Why me?

Evening all – I thought it was about time I gave you an update on the last few days…

In truth, they have had their ups and downs. I have been struggling to adapt to my lack of vision – becoming increasingly frustrated with my general loss of function and coordination. I seem to only be able to operate at half the pace I used to. Meanwhile, general household life continues around me at its usual tempo – baby, meals, tidying, shopping, etc – leaving me feeling at best like a spectator, and at worst just in the way.

Each day I wake up with a list of things I’d like to achieve – and in most cases achieve very few of them. My reduced dose of steroids lasted all of a day – Saturday morning was spent lying in bed with a headache. So I went back up to a dose midway between the new and previous dose, which seems to be keeping things stable for now, and is at least a reduction of some kind.

The lowest point came Friday afternoon, as I walked down our street, and straight into the wing mirror of a parked car – I felt like an idiot. So I continued walking along, smouldering to myself as I contemplated what had just happened.

A few paces later, I walked straight into the wing mirror of a parked van. Needless to say this second incident did nothing to alleviate the frustration and embarrassment of the first.

It didn’t hurt that much (physically at least), but it hurt my pride. For someone who generally considers themselves a pretty coordinated person – enjoying the odd turn on a mountain bike or skateboard – the sudden inability to navigate a quiet residential street without walking into successive parked vehicles is quite frustrating.

The worst part of it was (and I’m ashamed to admit this, but this blog is supposed to be all about being honest) is that I found myself asking Sally why she didn’t see I was about to walk into the van. Which is obviously ridiculous – if I haven’t yet figured out what is in my vision and what isn’t, then how on earth is Sally supposed to know!? I knew it was wrong straight away, and apologised immediately – but still felt bad that I had let my frustration get to that point.

So undoubtedly the last few days or so have had their moments. However, I woke up this morning determined to try my level best not to let this get me down or feel sorry for myself. Things could be worse – I still have most of my vision, and I still have all my other senses and faculties unaffected (at least no more than normal!). I am endeavouring to manage my situation, and when it does go wrong, laugh instead of getting angry. As I discussed in my very first post, keeping a positive attitude is only going to do me good in this fight – getting down and negative will just compound my problems.

Which brings me onto something I have been wanting to discuss on the blog for a while – maintaining a positive outlook. But first of all, I want to share a picture with you all, taken from the cover of the Royal Marsden ‘Progress’ magazine. Now for the celebrity / royal fanatics out there, the picture does contain Kate Middleton (or whatever her married name is now), but I want you to look at the other person in the picture – yes, sometimes there are other people in pictures of her too – and no, I don’t mean William, or even Pippa Middleton…

I first saw this picture about six weeks ago – I was in the CT scan waiting room of the Royal Marsden, waiting to have a scan of my head to find out if there was any cancer in there, and therefore whether or not I could go on the clinical trial previously mentioned. I knew that the next day I’d be back in the hospital, either being told I had the opportunity to receive what could be the next big thing in melanoma treatment – or that no, I wasn’t allowed to have that, and by the way there is cancer in your brain (we all know what happened by now).

So it’s fair to say there was a lot riding on this scan, and I felt suitably tense. As I sat there nervously waiting to be called, my eyes fell upon the picture on the front of this magazine – and suddenly my own problems didn’t feel so important any more.

I was looking at a picture of a child… a child that didn’t look a great deal older than Saskia… a child with cancer…

I’ll be honest, the picture made me cry, due to a whole range of emotions. I felt sadness, as I pictured that child being Saskia, reaching out to me, and imagined how terrible it must be as a parent to see your child, the most precious thing in your life, ill with cancer. I felt anger and despair, that anyone gets cancer, but especially a child.

Most of all, looking at this picture put my own situation in perspective – I resolved that I was not going to feel sorry for myself, or indulge in self-pity. Having cancer is undeniably scary, and the treatments themselves are often scary – but I thought if that little child has to go through this ordeal, then why shouldn’t I have to?

It’s a bit of a cliche, but unfortunately cancer doesn’t pick ‘good’ or ‘bad’ people, or just land on people who ‘deserve it’. Twice recently I have heard cancer patients (one old, one young) asked if they wondered “why me?”. In both cases the response was the same – “why not me?”. As much as we’d all like to construct a rational case as to why some people get cancer, you just can’t. Cancer isn’t rational, or logical – it just happens.

The picture above also brought home to me that in actual fact I have a lot to be thankful for. Sure, I don’t want cancer (wish I could find the receipt), and I’m statistically unlucky to get it at my age – but still, I could have been statistically unluckier (i.e. younger). I have had some amazing opportunities in life – a fantastic family; great friends; an amazing wife and wedding day; and now the most magic thing of all, Saskia.

Sally and I have been so lucky with our little girl. We were blessed to discover we were going to be parents only a month or so after making the decision to ‘go for it’ (at least there is one part of me that’s healthy!), and were fortunate enough to have a relatively uncomplicated pregnancy. It’s not lost on me that we were very lucky – and given my current circumstances, I am immensely grateful for that.

Now don’t get me wrong – I am aware this might be beginning to read a bit like a “it’s all ok, I’m satisfied with what I’ve achieved in life, I’m off out of here” post. Which couldn’t be further from the truth.

What I am trying to say is that yes, having cancer is crap. But it is so important to remember the things in life that you have to be grateful for – because they are out there. Each of these positive things is another reason to fight, and not to accept this disease – and fighting with your focus on the positive things in life has, to my mind at least, got to be the best way to fight.

Over the last couple of months I’ve had a lot of wonderful feedback, containing words like ‘brave’ and ‘inspiration’ – which has been so very moving and motivational, and has helped me stay positive. However I’ve come across many other people in similar situations (in hospitals, via other blogs, on tv, etc) to whom those words are equally applicable. In fact every other cancer patient I have come across has shown amazing strength and courage, and been an inspiration to me – from people dealing with cancer late in their life, to the little child in that picture having to deal with it so early.

So there we go – apologies this post was a bit of a heavy one, but I felt the time was right to share something that had a profound impact on me, and also pay tribute to the attitude and strength of all the others out there going through similar experiences.

For tomorrow, as a reward to you all for making it through this post, I have some happy Saskia news and photos for you.

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7 Comments

Filed under Battle with Melanoma

7 responses to “Why me?

  1. Ron and Nancy

    Amazing writing, amazing feelings, amazing sharing, Ben.
    Thank you for sending your blogs.
    It is almost 8:00pm here in Stouffville. We hope you, Sally and Saskia are all tucked in and having a good sleep.
    All our love,
    R&N
    xoxoxo

  2. june and colin

    hello Ben its your over seas connection … Im sitting here watching Inspector Morse, but to be honest with you, i would rather watch cops or something alittle faster, but when your married you understand she gets to watch what she wants. Keeps the peace! Anyways, i wanted to thank you for sharing all your stuff with me , i opened up my emails tonight and there you were. I know its probably not easy to share your feelings but a real man does…And your a real man and i do admire that….I am also someone who shares feelings with others… Why keep it in? doesnt make sense to me. Anyways, i guess i should finish this reply for now, but i will be in touch soon!
    Take care of yourself mate and if you feel like writing to me personally in private you can.. Im only an ear away!
    your over seas connection. x

  3. Angela

    Good morning Ben, you are so special and I am sure Sal thinks so too, even on the bad days! Just wanted to let you know that one of my colleagues, who has been following your blog, has a very close friend who is experiencing many of the things that you are with regard to your treatment and feelings relating to your brain mets. She says that your blog has helped her a lot in understanding what he is going through – the lows, the not so lows and the good days!
    Thanks a lot Ben – hope you can get out for lunch this week! Ange x

  4. Dear Ben, thank you for all your recent updates and especially this one. So appreciated you willingness to be transparent and share your internal process with all of us in your fan club – especially the parts where you experienced shame. That is surely the bravest thing to do – to expose the dark side of your humanity for all to see – the side that most of us try to keep well covered for fear of losing the love and respect of our tribe and being cast out. Interesting that this honesty has the opposite effect: rather than judging you, i just love you more and am so grateful to you for your courage to speak about the unspeakable. With no fear of repeating myself, I am admiring, as ever, your determination to maintain a positive attitiude in the face of some potentially very compelling reasons to sink into fear and depression. I was touched to hear how the picture of the child with cancer gave you a very different perspective on your own situation. My spiritual teacher in LA used to say that gratitude and service are the shortest bridges to the 4th dimension: heaven on earth :). You inspire me to be more grateful in my own life – for the struggles as well as the effortless Grace. Blessed be. All love, Steph

  5. Claire & Phil Leslie

    What a wonderful message – as always, we couldn’t be prouder, Loads of love xxxx

  6. Lindsay Macdonald

    You don’t know me Ben but thankyou, thankyou very much indeed x

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