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.