Dark Days

So I know you have all been in suspense and checking the blog daily (in some cases hourly) after the exciting cliff hanger at the end of my last post…

Well the answer is yes, I made it to the bathroom and didn’t collapse (you did care, right..?).

I also managed to drag myself to London on the Friday for the first infusion of my new chemotherapy treatment. I was actually given two infusions – a chemotherapy called Carboplatin, and something called a bisphosphonate, which is to help with the bone disease (in my spine and arm). The nurse told us that the bisphosphonates can make things worse before it gets better (where have I heard that before?!). So just as I ended the ‘worse before it gets better’ period from the previous week’s radiotherapy, I began the bisphosphonates ‘worse before it gets better’ period.

However, a week and a half down the line, and I think things are improving – it’s slow progress, but it’s in the right direction at least. The pain in the upper arm (where the cancer is located) is subsiding, just leaving me with a bit of sensitivity and nerve pain lower down the arm and in the hand – which is an annoyance as much as anything. The pain in the upper arm will reappear if I do anything strenuous with the arm, so I have to make sure I keep it rested.

My back has improved slightly, which is a welcome relief. The pain and stiffness is still there – I have trouble bending, standing, sitting (depending on position) and can’t walk a great distance. However, the degree of pain is less than it was, which means I can do each of those things a bit more than I could a couple of weeks ago. So my overall mobility has improved, although I am still hoping for some further improvement over the next week or so.

It’s difficult to know exactly what is behind this upturn, as I am now on so many treatments. There’s the radiotherapy, the bisphosphonates, the painkillers (paracetamol and codeine), and I am also now whacked up on a drug called Amitriptyline. Amitriptyline is an anti-depressant, but is also used in lower doses to reduce nerve related pain (specifically the pain in my hand and the sciatic pains down my leg). The doctor also seems to view its anti-depressant benefits as a good thing.

I have found myself with a bit more energy the last week or so, and have made good use of this and my improved mobility by expanding my horizons beyond the bedroom and Comedy Central channels – I have been to see Saskia on the swings at the park, and to see her swimming at Faversham pool. It’s all little steps, my energy levels are still rubbish – but it feels good to be going in the right direction, and most importantly to be able to share in these moments with Saskia again.

In truth I had felt a little distant from her of late, which has been hard. Due to spending all day every day in the bedroom, I hadn’t been spending the time with her that I had previously. Sally would bring her in to see me, but it wouldn’t be long before she was bored and had to be taken elsewhere to expend her boundless energy. I wasn’t getting involved in playing with her, bathing her (my job before I got ill), or any of her outings to the park, swimming, etc. When Sally did bring her to see me, her interaction with me was different to before – rather than make stupid grinning faces at each other (pretty much the basis of our relationship) she would just stare at me and not respond. But that seems to be changing – as I’ve been getting more involved again over the last few days that interaction has started to come back, and we have had some lovely moments, which is a big relief.

That brings me onto something I wanted to talk about – which is almost a little ‘half-yearly summary’ of how cancer has affected my life since my diagnosis five months ago. Before I start though, I want to say I am aware that this next section might sound like a ‘poor me’ sympathy plea for loads of messages telling me how brave I am and to stay positive – but that’s not what I’m trying to do. So bear with me, hopefully my intentions will become clear…

The last month or so has without doubt been the hardest period of this battle so far, with the combination of fatigue (both physical and mental), pain in the arm and back, and just generally being confined to the house (or worse, bedroom). As a result, it has also been the biggest test of our resolve, and it has been very hard at times to stay positive. I was spending every day in one place, in pain, and beginning to lose the hope that things would improve. One night while lying in bed, I stopped to compare my life now, to the day before I was diagnosed – something I had not really done before. What I realised is that cancer has stripped away pieces of my life, one by one. Because it has happened gradually over a period of months I have just dealt with each blow as it has come along, got over it, and moved on – but by comparing my start and end points, it really hit me how much this disease has affected my life.

I have lost my independence – I can no longer drive, something I used to really enjoy. Now if I want to go anywhere Sally has to drive me, which then means Saskia coming, which might not fit with her routine, etc. No longer can I just take myself off to B&Q on a Saturday afternoon to add to my extensive collection of screws and rawl plugs for that DIY job I had been wanting to do (perhaps with a sneaky stop at the McDonalds drive through for a milkshake); I can’t drive myself into Canterbury to spend money I don’t have on camera bits from Jessops (possibly a good thing); I have to ask Sally to drive me to the place where I want to buy her birthday present, making it blindingly obvious what I am going to buy her.

I feel I have lost part of my identity – when I see myself in the mirror, I don’t associate what I see with my perception of myself. I see a short, fat, round-faced, bald man – I see Seth from American History X (a fat neo-nazi – if you haven’t seen the film, watch it). Ok, so I have never been that tall, and have always been a bit fat, no arguments there. But not having an perfectly spherical face and having hair gave the illusion of a couple of extra inches I think! Due to the back pain my walk has started to resemble a waddle, which is not a dignified look. I find myself conscious of people’s perceptions of me, and constantly aware that my outward appearance does not match with the way I think of myself.

I have lost my energy and physical mobility – this contributes to a more general loss of identity beyond my appearance, in terms of the other ways in which we define ourselves. I can no longer take part in many of the activities I used to enjoy. I walk around the house and see skateboards, surfboards and bikes around the place – all currently redundant. I have been off work for five months now, and whilst that might sound great, at least while working I had a purpose. I have begun to miss that, and recently begun to feel a little ‘aimless’ (or worse, pointless!). Sure I can still watch TV or play X-Box, as I did before – but the difference then was I had done a days work. It doesn’t seem quite right to get out of bed, shower, and get stuck straight into X-Box without doing something productive first. But I don’t necessarily have the energy for anything productive, so I find myself at a bit of a loss.

All of the above has also contributed to a general loss of confidence – both psychologically and physically. Psychologically, when you feel like a hamstrung, stifled version of your old self it’s difficult to have the same confidence that you had previously. And physically the loss of my vision means that I am still not as confident out and about in certain situations. Navigating busy places (supermarkets, stations, etc) is tricky. People come at you from all angles, and usual convention is you see each other, and both take evasive action if required. Except I don’t see people coming at me from the right, but they don’t realise that – which has predictable consequences. I find myself devoting so much of my focus to compensating for the vision loss, that it saps my general confidence out and about – I know that sounds odd, and I can’t really explain why it is.

It has also affected my relationships – as described above I feel I have lost time with Saskia (although I intend to fully make up for that). I am also a bit of a social recluse these days, for a number of reasons – I’ve missed numerous opportunities to see friends due to being unwell.

And finally, a little story… a week or so ago Sally was going on a hen night with a group of other mums with children around Saskia’s age. When it came to babysitting arrangements Sally and I had to discuss whether it was better for Saskia to stay at home with me, or go to spend the night with one of the other dads. The idea was perfectly sensible given the circumstances – in my condition it would have been very difficult for me if Saskia had had a bad night. But it hurt so much, and I felt so inadequate, that I’d reached a point where I wasn’t even capable of babysitting my own child.

So there we go, my little ‘progress report’ – when I took a step back and looked at the last five months, it shocked me just how much I have actually lost to cancer in that time. I have lost elements of my identity and confidence – and the horizons of my world (both physical and metaphorical) have gradually receded, until I find my world consists mainly of the house, and just a small selection of the things I used to enjoy doing.

It made me realise just how hard fighting cancer is, and what is involved. It’s not just about fighting the disease, the pain, and the side effects – it’s about fighting for all aspects of your life. Because bit by bit, it will strip away your world.

I think back to four or five months ago, when I had barely any symptoms, – it was easy to talk about fighting cancer and staying positive. Well, as time has gone on, the ‘fight’ has got harder and harder, and on more and more fronts. I now have a better understanding of exactly what fighting cancer involves – and it’s tough. And I’m sure there will be more tough times to come.

As I said above, I’m not writing this as a plea for sympathy. I’m writing this because I want this blog to be an accurate and faithful representation of my experience, a cross-section of what it is like to ‘fight’ cancer – the good days and the bad. So I decided that after what has been our lowest period since this began, it was important to share the experience.

Thanks for reading.

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17 Comments

Filed under Battle with Melanoma

17 responses to “Dark Days

  1. Dear Ben, I’m writing to say thank you. Thank you for sharing your experience with truth and transparency. You are educating me about all manner of things and holding my feet to the fire of what is my life and how I am living it. You don’t me, we have never met and yet you are willing to invite me in to the intimacies of your life, your relationships, your physical, mental, emotional and spiritual processes. I am humbled, grateful and in awe of your generosity and humanity. I send you love. Kate

  2. Lindsay Macdonald

    Dear Ben,
    “thanks for reading”… No, thank you for sharing…
    Like Kate, you don’t know me but I want you to know that your words give me strength. This last month has been especially difficult, and when I was beginning to wain I get a ‘bloggie update’… I asked for strength, and more importantly I was given it.
    I wish you peace and God’s love Ben,
    Linz

  3. Caroline

    Hi Ben,
    I can’t begin to understand or comprehend your current experiences, but you write about it so beautifully. Whilst the content is painful and upsetting for us as well as you- it is really good to hear from you. Thank you so much for letting you into your life and emotions.
    I can only speak from my point of view but if you do feel well enough to come out to see friends more we’d love it, just to the park for a coffee or a quiet drink in a public house. It’s good to see friends, if only for an hour. You could then go back home and play on the x-box having felt like you’ve done something productive!! Ha!
    Sending you love xx

  4. Hi Ben, that was really beautifully written – it’s very moving being allowed to share a small part of your journey. Sending best wishes to you and your family, Emily xx

  5. Gemma

    Dear Ben, thank you for another inspiring blog. As has been said already, your blogs are always so moving and your writing is beautiful. You and Sally are frequently in our thoughts, sending much love and peace. Foster sends wet kisses to Saskia xxx

  6. Jacqui

    Hi Ben
    It seems that you have the same problem as me – looking in the mirror…..There are two ways to deal with this. One – cover up all the mirrors in the house, let out your waistbands, buy a wig and ignore it all. Two – look in the mirror and know that although the outside has changed a bit (a lot) the inside is just the same and that’s what makes me Me, or in your case makes you YOU. That essential spark is still there as is evident from your writing. Dont focus on what you cant achieve – I did the 3 peaks in 24 hours and know that is not on the horizon at any time ever again which pisses me off totally but its a fact – focus on what you can do. Set small targets for every day – watching Sas on the swings, reading two pages of a book, enjoying some music, doing up your own shoe laces! 5 minutes time with Sas is so special so relish it as she will. See everything as an achievement and not something to be compared with as nothing compares to those moments.
    Enough already – back to trying to cook dinner on a broken cooker – can I really limbo under the garden hoe that Jason has used to keep the gas flowing – of course I can 🙂
    See you soon xxxxxx

  7. Jacqui

    Opps – no I cant – but dinner of some sort will be served. RESULT!!!!

  8. Abi

    So well written Ben and so well thought out. As hard as it is stay positive even through reading all that and the nightmare you have had to deal with over the last 5 months your positivity still shines through.

    Sending you lots of Waring love

    Abi, Bram and Holly xx

  9. waidehi

    Ben – you write beautifully as ever. We are thinking of the three of you muchly. Please continue to measure all your successes from moment to moment. You guys are just incredible. Much love from across the seas. W, S and L

  10. Martyn

    Dear Ben,

    We are all very sad to hear of your latest struggles. From your blogs it is clear you have maintained a ‘fighting spirit’, which is remarkable considering what you have been through.
    I can’t believe Saskia is old enough to swim. I keep thinking of Saskia as the baby from the framed photograph the grandparents keep in the living room. Kayleigh has a niece, Ruby, who is young too but it seems as though she has grown up so fast. She has so much energy and doesn’t stop walking and talking!
    Your blogs are, as ever, detailed and well written. You have, as granddad used to say, ‘an excellent command of the English language’. Please keep them coming.
    We all hope you feel better soon.

    Best wishes to you all,

    Martyn, Kayleigh and family.

  11. June and Colin

    hello Ben,
    Im so sorry your feeling very challenged at the moment. I dont know why im lost for words today… lets see if i can find them… First of all, I think its important to get outside.. even if the weather is raining or not..Fresh air can clear your head . If your sitting inside looking at 4 walls and thinking about stuff its not healthy. get outside even if its down the road alittle.. Sometimes I sit inside by myself and start thinking too much…When my wife says lets go out and walk its like pulling teeth with me sometimes, but when i come back i do feel much better.:) Have you been watching the olympics? do you think the usa are doing well? I thought it was crazy having it in London thinking theres not much room, but so far its been great…plus its extra income for britain etc… One of our friends flew over to london for 10 days to watch the games and her daughters husband is in the volleyball team which is cool.
    Ok ben, i will stop here and write too you maybe tonight or tommorrow..For some reason i cant think today…
    Talk to you soon
    Your over seas connection
    c x

  12. Clare

    Dear Ben,
    Just to say we’re all thinking of you guys. Ben, you have such a talent for expressing yourself both truthfully and eloquently. A future best selling novelist methinks…
    Stay positive…you guys are an inspiration.
    Love to you all,
    Clare, Pete & Sam xxx

  13. Like several others reading this blog, you don’t know me but I am so moved by your writing. I wish there was something I could do to help. I feel I understand a little of what having cancer really means and it is so moving and sad. You are all in my thoughts. Meriel (from York Uni)

  14. Rachel

    Ben
    I am truly humbled by you, your outlook and your attitude. I know this might sound trite (and you may wish to never hear from me again!) but having read your last blog, it has also bought to the surface how much you have “found” since your diagnosis. You have had the privilege of realising just how important your relationships are (especially your 2 rocks Sally & Saskia) – many people in this day and age rush through life and never truly “see”. You know who you are, and like yourself – again, so many people never reflect inwards, they judge everyone around them and criticise – they fact that you have had this truly hideous disease (and even though you openly admit how tough it is), you NEVER comment in a negative way. It certainly puts alot of everyday whinges and moans into perspective, and if I ever have to face such a devastating, ongoing trauma, I hope that I will draw on your experience and super-toughness to get me through.

    Keep going Ben – you are amazing.

  15. Pauline

    Ben,
    I can’t start to imagine what you are going through but find your courage and truthfulness an enormous inspiration. You talk about feeling ‘a stifled version of your old self’ – while that may be true physically you appear to me to be a tremendously strong and brave person.
    Thank you so much for sharing your experiences so honestly and openly.
    Pauline

  16. Sue

    Dear Sally, and Saskia,

    I came across this blog while thinking about my best friend who died from melanoma in 2010. I realised I live near you, but don’t recognise you…and I am so very sorry to read what has happened. I can see from the photos that you are such a great family, such lovely parents and a sweet, sweet little girl.

    I will think of you now, too.

    And if you are reading this from some other dimension, Ben – the weeble swing was rubbish, truly it was, they just fell off constantly.

    Just so you know, you weren’t missing anything there.

    Sending much love.
    Sue

  17. Sally

    Hi Sue.

    Thanks so much for your message. It’s really heartening to hear that people are still discovering Ben’s blog and finding it helpful in some way. I’ve been trying quite hard to keep its profile high on Google even though it’s no longer being updated so it’s good that you came across it. I’ll forward your message to Ben’s family too – they’ll find it very comforting.

    I’m so sorry to hear about your best friend…it’s a brutal illness.

    I’ve started to write my own blog this year about life for Saskia and I – if you ever feel like reading it it’s at sallyedge.wordpress.com

    Warm wishes,
    Sally

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