After speaking to Alan and Larry it was suggested that I should let the community know about the book I have just published. My motivation for writing this book was to help shine a light for those following a similar path, and at the same time release many of my own demons. I would like to be able to say that I can raise some money for Macmillan and the OPA, but I will have to see how sales progress over time.
I had the Ivor Lewis operation back in April 2008, it has been a long and difficult journey but I have managed to achieve my ‘new normal’ and more importantly a good quality of life. There were many times along this road that I wondered if I would ever get to where I am now. I would say to all going through this hell that there can be better times ahead. Below is one of my prose featured in the book-
~The Demon~
I stand on the mighty plains before the demon’s lair and shout come out and fight, but the plain stays silent, for the demon has passed within me and is coursing through my veins,
I say how can I fight the thing I cannot see, who will be my champion now, with heavy heart I lay down my sword.
I look toward the scalpel and the skilful hand of my surgeon to cut away the demon’s lair from deep within.
I look towards the alchemists, not for gold but for potions powerful and rare to hunt the demon down, and should my body grow weak of potion so strong I look to kindred spirit to rally and spur me on.
If I should win the fight I can rejoice in victory, but should I lose this most terrible fight I know something this most insidious of demon cannot know, as for me to lose will forge a seal upon the warrant to the demon’s own demise.
I have read some of your posts and see where you are comming from, the cancer was not the worst thing to happen to me either, although for me it is stiil pritty massive as it curtailed many of my activities which frustrated the hell out of me.
Thanks for your comment over the Demon, I have not recieved a comment such as yours, which has made me think. My writing is meant to be thought provoking so I can now view the peice from another perspective.
Hi Steve, I'm not trying to belittle cancer, it is massive operation however, I've had bigger. For me, it has always been about pushing forward no matter what. I kept my activities to a minimum for the first month after my op to give things time to settle and then went back to normal activities. It was and still is a bit painful on my right side as I use my upper body to get around.
Regarding "The Demon" sorry if I sound a bit harsh. I've read it again and still think it very negative. I have always believed in the Caterpillar and Butterfly, Caterpillars always see death and Butterflies always see life. The Demon was written by a caterpillar.
You are not being harsh at all, this is an open forum and you are intitled to your opinion. Perhaps this one will be more to you taste?
~The Red Admiral~
When you were a caterpillar you sought the sanctuary of my garden shed so you could flourish, but the shed has become no more than a prison of your own making. Now trapped between the wire screen and the slightly opaque glass from the dust and cobwebs that bars your freedom as you frantically beat your colourful wings and dream of life beyond the obscured outlook on your new world. A world where the sun is shining and the promise of a gentle breeze to lift you high awaits.
I work my hand behind the screen and await your proximity, then gently clip your wings between my fingers. I then carry you out into your new world and set you free, never before, have I seen a butterfly sore so far and high so quickly. In that moment I share your sense of freedom, not in the instant way you have but as a developing and enduring freedom, a freedom that shall carry me along as does the wind for you, to better times ahead.
Good luck with the book & everything else. I'm still coming to terms with my Ivor Lewis done in Feb 2009. I like "The Demon" & would like to add the importance of your effort to to achieve my ‘new normal’ . It sounds so obvious that one will never be "normal" again but you have to come to terms with this. In the early months following my op I really wondered if the cure was worse than the disease but if you adjust and accept you will find that there is still a lot left to life.
The thing I have found is when you think you have reached your new normal you can be pleasantly surprised when you acheive even more. I am a work in progress and providing the cancer stays away I am winning. As time goes by we sometimes forget how bad things were in the begining, but if you try to remember how you were at the start of your journey to where you are now, you will recognize just how far you have reallycome.
I have just placed an order for your book. Good luck with it. I had an Ivor Lewis op in May 2011 and have had a relatively short journey but feels very up and down with many bumps along the way. It is very hard to prepare yourself for the consequences of such an op and although sharing others experiences can be very useful it does seen despite common issues we all react differently both physically and emotionally. Looking forward to your book.
You are quite right, it is good to share our experiences, good and bad. Each of us has our own unique path which shares much in common with the journey of others.
Thank you for ordering my book, I hope you can find some meaning in my words that shall shine a little light on your own difficult journey.
Very best of luck!! Well Done!! I have had an ambition since I was 18 or so to write a book one day! Started one about 12 years ago, fiction.
Signed up 3 months ago with a writer's bureau help how to write a book. I have not started on it yet, need to do lots of reading and write short stories to begin with. Thinking if and when I do write that book it would be easier and more interesting to write about my life story so far including the cancer journey.
I have found writing to be very therapeutic in my recovery; I believe there is a book in all of us and that our dreams do not forsake us, only we them. If you write from the heart you won’t go far wrong. This illness we share is big, but it should not be so big it shrouds everything else in blackness.
Wow Steve wish I had your talent of brief words speak volumes! I too have found writing therapeutic in my recovery, don't know how my computer has kept up! (Always done it writing or the old type writer)
You don't realise you have given me the biggest lift to write my book!
From the heart!! Not all about this illness, all the mountains I have climbed, beaten the odd's! This has been the hardest! Got a book to write!! ha ha
To write we must first believe in our words, and from that point onwards, those words will find a connection with others. We often stand in the shadow of our worst critic, that critic of course being ourselves.
I see you are three years post op, this is a good place to be. I hope you are continuing to do do well and you are able to enjoy the last rays of good wether along the South Coast.
Hi Steve, your book arrived earlier this week. It is not a book one can say I 'enjoyed' reading, for obvious reasons. But I did feel uplifited and much admire the manner in which you managed to write it. I felt very much you were 'speaking to me', even though our journeys are at very different stages. I will go over various sections again to get another 'uplift'. "The Robin" touched me. Although this 'beast' is all emcompassing, I still have a lookout for the vulnerable and "The Robin" goes to show why.
You have a special writing skill Steve and I'm pleased for you and us that you got your words published - well done. I do hope many people will read your story & feelings in this compact book and Macmillan can benefit.
Again, well done Steve, and I wish you all the very best on your on-going path to a new normal.
Your comments are very heart warming. I did not want this book to be too long or all about me, although I had to use my own story. If you are finding things in the book that speak to you then my writing has acheived its aims.
I do hope after your treatment plan is over, quality and enjoyment is brought back into your life.
Hi Steve, Congratulations on getting your book published. I have just ordered your book and look forward to reading it. I am 5 months post op and it has been a difficult journey so far, but I feel now that I am coming to the end of that very dark and sometimes lonely tunnel.
I have found especially in the early months that progress can be steady, reach a plateau, or even go backwards. The secret to this dilemma is to accept progress can move in different directions and to just be kind to yourself by not letting frustration get the better of you. Many of us, will at times struggle with the seemingly insurmountable dark moments that infultrate our days and even longer nights; the truth is you are not alone in experiencing these natural human feelings. After all we are mourning the loss of our wellbeing, and the simple pleasures in life we took for granted post diagnosis. All this loss of utility will take real effort and determination to regain.
Not too bad, but still feel sick with most food. Worst thing is backache I've had since hospital in September. Off to see surgeon next week. Bought your book for the Kindle last night & made a start on it. Good work.
That sickness you are getting will ease up over time. Get the wife to rub your back with deep heat or something like it 2 or 3 times a day and keep your back warm. These persistant pains can pull you down, If sleeping is a problem get some slow release pain killers to take at night.
Just finished reading it at the hospital this morning whilst waiting for a CT scan. You don't hold back & I admire you for that. Some very personal experiences shared & some good solid thoughts on some emotive issues. Well written too.
Thank you for your feedback, I am also keeping my fingers crossed over your CAT scan results. I hope you do not have to wait long for some good news, let us know how you get on.
Autumn is one of my favorate seasons for the colours upon the ground and in the sky, below is something I wrote some time ago-
~Mystical day~
The sun and moon have performed their celestial dance which project a mystical feel as they compete for our daylight hours, the brighter sun that lights the forest tree line of shimmering gold now contrast the blue sky and half pale moon to enhance my visual delight, while the burning leaves from a smoldering bonfire excite my sense of smell, the smoke of which wafts by to form a haze that shroud like a whispering vale upon the nearby landscape.
I was at the hospital yesterday having my frozen shoulder looked at after having an MRI done. They have picked up a cyst in the middle of the bone, the doctor says he doesn't think it is anything but a cyst or a bone island?!?! They will know more in a couple of weeks once a full report has been made.....more worry. The medical staff were right when they said that I would feel like I am going 2 steps forward and 3 steps back sometimes!!!!
I also had my 3rd feeding tube fitted. Hopefully this one won't kink or knot!!!
It is always a worry when we lose so much weight, especially if what we do manage to eat isn’t doing its job. You should have access to a dietician so seek some advice from them. The sooner you can lose the feeding tube the better and over time you may find you range and intake of food increases. You are still early days as it was over two years before I could tolerate milk for example. I found M&S ready meals to be a godsend because from the moment I thought I fancied something to eat to it being in my mouth was just a few minutes, if I missed the moment I just did not eat anything. I filled up the cupboards with all sorts of junk snacks and kid’s sweets, all the things we would, under normal circumstance avoid, but these are not normal circumstances and you must get down whatever you can to maintain your weight in whatever way that works for you.
Any sort of pain especially in the early months can cause you to be hyper vigilant, this is normal, after all your body has every right to protest after what it has been through. The MRI is ideal for spotting problems with your shoulder, it is unlikely to be anything sinister so try to put it to the back of your mind until you know what you are dealing with, you have more important issues to worry about right now such as your weight so concentrate all your efforts there.
Having setbacks, unfortunately are the nature of the beast, time is your best friend as the greater the distance from the op the easier things should become, and I am sure there are many others here who would agree with that statement. Remember recovery is not a race to see who gets better sooner, so just listen to what your body is telling you and you won’t go too far wrong. I did an engine change on my wife’s car six months after the op and what with working full time I did myself no favours at all.
Frustration over your ability can at times create more harm than good!
I am hoping not to have to rely on the feeding tube for too long. My dietician has said that although I am eating all the right things (not what I would have called hem. In fact most of the foodstuffs I have in the house at the moment have been banned from my cupboards for years!!!!) I'm not able to eat enough to sustain me as my body is still trying to repair itself from the op and the radiotherapy. The dietician has said that they want to feed me for a good few months so I'll go along with them, at least I can still eat 'normal' food as well....that pleasure has not been took off me thank goodness.
I fully understand what you say about being frustrated about my ability to do things....I felt good yesterday and did too much, today I have fely awful all day with sickness and pain! Oh well here's to a better day tomorrow.
I have seen the darkness of this disease. I have seen how it can rob one of it's light from within. When this disease takes the control away, and your future has become limitless. It can rob you of your foundation, your core. I am not sure why or how. Why some and not others. How does it rob someone who's foundation at one time was made up of determination, dedication & dreams to a feeling of hopelessness? How does it rob someone of who they once were? We all may want to romanticize this story, but the truth is... some are robbed of control and darkeness sets in.
I am sad to know you are suffering in darkness, it is true this disease can rob us of the many things you speak of. The forum may be able to help you more if you would tell us a little more about your circumstances, it does not have to be anything personal and only information you are comfortable to share. None of us here can offer anything other than understanding and advice based on our own circumstances. We all have our seperate emotional journeys but within those journeys we do share a lot in common.
I am a witness of how this disease robs one of that light that shines from within. My husband has EC mets. It is very difficulty to see someone who began this journey with such a positive spirit to declining with feelings of hopelessness. I know everyone copes differently, but I often wonder if there is a common thread between those who look upon their mortality without fear when faced with hearing there is no cure. How do some cope with it graciously, and others with such denial, or pain of depression? What is the turning point? I know it is complicated and different for everyone, but the phrase that cancer cannot rob you of your mind, spirit & soul I have found untrue. I once believed it, as well...
From my perspective I would rather have this illness than watch someone I loved go through it because even if you are doing all you can to help it may never seem to be enough, so I do understand what a nightmare this is for you. We all must die at some point but this illness is cruel and mindless. I do not fear death, what I do fear is dying in pain which is unmanaged. I do not know what the future holds for me; yes I am beating the odds at the moment so I am lucky in that respect. Although I live with discomfort every day of my life it is a price worth paying because I still have quality, without quality I would rather not be here. If your husband still has quality in his life he is still winning, therefore, for either of you to be so mournful about what the future may hold is putting in jeopardy any chance of happiness you may find now, which will shroud your lives with blackness and will solve nothing.
There are no valid or definitive answers to the questions you pose, except the ones you can rationalize in your own mind. I believe there is no such place as hell except the living hell we make for ourselves. I have been around this illness for long enough now to know that any prognosis is nothing more than an educated guess and we will only go when our time is up. Just because you have been told there is no cure it does not mean you have to surrender hope on the people you love. You have each other and together you will find the strength to see this awful thing through.
You must seek all the help you can get from family and friends. Do not accept no for an answer from the medical profession as your husband’s comfort and welfare along with your own peace of mind is all that matters right now, so don’t be afraid to ask for the help you both need.
I wish I could take away your pain, but all I can offer you is words,
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