The ‘H’ Word

June 26, 2014
Eamonn
Steve-McQueen--The-Great-Escape

Even before I saw the Hospice I had fantasised my escape. I would need to ‘requisition’ a motorcycle, and like Steve McQueen in the Great Escape I would launch myself and my trusty Triumph steed over the twelve foot barbed wire fences to reach asylum in neutral Switzerland, or in my case Buckinghamshire. I was so enamoured with the legendary film stunt action, I completely forgot that the ‘Cooler King’ ends up entwined in the barbed wire like some feckless teenager starring in a Youtube ‘Epic Fail’ reel, and is recaptured by his German pursuers before being returned to solitary confinement at the hospice, er, I mean prisoner of war camp.

Like most people, for me the mental image that came to mind when faced with that word, ‘Hospice’ is not a good one. At worst, an abattoir where a conveyer belt of human end product is processed like some morbid cross between a Nazi death camp and the Generation Game. But au contraire! It’s been like a week at a health spa. Okay, that’s all going a bit far, but if you don’t recognise my writing style as hyperbole by now…Well, it’s my thing, isn’t it? (I like to call it hyperbollocks!)

Let me rewind to last Thursday. I woke up in pain. For those of you that have read much else of The Big ‘C’ Blog, you’ll know by now that I get two different types of pain from my unwanted symbiote. Until recently, the day to day pressure around my right lung has been really nothing more than an inconvenience, and it has been well controlled by some fairly low level drugs.

Well, things, as they tend to do with cancer, have moved on. What was an annoying ache has reached the point of where it has taken control of my life. Over a relatively short period of time I have had to increase my medication both in potency and quantity to match the spiralling decline in my health.

Ever since my diagnosis, there has been a voice that justifies, “Eamonn, you have cancer (and by all accounts, one of the more painful varieties), you are going to suffer. Get a helmet and accept it.” I mean it’s just logical isn’t it? In the other ear, I have an endless queue of health professionals telling me, “Eamonn, you don’t have to be in pain. We can do something about it.” So I don’t know why I insist on this masochistic self flagellation.

It’s time to start listening. I’ve never been through this experience before and these professionals work with it everyday. Nevertheless, when my MacMillan nurse says to me, “We have two options: I can work with you at home to build a pain management strategy that may take some time to optimise; or, and this is my strong recommendation, you spend a week or so in the local hospice and do the same, but surrounded by the most experienced doctors, nurses and secondary health care providers in a strictly controlled environment where they have instant access to any and everything you might need…” I reel in shock and horror. She said the ‘H’ word. Why is she using the ‘H’ word? I’m not ready for the ’H’ word yet. I can see in her face her own discomfort using it.

From my description and my physical reaction to it, my wife Sarah tells me that she thinks the pain I suffer is similar in nature and intensity to labour pains. The problem is, this isn’t going to go away. I have reached the point now where I am swigging Oramorph (a liquid morphine solution) like an alcoholic continuously topping up from his hip flask. I can’t carry on like this indefinitely; I need to do something about it.

Before I know what’s happening, I’m told there is a bed available immediately at St Francis’ Hospice in Berkhamsted, half an hours’ drive from the security of my familiar, safe home. I don’t want to to go. I don’t want to spend a week away from my family and everything I know, but I know it is for the best. Packing a bag full of loungewear and more electronic gubbins than the Gadget Show competition, we drive off. Other than directions I don’t say much on the journey, I’m dreading this.

We arrive at an expansive, open, modern looking building in a semi rural location, and I am shown to my room. Hang on, my room. That’s a good start. I don’t know why, but with everything moving so fast I hadn’t the time to think it through. The last time I stayed in a medical facility was on a public ward at Harefield hospital for my chest drain two and a half years ago (when they first diagnosed me with cancer). As caring as the staff were, the experience was horrible on every level. Five days of Hieronymus Bosch Hell. Trapped and helpless. I’m sure many of you have had the joy of residing on a NHS hospital ward before. You may have had a positive experience, but others will know what is like to be kept awake all night by the sounds of despair; people sobbing, or crying out in pain, or vomiting, or worse…

“I have my own room, with it’s own toilet. Is that a TV on the wall? Freeview you say? What’s that? The door to my own patio area? Hey Sarah! Look out here, look at the gardens. They’re beautiful!”

This can’t be right. It’s nice here.

Let me explain, I am a homebird. I like the comforts of my own environment. I have worked hard to ensure everything is how I like it. So much so, that when we go away on family holidays I get homesick after three days. It doesn’t matter where we are or how wonderful it is, within seventy two hours Sarah is looking at me, shaking her head, “You want to go home don’t you?” I’ve been here a week and there hasn’t been a moment where I felt I want to leave. That is very unusual indeed.

This is a hospice. This is where people come to die isn’t it? It has to be a sad, depressing place, surely? Actually, despite all my expectations, it is not. Apparently 60% of in-patients are admitted, like me, for pain management, or for respite to give carers a break. Sure, the other 40% come to spend their last days here, and I’ve seen that process play out, but it is managed with such care and respect that it feels completely appropriate and dignified. In fact, having spent a week here has made me reconsider my ‘end of life’ plans altogether, but that is a topic for another day.

My son and daughter have both been to visit me and have felt comfortable and happy here. There is a nature trail that runs around the back of beautifully tended gardens with secret nooks and crannies. These include an enchanting natural clearing with a big blue story telling chair facing an audience of logs and tree stumps; and at the end of the trail, a bench with a glorious view of the rolling, verdant English countryside. I know we English like to complain about the weather, it’s the only sport we are unequivocally World Champions at; a title we’ll never surrender. However, for those three summer months each year, I’d match our exquisitely beautiful countryside with anywhere in the world.

The place is lovely, but even so is surpassed by the people. The level of care and support is astonishing. The first day here I spent two hours with a doctor talking through my illness and that has been followed up with lengthy daily reviews. The average NHS GP appointment last twelve minutes, (although I have a great GP, so mine always go on for far longer.) Yes, I am bored of going through the minutiae repeatedly, but this is critical to ensure that we get a working pain management strategy in place. When I walk out the door at the end of the week, my time here will not have been wasted.

At every change of shift the nurses and healthcare assistants introduce themselves and let me know who will be looking after me. So far I have been visited by a social worker, two family support counsellors, a physiotherapist, two chaplains (always my favourite!), the chef, a masseuse, a pharmacist, an occupational therapist, and a partridge in a pear tree. I have probably forgotten someone in my medicated fuzziness, but not only is this team of caring professionals supporting me, more importantly, they are also supporting my family, and will continue to do so after I am gone. I haven’t even spoken of the army of volunteers, from the garden to the kitchen, without whom I suspect the whole place would grind to a halt. Did I mention that all this is provided free of charge? And that 80% of the funding for the hospice is provided through charity donations?

As I write this now, I feel not only completely pain free, but for the first time in as long as I can remember I cannot even feel the cancer. Normally there’s always a sense of pressure inside my chest even when it doesn’t hurt. I feel totally confident in my new pain management strategy and drugs, and know I can take this away with me providing me with a hugely improved quality of life. That said, none of this affects my life expectancy, but what it does mean is that I have wrestled back some control from that bloody tumour and I can make the most of the time I have got.

So it looks like I won’t need to hotwire a motorbike from the car park after all, which is just as well as, despite several hours on Grand theft Auto V, I really wouldn’t know where to begin with such a criminal endeavour. I’m trying very hard to reach middle class level before I pop my clogs you know, so instead I’ll just give it 5 stars on TripAdvisor!

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40 Comments. Leave new

Hot wire the bike! Do it! But go easy on those lawns… they’re lovely, and you won’t improve them with donuts.

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This is just a brilliant piece of writing, you are a genius… You have entertained many people and am laughing about mesothelioma for the first time ever, you have helped me and would be helping anyone at all that first of all needs a laugh, and secondly help people you have had a brush with Cancer in any shape or form. I’m proud to say how my father would have laughed out loud at this piece of writing, and I am a little sad that he never had a chance to meet you in these strange circumstances, if you know what I mean.

Eamonn, I presume you know that Mr Mcqueen died of mesothelioma…

I have brilliant images in my head of you hot wiring the bike with my dad looking down at you, suggesting the best way to do it!

If you or you wife ever want to meet up with me at any point, when you are caught in the maze of meso stuff, do let me know as I could try and help in some way, even if I could simply just understand and know what you are all going through as a family.

Anyway, would you mind if I suggested to Meso UK that you are a guest speaker at one of their future fund raising days; I know that you would be awesome, inspirational, uplifting and really very funny? I say this knowing how very weird any premeditated these events can be; full of newly graduated medics and trial ideas without a smile or a laugh in the room for hours!

Goodbye for now, and I look forward to reading your next brilliant post!

Kirsty Nicklin
Harpenden

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Arrgh Kirsty of course! I did read that about Steve McQueen and even planned to mention it in some piece at some time, but completely forgot about it. What a wasted opportunity!

Thank you so much for your kind comments and I’m glad you enjoy reading the blog. I’m sure a brunch down at Okka in Harpenden would be lovely sometime (see I told you I was levelling up to Middle Class!)

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Great post sir, it is a real privilege sharing this time with you before you “pop your cloggs”! Tell us more about the clergy visits ;-)

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Oh we barely got a chance to get going to be fair, but they were both really great and I know at least one will be reading and posting to various articles here like Terminal Velocity. I really look forward to their views from what is a very intimate perspective. I really think it will add something meaningful to this site (Haha, no pressure R!)

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Two chaplains? Did you traumatize the 1st so much he coludn’t come back? Or had they heard your reputation in advance and so double-teamed you whilst you were on drugs?

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You know John, I think my reputation may be preceding me:-) Not at all, I really enjoyed my chats with both, but could have spent the entire week discussing Spiritual Intelligence and other such topics. Genuinely, I love it. It’s why I started this website in the first place and if I can get my finger out, I have four sketched out on God, Religion, Spirituality and the Afterlife.

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Notskidsanymore
June 27, 2014 8:30 AM

I’m reminded of the time when, a bit tired and emotional, you rode your bike very carefully at 10 miles an hour, occasionally flippin’ the bird to that annoying black and white car that was tailgating you. It was The Great Escape on Prozac.

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Ahem, that’s an experience of my foolish youth I hadn’t yet thought about relating to my children of the future. And the car wasn’t black and white, it was unmarked, how was I supposed to know?! And like McQueen, I didn’t escape, my dad had to pick me up in the middle of the night. If only I’d have had a tennis ball on me…

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Ray Ashley-Brown
June 27, 2014 9:29 AM

So Eamonn, I said I’d take a look at the website and here I am. Good stuff! Obviously I started with the article about the Hospice, which after reading your thoughts I think we need to rename the Health Spa of St Francis. I’m sitting at my desk upstairs at the moment, but I hope to come down in a bit to check in with you. It was good yesterday to meet a very spiritually intelligent atheist – I hope we might get a chance at some point to unpack both those terms a bit. I’d like to take your Great Escape analogy and link it to something you spoke about yesterday. I agree with you that nobody can really know what lies on the other side. Swiss chocolate? Yodellers? Apre ski refreshment? Beautiful scenery? Freedom? The funny thing is, no matter how many times I watch the Great Escape, I still think Steve McQueen is going to make it. Keep up the good work…

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Hi Ray,

(For those of you that the penny hasn’t dropped, Ray is one of the chaplains from St Francis.) I look forward to chewing the cud over those simple concepts of Life, the Universe and Everything over a Tring Brewery speciality beer. Although I think you may have given me more credit than I deserve for my Great Escape introduction than I meant! Name the time and place Mr Ashley-Brown and I’ll bring my existential nihilist hat.

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A great ‘review’ that everyone should read, ill or not! Hubby in the same ‘boat’ as you and know he thought (and probably still does) much as you did on admission. Personally I have visited our local hospice as well as others over the years and cannot agree more with how they are run – they truly bring dignity to everyone’s situation on a personal and practical level. Long may your pain relief give you the time to spend enjoying your life to the max. Jules

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Lovely to read Eamonn , never realised any of this what an insite !!! I now need to dust off my running shoes & help charities like this, they do an amazing job which none of us realise unless faced with !!! Keep up the good work xxx

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Since I am in the same club as yourself I found this particular essay most heartwarming, like yourself I always thought of the Hospice as some depressing bedlam type of institution with better drugs. Thanks for your insight , I am not nearly as worried now.

Your writing is so spot on, it also gives me a chance to share how I feel with my family and friends without having to let them suffer through my poor English and prose. You do a much better job then I ever could.

I wish you well sir, and a big thanks for easing the way for the rest of us.

Love and Peace

Mick

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Mick,

You do yourself a great injustice sir, you are as eloquent as any. I’m glad this has given you a sense of comfort. I can only speak for this facility, but would recommend familiarising yourself with the local hospice before the end is nigh, don’t leave it until the last minute.

Thanks for your continued support and good wishes; back at ya!

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Russell Sheen
June 27, 2014 12:50 PM

Blimey boysie what an eye opener sounds like 5 star treatment all the way, not sure about the crows tho’ never was one for religion. Really enjoyed your blog and am so glad they sorted out the pain for you. I fortunately am not at that stage yet and as it’s a different cancer don’t really know what to expect and I ain’t asking I’ll cross that bridge when I get to it. Keep on blogging. Best wishes Russell ( the I’m only 60 honest, one ) ;-)

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Hi Russ,

I know from our ‘Incurable’ club we all have different ways of dealing with the bad news. I guess when we get there we’ll find out how useful those approaches were:-)

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Wow – that was a good read – it sounded more like a holiday resort review than a write up from a patient in a hospice. I would love to know more about your chats with the Chaplin LOL – i reckon they would have a hard time :)

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Thanks Mike,

Oh you know me, I’m a big philosophical softie. “R.E.S.P.E.C.T Find out what it means to me…”

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Another great posting: I salute you, your prose, your honesty and your grace under pressure. Best wishes, Theo

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Eamonn, thank you as ever for your humour, wisdom, fluency and just plain humanity. It is always a joy to read you.But most of all I’m so pleased to hear that you’ve got the pain under control. That must make such a huge difference to your life.

I didn’t have your fear of hospices (I had an aunt who was involved with the hospice movement from its inception, so I knew what they are about). I definitely am choosing to end my life in the local hospice, if they’ll have me. In my part of the world, our Mac community nurses are now affiliated with the hospice, so I hope I’m already on the inside track.

Didn’t know either that Steve McQueen had mesothelioma. Just read his bio and am disturbed to find that towards the ernd of his life he was converted by Billy Graham. I hope that doesn’t happen to you!

Cheers, Jane (aka dyad)

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Hi Jane,

Yes, there are many things about his life post diagnosis that I wouldn’t personally consider ‘cool’. He spent half his time in Mexico in the Gerson clinic drinking coffee through his arse. A buttacino maybe?

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Another chapter down this is becoming an epic! Seriously though I’m so happy. ….. wrong word. …. That you’ve started to get the pain into something manageable. Quality writing as always.

To everyone that’s reading this please share on all your various networks! There’s some powerful and useful stuff on here for everyone who has experience of/with terminal illnesses and general life stuff too.

Abi sent this to the TV dude who was round last year keep you posted you might have to powder your nose for the glare of TV studio lights ;)

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Oh and love you ♡♡

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Hi, Well I am so glad I read your recent blog before Wednesday as that’s when I have an appointment with the doc at my local Marie Curie Hospice and it has made me feel a bit happier about going! Thanks!
I am so pleased you got the pain sorted out, that’s what (eventually) I’m looking forward to. The Pain Clinic are trying their best but at the moment the pain is winning so my GP has referred me to the local hospice which is only ten minutes away in the car. Not so sure I like it being just as close though! Lol!
May you continue to be pain free and enjoy each new day! Lots of love Annette x

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Hi Annette, Just to say my Dad had the assistance of a Marie Curie Hospice (also just down the road) and he told us it made his life worth living to have them ‘sort him out’ and we honoured his choice to be there when the time came. They offered so much in the way of supportive therapies and their smiles encompassed the whole family. Hope you feel that support on your visit next week.

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Hi Eamonn, having deteriorated quite a bit lately I had the discussion with my nurse this morning about end of life care and she is arranging a visit in a few days to the local hospice so I can make some decisions, all I know is I don’t want to spend my last days in a hospital. So your blog has been very timely, hope my hospice is as nice as yours.

All the best, love Jayne xx

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Hi Jayne,

I’m so sorry to hear things have deteriorated, I’ve been following your posts on the MacMillan forum. I know that there’s nothing I can say to make the situation any better, but if this is the time for you to make a visit to a hospice, then you can see from my post my experience at St Francis was a thousand times better than being in a hospital. I would expect that to be the case at any other hospice too, they just are set up with different purposes in mind.

My thoughts are with you and if you feel the need, you can always contact me privately anytime.

Eamonn

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Hi Eamonn, I found this a very interesting open & honest account of your stay at this lovely sounding place. The photo’s of the garden look delightfully restful. This is all the more poignant for me as I decided I do not want the natural progression into the afterlife to happen at my partners home so thought like many others the local hospice would be there for me. My local one, the Pilgrims in Canterbury has been in the news a lot lately as they, the trustees & CEO have been trying to shut it down stating a better quality of care can be given to so many more in the community, thus taking away the possibility of our ( the general public, current users & those of the future). This week it was announced that the CEO & a few trustees have resigned from their posts. So fingers crossed they will save more of the beds in the hospice & switch the care back to there rather than in the community. After all, it’s our life, our choice & sometimes I feel that is forgotten.

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Hi Cher,

It was a huge privilege to have access to such a wonderful facility and it will definitely improve my quality of life between now and the big whenever. It can’t exist without a huge amount of volunteer input and charitable donations and no doubt there are big gaps in the service provision depending on where you happen to live. It’s such as shame and I hope with the recent changes you mentioned locally, it means you will have access to the choices you would make.

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TheLondonMum
June 28, 2014 8:21 PM

I really like the fact you’ve spoken about the dreaded ‘H’. My brother in law point blank refused to go into a hospice because of the connotations, and I think if he’d done what you did he’d have appreciated it in a different light.
I’ve just started reading your blog since your win at BritMums (congrats!) and the writing is incredible! x

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jenniferhowze156
June 29, 2014 9:27 PM

So glad it was a good experience. We missed you at BritMums Live but it looks like you were well looked after.

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Really enjoyed your Hospice review! As a volunteer it’s great to hear how the team has made such a difference to someone’s life. It’s the reason we volunteer, simple as that.

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Eamonn,
Not only have I read this blog (for obvious reasons) but all of the other “Big C” ones too. It’s great to see the hospice world from the view of a patient and this and all of your other blogs have left me in hysterics! Keep up the excellent writing, I can’t wait for the next instalment!
All the best,
One of the many hospice of St Francis nurses.

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Andrew Long
July 8, 2014 10:01 PM

Hi Eamonn, stumbled on your blog via a FB link from a friend of mine who’s a HSF (note how I cleverly abbreviate to avoid the ‘H’ word!) occupational therapist. The HSF (as opposed to the HS2!) is a pretty magical place, experienced first hand via my father back in 2012. Not only a great team of professionals, but an amazing group of willing volunteers – nothing was too much trouble. Nice they also welcomed pets – a pair of pooches added a certain chaos to the otherwise ordered routine! When we were there, lack of funds meant that the day centre was in mothballs, as were a few of the rooms, but I think things are back on track now. Anyway, all praise to the HSF Heros! Take care, yourself. Cheers, Andrew

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Hi Eammon, 2yrs ago my dad was in st Francis hospice after realising he and mum could no longer manage alone together at home with just the nurses calling in daily. Immediately my dad’s medication was sorted so the pain was almost a memory and my mum could stop panicking that she had given him the correct dose, so their relationship stopped being so fraught with tension and they could actually talk about other things. Dad was there for a month of wonderful calm and peace and loved having his own room – he too had spent time on a local hospital geriatric ward… He had massages, lovely bubble filled baths to relax him, lots of laughs and personal moments with the staff and volunteers who give of themselves as well as their services and skills. It snowed whilst we were there in Feb 2012 and we all loved watching the foxes and deer outside the patio doors and my brother kept the bird feeders topped up so we could all enjoy watching the wildlife. I was expecting their 1st grandson and the staff at the hospice couldn’t have been more caring and interested and dad loved to talk to them about how excited he was for us. We as a family were treated so kindly and if we needed to ask questions someone was always available. Mum even stayed in Dad’s room for the last week he was there. The ‘Hospice’ word makes people think of somewhere quiet and subdued and where a lot of waiting goes on, SFH is such a place of positivity, action and true compassion. We were truly blessed to be able to have such a relaxed and worry free time and Dad to know that his family were as much cared for as he was meant so much to us.
On the morning after he passed away there was a volunteer visiting with his pet hawk who was showing it to all the residents and visitors. I remember having a go at holding this beautiful bird on my wrist in the lovely gardens in the cold sunshine and thinking it slightly surreal but wonderful in the circumstances….. a bit like SFH really :) I wish you all the best in your future for you and your family, kind regards Jane.

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Amy Billington
July 14, 2014 1:37 PM

I work in the dreaded ‘F’ team at the Hospice (Fundraising!) and this blog has been an amazing reminder of why we work so hard to raise funds for this fantastic Hospice. Thank you for sharing your story which explains more about Hospice care then I could ever hope to after working here for more than 7 years! I wish you all the very best for the future and will be following your blog for sure. Amy x

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I don’t believe that for a second Amy, but thanks for the positive wishes and feedback!

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Eamonn – what a brilliantly brave & ballsy blog! I was pointed in your direction by Ros Taylor (on Twitter) because I’m writing a blog about how important humour is during dark times (based on how my sense of humour kept me sane during my mum’s journey with terminal illness in 2011/2012) – and now I’ve had a nosey, I think you really should be the poster boy! What a truly magnificent and important thing you’re doing – for yourself, your family, kids and loved ones & for complete and utter strangers. The way you write is such a gift – so much honesty, humour and expression. Your words about the hospice too echo my experiences of the one my Mum was in in Welwyn G.C two years ago. And I have also co-incidentally just sent off an article for ehospice news entitled The H Word (I shall surely have to change that now!). Like you, we had SUCH fear of that word and also had no idea at first that you could just pop in on a temporary basis for pain management or symptom control. The staff there were amazing and helped us to navigate those final days with such genuine care, affection and lightness! I’ll never forget what they did for all of us. Even right after mum died, I remember saying that they had helped us to make an unbearable situation bearable…and that’s quite a thing! Voicing your fears and experiences for others to absorb, learn from and gain comfort from is such a tremendously important task…and you do it so well! Sending you and your family my thoughts, much ‘virtual’ support, and the very best wishes!…Angela

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Hi Angela,

Thank you very much for your comments and kind words. I am really pleased to hear so many positive responses to the article. I was conscious after publishing it that my drug fuelled positivity may suffer the law of unintended consequences and drag up some contrary and painful memories for other people. That may still be the case, and those people have decided the best way to handle it is to ignore it, however the number who have contacted me to let me know how much they agree with the sentiment of the article, publicly here on the comments section of the post, and privately via email has been really surprising. I think between the recent Britmums’ award and the merciless promotion of the article by Ros (a legend by any standard), this post in particular has been very successful in achieving its goal of spreading the word about the brilliant positive work that can be, and is done in hospices.

I’m also really pleased to see there are others who have been moved to write about their positive experiences of other hospices. It shows that St Francis is not an exception to a rule, and that the experience extends to the carers as well as the in/out-patients, and that it is not just the pain management, but also the end of life process. By the way, I was struggling over two titles for the article, The ‘H’ Word or The ‘H’ Bomb. I actually thought the latter was better, but my wife convinced me otherwise; you can have that one for free if you want:-)

Thank you for your support; knowing that people are enjoying my writing, especially considering the topic makes the whole thing worthwhile.

Eamonn

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