Well I wasn’t expecting to wake up to this one …

I have led from you to me for the last 10 years and with never a dull day. Growing as an entrepreneur having left the security of the corporate world was both exciting and scary at the same time and the ten years we have been trading has also seen the World face the largest recession since records began. Challenging times but also ones that saw us learn every day and move from strength to strength. Things were uncertain but we planned and it was under our control what we did and how we did it.

Our business is based on a belief in making beautiful gift books and journals that enrich lives by creating cherished moments and capturing special memories.

Our business is about stories … life is about stories. We share stories with others every day of our lives, but they seem to become even more poignant when life suddenly takes a different path.

I awoke back in February this year with some symptoms that made me visit my Doctor. “You are fine” they told me, these things happen sometimes and sent me on my way. Well I was not convinced I was fine, so I went back. “We’ll do some blood tests then …” and two weeks later after calling and calling for the results I was told the Doctor needed to see me urgently at 9am the day after tomorrow … a long 36 hours.

As I sat in his chair on that morning, I was expecting some prescription to take me on my way before a key presentation I had to make that morning at 10am.

“I am sorry I convinced you everything was going to be OK”, the Doctor said. “You have cancer.”

I remember sitting in his surgery for the next 25 minutes, however I do not remember anything he said. The cancer word is a strange word and one, that for me, took me into a new world, a new place.  Life changed. Straight away. Never to be the same again.

I really wasn’t expecting to wake up to that one.

I did the presentation at 10. I am not really sure how I did it as I do remember walking out of the doctor’s room and sitting on my own in the corridor wondering what on earth I was going to do and cope.

Life continued on that day as I saw all those faces looking at me, all with their own stories to tell and all with no awareness of what I had just been told. Why would they know? Why should they care? Everyone’s life has their own challenges … but this was the first one I had had where I did not know what to do.

We like to believe we have total control over what lies before us, and, I believe we do maintain a huge amount of control in the direction and trajectory of our lives. But we don’t control all of it and it has become clear to me already that it is helpful to remember this during the hard times.

I suddenly noticed this uncertainty in my life because it had been put in front of me in flashing neon lights, but that doesn’t mean to say that uncertainty wasn’t there before. Understanding that we can’t control the uncertain aspects of our life is also part of understanding that uncertainty is not necessarily a sign that things are going wrong. And this is starting to help me being less anxious about the unknown.

The problem for me is that when I now wake in the night, my sweet dreams have been replaced with the story that I have cancer.

The problem for me is that I used to wake up in the mornings and clean my teeth. Now my teeth cleaning is interrupted with my mind reminding me that I have cancer.

The problem for me is that when I used to listen to you, I listened really well … but my listening is now interrupted by that annoying cancer word.

The problem is, it gets in the way … in the way of everything. Annoying. Very annoying.

I am certainly not after your sympathy here. I am starting to manage these aspects better. And I wanted to try to put in writing the experience I am going through …

I thought the medical aspects would be clear. To see an expert who understands these things and who would advise the best course of action … but that has not been the case.

I have been presented with a menu of options all with different side effects, with different issues, with different success rates … and with different advice depending on who I speak to. I wasn’t expecting that one either …

But overall the medical and physical side is something I have now made a decision on and I am heading towards a major operation shortly. That helps. I have removed some uncertainty.

The psychological side is different.

Did I mention that that ‘c’ word had just popped into my head?

It is a strange word – it has different meanings for many of us – but is a word that is definitely negative for most.

I have a 9 year old daughter and, whilst she knows I am not well and am having a major operation, I have never used the ‘c’ word with her. It didn’t feel right for me to do that for her.

But young life like hers is what keeps you focussed, keeps you wanting to recover, keeps you wanting to stay alive.

The fact that the ‘c’ word raises its head in the middle of the night to scare me that I might not be here to see my daughter next week makes you more determined to beat this illness, but the uncertainty still puts a cloud over everything you do.

“Make the most of every moment, life is too short.” I hear that a lot at the moment. I have always heard it to be honest, but things have changed for me. It has become even more pertinent. The uncertainty means I have to make things certain by planning to do the things I love and to be with the people that I love. To also not do the things I don’t want to do.

I understand about change, I have worked for much of my career helping people manage change … and this is a truly life changing experience.

Suddenly I felt I needed to complete my Dear Dad journal for my daughter. I run the company – I can’t be caught short without completing my own version! In fact I also need to complete the Dear Friend one for lots of people in my life … and what about the Dear Brother & Sister ones too.

Why? Because my mind was telling me that I might not be here next week …

Which is crazy isn’t it?

Or is it? The uncertainty raises its head again. OK, my uncertainty hit me when I went to see the Doctor, but uncertainty can hit us all in many ways.

The proverbial bus … losing our job … or worst still a loved one … an illness striking anyone we know … an injury … a fire.

Big things can happen that are out of our control at anytime and we need to accept that. We need to spend our lives, not waiting for bad things to happen of course, but in a way that we learn to accept the things that will hit us from time to time.

Yes – we need to ‘make the most of every moment’ in the best way we can in the modern world. We need to create more stories. We need to share our stories. We need to cherish the time we spend with our friends and family.

That made me proud about what our business stands for …

I receive so many comments from our customers about our journals and how, when completed, they are one of the most treasured things they have. They get even more emotional when they share their own tales of losing someone and how they can still feel close to them through their own stories and hand-writing.

So I need to go from strength to strength with my own recovery and I need to make sure our business also goes from strength to strength.

I enjoy what we do, what we offer – and this ‘blip’ in my life has not made me want to ‘retire’ or do something else, but it has stopped me from wanting to do the things that add no value. No wasting time on dull, boring or pointless activity. I have definitely become more focussed … more impatient too. But also I want to have more fun, to smile more, to laugh more.

I am probably different to know right now, probably difficult too, so I hope you can accept the changes you may see as I learn how to deal with this uncertainty.

I wanted to share some of my story and I hope it might help you too.

I have learnt hugely in the last 6 months and, this won’t surprise those of you who know me, but I want to help others learn too!

I feel three books coming on … well maybe not books, but certainly blogs … and these are based around.

  1. The NHS and the way they have communicated with me through this ordeal. The treatment and professionalism has been amazing, but there has been so much I believe they could learn to improve their communication style and approach. Some of the latter has been quite appalling.
  2. Things to consider when communicating with someone who is diagnosed with cancer. Everyone is different and there is no prescribed approach, but I have experienced everything from the ‘head in the sand’ ignore it approach, through people telling me I will be OK, to others who want to know every bit of detail. This has been hard for me, but I bet it is even harder for others communicating with me. My brief summary is never avoid the elephant in the room, ask questions and listen well – and a big thank you to my friends who have already done this.
  3. How to use this experience to springboard onto making life better. Uncertainty may arise at anytime for us all so we really need to live our lives in a way that recognises this and leaves us with no regrets. I know that, even when I beat this horrible disease, the shadow will remain lurking near me. My regular check-ups may indicate it has come back. I was immortal and this has now made me realise I may not be. I am coming to terms with how life will be different from now on – and I need to make sure that life is also even better from now on.

So watch this space for more of my ramblings … and in the meantime, thanks for reading … and I would love to hear from you if you have experienced anything similar. Please do share and help me and others learn too.

It is good to talk, to listen, to truly communicate well. Together we can help each other through the uncertainties of life.

Neil

 

11 Responses to “Well I wasn’t expecting to wake up to this one …”

  1. Sophie langley says:

    The uncertainties we definitely can’t control. The certainty is that you will have a lot of people standing beside you whilst you fight this. And the I truly believe that the elephant in the room helps no-one. You have a kind soul and a wise mind. Everybody fights their own battles at some point in life and it’s talking about it that teaches others and creates the ability to process it in ourselves. It’s your very personal journey but there are many of us that are happy to walk alongside it with you. Be strong, be vulnerable my friend, I am sending all of my love x

  2. Neil Harper says:

    Neil

    Wow! Very moving and eloquent.

    We are thinking of you !
    All the best.
    Neil and Sally

  3. Tim Cardinal says:

    Neil,

    Very moving Neil, hadn’t realised. So true we all need to share our stories, thanks for sharing yours – we’re all thinking of you.

    Take care and happy to chat anytime!

    Tim

  4. Jackie Allan says:

    Sorry to hear of your ‘blip’. Very true to live your life to the full as you never know what is round the corner. Thinking of you and your family xxxxx

  5. Andrew Claridge says:

    Neil,

    An honest and moving piece, will strike a chord with many.

    Thinking of you & the family.

    All the best

    Andrew

  6. Pete says:

    Something compelled me to read this, I’m very pleased I did and I was very moved by the eloquence and detail of what was written. Thank you for sharing this and for letting us know the effect this has had and will continue to have. It’s important for us all to consider this and consider the lives of those around us. I wish you all the very best for a successful outcome.

  7. Lisa Smith says:

    I’m so sorry to hear your news Neil, as it’s always a shock to learn of anyone around us being diagnosed with this horrible disease. You are a true inspiration to many and our thoughts are with you, and your family at this difficult time. Sincere heartfelt wishes for a speedy recovery The Smith Family x

  8. Tina Fegent says:

    Take care Neil and thanks for sharing your journey. Thinking of you and the family. x

  9. Paul Taylor says:

    Sorry to hear all of this Neil.
    2 things I have to offer…
    (i) Since we worked together in the old days, I have qualified as a Hypnotherapist and Psychotherapist. I can’t cure it, but I can bring help for you to understand it. No cost.
    (ii) Mindfulness. Embrace it, you don’t need to go the “Full Buddhist” but I am also a teacher of Mindfulness, so can take you through the basics of how meditation can bring it all into perspective for you. No Cost. – Mindfulness you can do without me, I would really recommend it for the pickle you are currently in.

  10. Geri Schuch says:

    Hi Neil,
    So very sorry to hear your news and also sorry it has taken me a while to write to you.
    I read your blog and I thought it was a very powerful piece to expose your feelings like that. For those of us who like to think that we are in control of our lives, serious illness is one of the things that we dread because we know it has the capacity to change the direction of our lives, and not necessarily in a direction we would choose.
    I think it is made worse when you have looked after yourself and keep quite fit. It’s a bit of a rum deal.
    I hope your op and treatment go better than expected and that very soon you can put this chapter of your life behind you. And you know that you, Helen and Mila (and puppy) are always welcome to pop over to Normandy for a break or recovery or whatever! The house is now finished so I no longer ask F&F to pick up a paintbrush or hammer and drill! 🙂
    Take great care Neil
    Geri xxxx

  11. Chris Bayes says:

    Hi Neil

    Long time, no speak. You may recall I had many dealings with the ‘c’ word with my husband, John, when I was at Orange. Your experience with the NHS certainly struck a chord – I am sure they will look after you extremely well but it sounds like there is still a myriad of communication, confusion and choice that you as the individual have to find your way through.

    Wishing you all the very best – your positivity and courage will be your strength through this.

    Chris B x