Reply to Hazel

A couple of weeks after my last blog came out a lady named Hazel posted a comment to it.

It is a long comment but I realised possibly many people would miss seeing it, which would be a shame as I believe it is written from the heart and holds numerous interesting points and parallels with Elaine’s own history. Also as I attempted to form a reply I found there was more I wanted to say; so what I’ve done is to put Hazel’s comment in full here followed by my reply to her.

I hope everyone who reads finds some common ground with one or the other of us or better still both.

Hazel: “Where to start? I was two thirds through reading “A Horse, A Husband, and Cancer” when your latest blog arrived in my inbox. I started to read it and immediately recognised myself as the friend to whom Julie had spoken about the wider distribution of Elaine’s (and your) book. I decided to pause reading the remainder of the blog when I sensed your anger and frustration at my not having read the book and surmising it was because I knew the reason was because Elaine had died and it was therefore like reading the intro and then skipping to the final chapter without reading “the bit in the middle”. I have since finished the book, and have read your blog fully and carefully, have left it for a while, and have felt sufficiently moved in so many ways that I must respond to your blog. To begin with, let’s get the context right of the conversation I had with Julie about the wider distribution of your book. She had asked whether I thought the book should be sent to someone newly diagnosed with cancer. Despite the fact I had not read the book at that time, my immediate and emphatic response was no. And now I have read the book. And I have been very moved by it in many ways. And my view of sharing the book with someone newly diagnosed remains unchanged. As I have read your work, and considered it, and the feelings communicated within, please do me the honour of taking the time to read what I have to say. To start with, I never met Elaine, nor have I met you, but I have known Julie for around 15 years, and I have known of Elaine through her, as Julie has shared with me her own sadness at Elaine’s repeated cancer diagnoses, the ups and downs of her treatments, the anecdotes that illustrated Elaine’s cracking sense of humour, and of course Elaine’s passion for horses. And I truly couldn’t summarise the book any better than Paul, the publicity officer from Forest Holme. I wholeheartedly endorse absolutely everything he has said. You should be very proud of the book, and although you say you are not the eloquent wordsmith that Elaine was, you are doing yourself an injustice. Your writing is absolutely from the heart, it has the power to move me as a reader, and the dark humour that comes from these situations shines through, as well as the obvious deep love you and Elaine had for one another. But – yes, I’m afraid there is a but… As you know from Julie, I too have had breast cancer. At the time I was diagnosed, some 20 years ago, I was not long divorced, and just 3 years into a new relationship with my now husband, Toby. I honestly believed I wouldn’t see the daffodils come out the following Spring. My cancer was very aggressive, Stage 3, it had spread to my lymph nodes, and the picture was bleak. All our hopes and dreams that were just starting to form, were dashed. And to compound things, Toby was involved in an awful, life changing, accident, just a few weeks after my diagnosis. It is perhaps a tired cliché to say that everyone’s “cancer journey” is different, but it is true. The wheel is not reinvented with every patient, so there are many parallels and overlaps, and this is what bonds those of us who have been inducted to this club, even though we did not ask or wish to join. But by the same token, as we are all flesh and blood our bodies react in different ways, as do our minds. So as I read Elaine’s story, I was vividly reminded of the brutal surgery I underwent, the drain with it’s (not very) fetching bag, the horror of coming to terms with my mutilated body, the long dark nights awake, the dark thoughts and deep holes… And then there were all those insensitive comments made by people who felt entitled to tell me that “the treatment for breast cancer was so good nowadays” and I would nod whilst screaming inside “it’s f***ing cancer, not an ingrowing toenail”. Boy, did I find out who my friends were, the house was like a florist for months, and a very dear (male) friend arrived on the doorstep one day with a very large melon in each hand. I don’t think he had really thought through the connotations of his actions, but we laughed and laughed. Like Elaine, my humour, my very good friends, some old, some new, and my parents kept me afloat amidst the dark times. As I read on, I was then reminded of the horror of the cool cap – gosh I really had forgotten that little gem. And what a waste of time that turned out to be. But hey, once I’d got over the absolute devastation of losing my hair, I dug deep and learned to see the benefits of not having bad hair days for 18 months. Oh yes, I remember how the nurse told me, as I made my way to the loo with the drip of docetaxel, to be careful, as I wouldn’t want to get that on my clothes as it would stain. Hello, I thought, it’s not my trousers I’m worried about or this blouse that I only ever wear for chemo and will never wear again, but you’re putting that stuff straight into my veins! More unwelcome reminders of the collapsed veins (still a problem for a simple blood test), the marking appointment for the radiotherapy – yes, I also have those little tattoos – the feeling of vulnerability whilst waiting in the hospital in that flimsy gown with all those other folks in their gowns as we waited for our turn and wondered silently but didn’t really want to know too much about what their cancer was… And who indeed ever thought that counselling at the h-o-s-p-i-c-e was a good idea? I never asked what the chances of recurrence were, I didn’t want to be told as I knew I’d focus on the negative, and saw my survival as an act of positive thinking and absolute reliance on my faith in the team of people around me. I spent the first 10 years in survival mode, and was undergoing treatments of various sorts for the whole time. Then I was cast loose from the medical world, on my own with no safety net, and spent quite a lot of the next 10 years looking over my shoulder, expecting, waiting for something, being reminded all the time of other people, Elaine included, who weren’t as fortunate as me in not having a recurrence or second diagnosis of any sort in all that time. It’s been a third of my life now and to this day no one has ever told me I am in remission, or have the all clear, or any these commonplace phrases that are bandied about, and I had to work out my own way to get back to normal, whatever that was. Like you, Mark, I’m still getting on with my “bit in the middle” although it’s taken an awful long time for me to come to terms with the dark thoughts that maybe I had cancer as some sort of punishment for something wicked I had done in a previous life – I just hope I enjoyed whatever it was… They say life begins at 40. It was certainly a very different life for me and a little black dog has accompanied me more than I would have liked. The deep hole into which I was plunged that day I was told I had cancer has been a hell of a climb and it truly changed me as a person. But I have laughed and loved and lost along the way. I have had some proper bugger it moments, like the day I chose a sports car over a nice sensible hatchback, and the day I married Toby in a fabulous red dress that made me feel a million dollars. There have been so many good things that have happened, including lots of daffodils, whilst I have been keeping a watching brief, and not a few losses too, as friends not as fortunate as me have died. But – again that word – had I not had cancer, I wouldn’t have met some truly amazing people, wouldn’t have made some very special friends, and whilst I wouldn’t have chosen to have had cancer, I see them all as a beautiful compensation for a truly horrible life experience. For me, reading A Horse, A Husband, And Cancer was all that Paul and Dave said. But it was also a very unwelcome reminder of the darkest of times in my own life. You did the whole cancer journey with Elaine. But you will know yourself that the vast knowledge of information you gained over 30 years was passed to you both on a need to know basis, a drip, drip of information. Had I been told on day one, or even within the first year, some of the things I learned as my own personal story unfolded, I would have been so very shocked, if it could have been possible to be any more shocked than that day I was told I had cancer. I simply could not have taken it on board, I wouldn’t have wanted to know, would have questioned how I could deal with it, and some of it would have proved to have been irrelevant in the end. For these reasons, I remain of the view that I would not recommend a newly diagnosed person to read your book. I do however, feel that it would be an invaluable insight for a spouse, loved one, friend, sibling, anyone who wants to try to understand the horrors of a cancer diagnosis. And also to see that a life can be lived, whilst walking hand in hand with cancer, that it’s not curtains right away, that there is still a huge bit in the middle to be embraced. It’s been an emotional time, Mark. -Hazel”

Hello Hazel, firstly my apologies for not replying sooner to your heartfelt and so beautifully constructed comment to ‘The Bit in the Middle’.

 I haven’t been 100% these last couple of weeks and only recently came across the email telling me it had been posted; and of course I am willing to read whatever you have written. Hopefully I’m neither foolish enough nor naïve enough to assume that everyone is always going to agree with my opinions or points of view.

Neither am I angry or frustrated but, I am a bit sad to think that Elaine’s book may become somewhat side- lined as it incorporates her death when I fully believe that it has so much to offer to all readers whatever their circumstances may be.

As I stated in the last blog, Horse Husband and Cancer is a book primarily about Elaine’s survival and the way that she accomplished this over almost three decades despite the odds against her. This to me is the whole core of the work and the message of optimism, when facing those odds, that I hope it puts across.

Hazel, reading your history (I won’t say ‘cancer history’) I see many parallels with that of my late wife.

The hopes and dreams dashed or at the least sacrificed on the altar of necessity. The ill thought out comments from friends, who don’t know what else to say or exactly how to react, and the meaningless prattling of others and givers- of-good-advice at any one time. Also those dark thoughts that always wake you in the early hours, setting your mind spinning, and preventing a return to the blessed oblivion of sleep.

And the constant fear of possible recurrence, whether you ask about it or not.

As far as I remember (Julie may recollect different) Elaine was never told that she was in remission at any given time. She/we came to accept that she either had active cancer or dormant cancer; black or white really, though often grey became the ‘new white’.

She underwent genetic testing via Southampton Hospital early this century, and it was they who confirmed that it was something she was born with; no fault of her own. They told us her lifestyle was helping to keep the cancer at bay and also that her mental attitude and outlook counted in her favour a great deal too.

I hope her writing conveys fully to the reader just how much her strength of spirit and mental defiance helped her to carry on living notwithstanding the confirmation of her fate, and the fear that brought with it.

She forced herself to take an active interest in her illness and the multitudes of treatments for it. She became fully involved, and was never prepared to just be ushered along, side-lined or left without explanation by the various medical teams who came and went throughout it all. As much as was possible she ‘steered the bus’ and I have no doubts that this too aided greatly in her staying alive for so long.

Hiding away would have just meant the cancer hiding too, and growing in the dark. I hope all this comes across to her readers, as do her fears and love for life.

There is defiance and fire in your words too Hazel. I think that you and my late wife have much more than just cancer in common. She would have loved your ‘two fingers’ to fate in that choice of red wedding dress and the sports car.

I have tried, since reading your comment, to imagine how Elaine would have reacted to the book had she not written it but been given a copy as a new cancer patient herself. It’s a difficult one to gauge, but I think she would have been shocked to think that this may be the road she too was heading down and may well have stopped reading, and left it for a time, but I know she would have ultimately taken it up again and read on.

She would have recognised that it’s telling one persons’ journey and how they dealt with that journey as it unfolded for them. It doesn’t follow that everyone on similar journeys will have the same experiences along the way or even encounter the same ending but, I think she would have found real value to her situation within the pages.

Elaine believed in preparation, and in being forewarned and forearmed as much as possible. We always asked for the truth, no matter how bitter, but I have to acknowledge that this is not the wish for everyone (my own sister included) and that each must make their own choice.

You mention your thoughts about your situation possibly being due to transgressions in a previous life; that made me think. Elaine did believe that she had lived before and that we two had been together at some other time. She did wonder out loud sometimes if what was happening was indeed a punishment, an ordeal if you like, for former wrongdoings.

Maybe that’s the case and if it was well debt re-paid, but if so what’s the point in our fighting back or holding on unless the lesson is within the struggle and not the outcome.

Whatever it is, one way or another, as I sit here now I honestly don’t give a damn; I love her unconditionally and wish to God that none of this hell had ever occurred for us.

Today cancer can no longer hide in the shadows as well as it did when Elaine was first diagnosed. A victim of its own success, its being gradually dragged out into the light. With one in two people now expected to become sufferers the battle to defeat it is now happening in the open and not in the trenches.

I reckon it will be defeated, bit by bit in its various guises, but people will still get ill and afraid.

This is where I think Horse Husband & Cancer has a place. As I said in ‘The Bit in the Middle’ death finds us all but we don’t have to throw up our hands, sit down, and wait.

 I believe that Elaine’s story can inspire others to carry on living; showing that it is okay to do so, to resist, push back against and question that which was once seen as unstoppable.

My personal belief is that the truth is out there and better if known. It’s how I would play it for myself. I have come to believe also, from my experiences alongside Elaine, that most if not all, of human beings possess a far greater strength within themselves than they often are aware of and, that the most adverse of circumstances bring forth those strengths when they are most needed for that individual, and those around them.

I think you are the living proof of this Hazel.

We have affinity on more points than we don’t but on those, we are free to differ. Same destination maybe, just a different route.

My thanks again for your time and words and also your kind comments on my writing abilities (I still think Elaine has more than an occasional hand in it all!!)…Mark.

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