rue the fact I have a family who have to suffer my illness too, but I have no idea how I would manage without them there to support me, and by that I mean a simple cuddle from the kids is enough.

Honestly though, I have spoken to more (by quantity) interesting people in the last couple of months than I did in the previous forty years! And I am so pleased that you recognise the input of those others that have taken the time to add interesting or valuable contributions of their own to this website; a lot of it far more useful than the nonsense that’s fallen out of my head.

As I said right at the beginning of this little exercise, I’d really like to make this more than just a cancer blog. I’d hoped to create a forum for interested people to talk about interesting things, so I am really happy to see you have found your way here, and are apparently raring to go on some topics that I am chomping at the bit to raise. (Especially considering your background which I’m sure will lend some fascinating insights.)

I’m just starting a four piece article on Religion’s place in modern UK society, which seems to be very timely. Not only with the Pope’s sudden rebellious (but always infallible!) beatific behaviour, but also with the recent comments by David Cameron that we are are a Christian country and then the former AB of Canterbury calling us ‘post-Christian’. I look forward to your thoughts on the subject once I get them scrawled out.

In the meantime, I guess you have some wedding planning to get on with. Congratulations!

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Glad to meet you, Carole! Absolutely adore your sassy spirit.

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Carole Castles
April 28, 2014 9:05 PM

PS I am just away to google omphaloskepsis and moebius – I knew this blog was too clever for me!!

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Sorry Carole,

I’m just being a twat (it does warn so on the front page remember!) Damn you Word of the Day toilet paper!

I’m a terrible one for using unnecessarily sesquipedalianist vocabulary. I love obscure words, especially ones that describe obscure words:-) My wife is a much better communicator, and uses much more concise language. She says I’m an arsehole.

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Carole Castles
April 29, 2014 5:06 PM

Right Eamonn you are a cheeky bugger aren’t you. I’m off to the dictionary again. I am not sure you haven’t just made that one up!! I am at one with your wife, you are a very annoying arsehole, but must admit I do appreciate your efforts to confound your readers!! I just hope you don’t run out of toilet paper.

Hi Jane, I agree with you. Thank something or other that Eamonn exists. As you say, he is able to put into words beautifully, humorously and self deprecatingly (gosh, I think he is rubbing off on me!!) the feelings that we have but are unable to express sufficiently well. He has also in his own way given us permission to sound off, as we are too mealy mouthed to initiate it ourselves. I appreciated him from afar also until I was unable to resist the invitation to ‘write something’. I am so glad I did. The idea of a beautiful irreverent site like this is wonderful. I have not believed in a God since I was a child. I reasoned that if you were rewarded for doing something good by being given a coin (6 pence if I remember right) and prizes for attending sunday school, this was out and out bribery. Doing these things should have been reward enough on their own merit. I must have been a difficult child! The more I grew, the more inconsistencies I saw in the church. I was brought up as a strict Presbyterian in N.Ireland – say no more – and had to attend church up until the day I got married. I could have resisted getting married in church but was hypocritical enough to want the white dress etc. No wonder it all ended in tears!! When my first child was born I came under intense pressure from my mother to have the baby christened in church but refused totally. I had drawn my line in the sand. I have never once doubted the decision I made as a child. I used to say I was an agnostic, as it sounded less shocking to me than saying I was an atheist – coming from my background that was a step too far. Ii realised that I was being rather cowardly by sitting on the fence somewhat. But some years ago my bum got sore and I made the choice to belong to the Humanist Association and am very comfortable with that. I left my two children to make their own choices at will. My son – now 52 – has been an avowed atheist since his teens. He married a lovely Catholic girl (shock horror) in a Catholic church. The first priest asked to marry them declined but a second younger one was happy to do the deed. My son has also become a Godfather to a nephew who was christened in a Presbyterian Church (with the full permission of the MInister). My grandson, now 12, attends an Integrated College for his secondary education. For those who might be puzzled, the Integrated means Catholics, Protestants and others all together, in PC quantities. Yes, that is right, there must be the right proportions of each Heinz variety to make the school acceptable to the Authorities. I will tell you about my daughter another time or this post will go on for ever and Eamonn may fear I am launching a takeover!!

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You and my wife would get on very well I think Carole.

I must say I think your approach to the whole religion thing has been very accommodating and flexible. I guess that is what one does to get by in life as best we can, upsetting as few as possible.

It’s always been a major irritant for me; theological thrush if you will. I know people find it hard to understand why I get so animated on the subject and of course now that mortality has reared it’s ugly head, it has only heightened my sensitivity and desire to lay out the incredulousness of the entire proposal.

I think I have learned a few writing strategies since I started this whole blurting irresponsibly on the internet thing, and I’ve realised before I say a single word on the actual meat of the topic, I am going to have to set out why it is meaningful, why I know I’m probably not going to change a single mind, and yet it is still important to me to address the subject.

Anyway, I am getting way ahead of myself. I’ll start properly this week and we can masticate on that eucharist when we get to it.

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Well, I’m not clever or anything, and I don’t understand all the words you use or the cultural references you make, but thank something (not god) that you exist, and long may you do so, because every time I read a post from you, Eamonn, I find myself saying ‘that’s exactly how I feel’ but I just can’t say it like you can. So all I need to do is shut up, read what you have to say and appreciate you from afar. I’ll be very interested to read your posts on religion, having since my first diagnosis of cancer for some inexplicable reason turned from wishy-washy Anglicanism to adamant atheism.

Jane (aka Dyad)

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Trouble is, Carole, what do you do about all the people who surround you and are praying for you? Or maybe you don’t have that problem. I don’t want to hurt their feelings. Some of them are good friends. Example: I had a postcard today from one of these ‘holy’ friends saying she’s praying for me and ‘lifting me up to the love of God’. Well, thanks and all that, but I don’t remember being asked whether I wanted to go on that particular ride. My reasoning is, why should god do anything for me now if he gave me cancer in the first place? Either he’s omnipotent or he’s not. If he’s not, then he’s not god. If he is, then why the hell doesn’t he sort out all the woes of the world? And don’t mention man’s free will….

I’ve engaged a humanist to conduct my funeral and booked a plot in a beautiful natural burial site. No coffin – just a felt cocoon with appliqued leaves – it’s a work of art. Pity I won’t actually see it. But you are going one better and getting married! At 74! with cancer! Way to go, girl. As Eamonn says, what a great way to deal your situation.

Sorry, Eamonn, if we are straying from your point. Oh, and I had heard of sesquipedalian. I’m a prodisestablishmentarian – does that make me a sesquipedalianist?

cheers, Jane/Dyad

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You two are going to make this a lot of fun.

Jane, I don’t know if you read one of the earlier articles I wrote called Terminal Velocity, but it relates directly to people’s insertion of God, religion and the afterlife into our situation whether we are interested or not (of course with only the best of intentions, and I genuinely appreciate their sentiment). If you haven’t, you might enjoy that, but especially have a good read of the subsequent comments which became more fascinating as they went on.

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Carole Castles
April 29, 2014 11:01 PM

Jane, I have more people praying for me than I could shake a stick at. People can’t help themselves. Those who know me well preface their holy wishes with “I know you don’t believe but ……..” I look sincere and thank them. That is all you need to do. They mean well. It is not my fault they believe in what they are saying. If someone becomes too holy for me I just tell them the truth that I am not a Christian and enjoy watching the shock in their face as they wonder what to say. You are not responsible for their feelings so will avoid hurting them by saying a simple thank you. There is no need to hurt people who only have good intentions. You have no need to explain yourself. I used to call myself an Agnostic as it seemed less shocking than to say I wasn’t a Christian. I was really sort of sitting on the fence. Then my bum got sore and I became a member of the Humanist Association. There is no way these ‘holy’ people will be able to relate to what you are saying because as you have pointed out in your post their beliefs are irrational, illogical and they totally ignore well documented science and history.

I just love your funeral plans. We don’t have a woodland burial site as yet in NI. The felt cocoon sounds great. I am opting for cremation as I don’t want to lie in a wooden box in a cemetery. I will be sprinkled off rocks into the sea at my favourite beach near my home. I also fancy the cardboard coffin Hayley had at her funeral in Coronation Street, painted green with lovely bright flowers all over it. I will, of course have a Humanist funeral (if they are legal here yet, we are always out of step with the “mainland” as it is often referred to).

You have totally made me proud Jane. Your little dig at Eamonn is absolutely brilliant. I think between us we will be able to keep him on his toes. Well done!!

Carole

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Carole Castles
April 29, 2014 11:26 PM

PS I forgot to mention that my young sister, whom I love very much, has been a missionary in Peru for all her working life. I know she prays for me every day. She knows what I think but she continues to pray that I will ‘see the light’. We have discussed her faith and such things at length during her four yearly visits home. There is never going to be a meeting of minds on that subject. She has just retired as Head of a large school in Arequipa. She is regarded with the utmost respect and honour by all and is feted as a celebrity almost. She has just been awarded the BEM in the recent New Year’s Honours List. She went to Lima for the presentation by the British Consul to Peru. There is so much wrong with this picture in my head. This all puzzles me and confounds me. I can’t really get my head round it. My brother and I have visited her in Arequipa a couple of times and were amazed by her status in life. But then, she has lots of people praying for her back home and God looks after her. Maybe I am missing something…. The school band – a very large and very military goosestepping band – played on the tarmac as she disembarked from her plane on arrival in Arequipa from a home visit a couple of years ago!! I have seen videos of my sister goosestepping along at the front of the band in fine style. Mindboggling. The band has been the champion school band in Peru for some years now. Her home is now in Peru and she is staying there in her retirement in one of her two houses!! What can I say? Maybe someone can explain all this to me?

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Carole, have you seen The Book of Mormon? Bearing in mind your sister’s life story you might appreciate it above and beyond most. As for me, I can say without doubt that it was the single most entertaining night out I have ever enjoyed. The music is wonderful, the humour is irreverent and brilliant. I cried laughing for two hours, I can’t recommend it enough.

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Carole Castles
May 3, 2014 10:09 PM

Hi Eamonn, I assume your question isn’t exactly a literal one? Yes. I have seen the Book of Mormon – I have even had a little read at it. But I assume you must be talking about a show? When I was about 12 we had a couple of Mormon missionaries staying with us. Just as you would expect, I remember a very serious pair of very polite young men, always well and neatly dressed, going about their business of trying to convert the locals. I have no idea how successful they were. I clearly remember that one of their mothers used to send over Angel cake, which was a very exotic revelation to us all. In later years I have done a lot of travelling. One of the places I have been is Salt Lake City. I had to visit the Mormon Temple of course, and what a professional tour of the place that was!!! Slick beyond belief. I saw the memorial sculptures of the early settlers making their way west with horse and cart, and the large building where reputedly the ancestry of everyone on earth is stored. I assume they must mean everyone in the civilized world. I can’t imagine that they cover all of Africa, South Africa, Papua New Guinea and so on. But then, maybe they do. I went to a practice of the famous Mormon Tabernacle choir but that was all it was, a practice, and I only heard disjointed bits and pieces which was very disappointing. One very impressive demonstration of the amazing sound quality inside the very large building was when a man went up to the lectern on the stage, dropped a pin, and it was clearly audible. I’m telling you, that man Joseph Smith was quite something. One very interesting thing about Salt Lake City is that some of the original Mormon houses, even though not very large, have many chimneys. When polygamy was practiced each wife had to have her own stove to cook on so you can see houses with from 2 up to 7,8,9 chimneys. Mormon men must have something going for them!!!

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Yes Carole,

I do mean the show. Having your background and reading you comments over the course, I would be surprised if you didn’t find it brilliant. When I went I was expecting an anti religious polemic, but actually it’s a musical about friendship (well, and the occasional eyebrow raising comment that highlights inherent ridiculousness of religion.) And yes Joseph Smith and Brigham Young were both “characters” by all accounts:-)

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Jeremy allen
April 30, 2014 2:10 AM

Hello Carole.I enjoyed your words here so thank you.I was intrigued about the part about people who thought they were God,john the baptist etc.. Most interestingly because I AM John the Baptist!!!!!!!!!! Keep it coming all..
The sooner we have the religious stuff on the table here the better.

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Carole Castles
May 1, 2014 3:04 PM

Hi Jeremy. I hate to break it to you but if you are John the Baptist I am the Virgin Mary

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Great blog, you write eloquently. Incidentally I saw your article in the Meso newsletter as I am the Ambassador for them in Hertfordshire, and I too live in Harpenden. Keep writing and posting all your thoughts on life, the universe and everthing, its a great read! Kirsty

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Thanks Kirsty, let me know if there’s anything I can do to help.

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