Monthly Archives: August 2012

Weebles wobble…

…but they don’t fall down.

So I recently discovered that I am turning into a Weeble.

For the benefit of anyone not familiar with the concept of Weebles, they are egg shaped little characters, with no legs, and tiny little arms. A picture is worth a thousand words (apparently), so here are some pictures of Weebles I found on the interweb.

A Weeble

So this little chap above is a Weeble. As you can see, no legs, tiny useless arms, and a flesh coloured shirt. He also appears to have holes where his eyes should be. His catchphrase is ‘Weebles wobble, but they don’t fall down’.

I used to have Weebles when I was a child, and a little see-saw and roundabout for them to play on. As you can see in the picture below, Weebles like playing in the park – my Weebles did not have the slide or swing unfortunately.

Weebles at play

My final Weeble picture shows a herd (I think that’s the correct collective term) of Weebles who appear to be lining up in some kind of battle formation. I’m not sure who they are preparing for battle with, or who or what the natural enemy of the Weeble is – perhaps some enormous bird of prey that pecked out all their eyes?

Weebles at war

Looking at Weebles now, I actually find them rather disturbing. Why are they all wearing flesh coloured clothing? And why do they have holes instead of eyes? They don’t look appealing, they look creepy. Fortunately the toy industry has come a long way since then. Lego, it’s the only toy you need.

Anyway, moving on, why am I talking about Weebles? Well, as we have learnt from our discussion so far, Weebles are all torso with no legs and puny little arms. Well, thanks to the steroids I am taking to stop my head exploding, that’s exactly where I’m headed (only I come with changeable shirts in various colours, and proper eyes – hopefully making me slightly less creepy).

As I have probably previously mentioned, one of the side effects of steroids is increased appetite. That, in combination with my recent limited mobility (and therefore lack of exercise) has led to me… well… getting a bit fat, especially in the typical areas where steroids make you put on weight – face, hump on back of neck, and midriff. Yet whenever I have been weighed at various hospital appointments there has been very little variation in my overall weight – which had been puzzling me.

Then the other day I found out why – I learnt that the steroids cause the muscles in your arms and legs to waste away. So while I am putting on weight in certain areas (particularly the stomach area), I’m compensating (unintentionally) by losing muscle mass from my legs and arms. Hence my overall weight has remained relatively stable.

This explains why things like climbing stairs have become such an ordeal. My upper body, which needs to be carried around by my legs is getting bigger and heavier, while my legs are getting progressively weaker. This is not a good thing.

The steroids are a double edged sword – they are performing a vital function in controlling inflammation in the brain, but most of the problems and issues I have (particularly around body image) are as a direct result of their extensive list of side effects. Prior to going on steroids I still looked like me – if it weren’t for steroids I’d still look like me, instead of  slowly turning into a Weeble.

The doctors tell me to be on the lowest dose possible to keep away symptoms of the brain mets. So I find myself in a constant cycle of trying to gradually reduce the dose, only to then increase it again when I get a headache or vision problems.

In recent weeks I have had a few instances of what the doctor described as a ‘visual seizure’. The most recent was only a couple of hours ago – the other two came after a trip to the cinema, and watching a film in a dark room. Basically my vision starts to flicker a little, and I see multi-coloured little shapes (like a zig-zag for example) crossing my field of view. It would be quite pretty, if it weren’t accompanied by the fear that something is about to haemorrhage in my brain.

That’s what the doctors think happened all those months ago when I lost part of the peripheral vision in my right eye, and I’m not expected to get that back – that area of the brain is apparently ‘permanently dead’. So as you can imagine these episodes of vision problems make me quite nervous. The first time I immediately took the maximum dose of eight steroid tablets, the second time four tablets.

The problem with increasing the steroid dose is that you then have to decrease it gradually (one tablet per week) which then just prolongs all the negative side effects. So today when my vision went I just closed my eyes and waited it out – and after an hour or so it resolved itself. The doctors aren’t sure if these vision issues are disease or treatment related, so wolfing down a load of steroids isn’t necessarily the right reaction. I guess I’ll keep trying to reduce the steroids, and see  if they increase in frequency or intensity – that might give us an idea what’s causing them. It gives me a bit more confidence that today’s incident resolved itself without me taking any medication.

Other than turning into a Weeble then, there’s not too much to report. I seem to be tolerating this second cycle of chemotherapy pretty well, with no major side effects to speak of. I get a little dizzy and light headed sometimes when I stand up, particularly towards the end of the day, but am yet to fall over, which is further evidence for the Weeble connection – I wobble, but I don’t fall down (yet).

Pain in my arm has significantly improved, and even the back pain suddenly seems to be beginning to fall in line – it’s still there, but I found myself crawling round the floor chasing Saskia yesterday, which I would never have been able to do a week ago. At this point I’m reluctant to tempt fate by being too optimistic, but it seems there is some improvement in that area at last. And my energy levels seem to be improving day by day at the moment.

So all in all, apart from resembling a creepy toy from the 1970s, I feel in a pretty good place right now.

Right, that’s it for today. Barring any sudden unexpected developments in my situation (please no!), the next post will be about Saskia.

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Seagull Massacre

It’s early Saturday morning, and as usual I can’t sleep. So I’ve decided to write a blog (in bed, from my phone – ooh, get me…).

I’ve been having sleep issues for a while now – I wake throughout the early hours, and then struggle to fall asleep again. This is largely the fault of seagulls.

Our bedroom can get quite warm in the summer, so it’s nice to open a window at night. However, open a window and from four in the morning one has to listen to screeching seagulls on the roofs of the surrounding houses. To be honest ‘screeching’ is a generous description of the hideous noise they make.

Several times while half asleep I have birdicidal (yes, I made a new word – that’s how language evolves, as Sally would say) dreams of buying an air rifle and ‘silencing’ them once and for all. Only when fully awake to realise that I have a very limited field of fire from our window – plus there are lots of them, and perhaps waging war against the entire local seagull population is a bit beyond my current energy levels.

Having said that, I have had a relatively active week. I’ve had two trips to London for hospital appointments, and on Thursday actually found the energy to do some DIY.

This took the form of screwing two flowerpots to the outside wall, and putting up a bracket for a hanging basket. Ok, so it involved a lot of huffing and puffing, sitting down for a rest at various (actually most) stages, and getting annoyed at badly designed pots that don’t allow enough room to get even the smallest screwdriver in to tighten up the screws. What should have been a simple job, wasn’t – although finding a solution actually just made my amazing feat of DIY even more rewarding (so in the end I was secretly glad that the pots were designed by an absolute moron).

For someone who a few weeks ago could barely shower without fainting from back pain, I was pretty chuffed with my day’s activities – it represents a big improvement (and earns me some guilt free Xbox credits).

So back to the hospital visits then. Wednesday I was in for my pre-chemo clinic appointment (chat with doctor, blood tests to see if blood counts have recovered, etc), and then Friday I received my second infusion of chemo and bisphosphonates. Which all went very well.

I seem to have tolerated this chemo pretty well so far. The doctor told us in clinic that he had given me a very high dose first time round. I think dose is dependent on height and weight, but also kidney function – apparently my kidney test came back with very good results (hoorah, part of me that actually works!), hence the high dose. He did say the pharmacist might tell him to reduce it for the second cycle, but when I overheard the nurses checking the actual bag of chemo yesterday, it was the same high dose.

Which I was glad about – although I don’t really understand the link between dose and response. When he said he might have to cut the dose he said this wouldn’t affect the response. You would assume more equals better, but I guess it’s not that simple. Either way, I personally would like to get as much of the stuff in me as possible, just to be sure.

Especially given the fact I seem to have had no identifiable side effects from the first cycle. That might well change, the effects of chemo tend to be cumulative with subsequent cycles. But so far since starting this treatment I have felt better, as opposed to worse.

It would be wonderful to believe that it’s down to the chemo working, and kicking the crap out of the cancer – but I’ve learnt too many times on this journey not to get my hopes up too much.

There are a number of other factors to consider; the receding side effects of the brain radiotherapy, the beneficial effects of my back and arm radiotherapy, the bisphosphonates, and an improved pain management regime, which could all be contributing to my improvement. But lets hope the chemo is in the mix there as well, doing something positive.

So what else have I been up to? Well, watching the Olympics. I was a big Olympic sceptic beforehand. I still think it’s a massive waste of money at a time when we didn’t need to waste a massive load of money. Having said that, I have got suckered in to watching it.

You might have heard that Boris Johnson has suggested that kids should do two hours of compulsory sport a day in school. At first I thought he had just got carried away with all the ‘Olympic mania’, then I realised he was onto something – only he hadn’t gone far enough. I realised that kids should do ONLY sport in school. I know that sounds silly but bear with me, I have a plan…

That way, all our kids will be REALLY good at sport, and every four years at the Olympics we can win ALL the medals. This will result in a huge surge of national pride and self-congratulation.

A huge surge of national pride and self-congratulation that will hopefully last just long enough to get to the next Olympics, where we will win ALL the medals again. And so on.

What this national pride and self-congratulation will allow is the populace to forget all the other issues in their lives – that the economy is screwed, the government is incompetent and we have Porky Pig as chancellor, innocent people are dying in Syria and around the world, university degrees are now prohibitively expensive and useless, our tabloid press is immoral and corrupt, people are denied life extending cancer drugs because they are too expensive, no one under the age of forty can afford to buy a house anymore, etc, etc.

No one will care about any of that. As long as our nation is the best in the world at making a horse prance round a sandy square in a hoighty-toighty manner to the sound of ‘Live and Let Die’, none of that other crap matters. No one will care because we will have all the gold medals IN THE WORLD, and that makes us the best.

The media have also been lamenting potential cuts to sport funding after the Olympics. As part of my plan I think we should divert more money to sport (if not all of it) to aid in this quest for medals. I mean, take the Cancer Drugs Fund for example – what a waste of money. Lets face it people with cancer are generally crap at sport (I’m not going to be winning any medals any time soon, unless they make crawling up the stairs then nearly fainting an Olympic sport). So for ultimate medal payback, scrap the Cancer Drugs Fund, and lets pour that money into something worthwhile, like horse prancing, or our beach volleyball team. It’s all about priorities, and investing where it counts.

Ermm… ok, might have got a bit carried away there. But then if I can’t use the blog for the odd (semi) tongue-in-cheek rant what’s it for?

Oh yeah, keeping you all updated about cancer… oops.

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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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