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.


Filed under Battle with Melanoma

5 responses to “Weebles wobble…

  1. Janine

    Ha ha, I remember the weebles, ours were lucky enough to have a campervan! It is great to hear that you are feeling so good and having fun chasing Saskia around. I am sure that she is loving it. We are really glad to hear that the treatment is having the desired effect of improving your pain and enabling you to function better. Hope you have a wonderful weekend celebrating Saskia’s first birthday. What a year it has been, you are a truly amazing family. We really are so glad that we met you and Sally and have travelled this path together. Lots of love to you all, the Pommers xxxx

  2. June and Colin

    GOOD evening or GOOD day Ben, Your 8 hours ahead of me, So its evening time for you and im just starting out my day!.Thanks again for sharing.Im always looking out for your updates..Today, Im sitting here at my desk , having fun paying bills and figuring out my next step in the business world. Very challenging at the moment which i enjoy for some crazy reason… One day i would love to sit down with you and discuss business and share ideas. Did i tell you , I met Richard Branson here in San Francisco? Yep, i had a long talk to him about exporting and importing to the Uk etc…He had a body guard standing close to him. Did you know he has 55 thousand employees! When you think about how hard it is too run a small business and then you compare yourself to someone like that, it makes things seem so easy and really nothing to worry about. When i was in Las Vegas doing a wholesale convention, i also met Kevin Costner whos wife was wholesaling handbags for computers, really cool stuff:)… something she designed and wanted to do…Not that they need the money, but designing is like therapy for some people….Anyways, hows the food thing going? are you still following that special diet…Its helps …. Ok Ben i hope i dont bore you with my stuff, but i think its healthy to share with each other and catch up…I wish you the best of luck , stay strong and everything will work out…:) As ive have always said, im just around the corner, so to speak.:) take care, your over seas connection c x

  3. Claire & Phil

    Hey – don’t dis the Weebles – they were brilliant! – and so are you – it’s not important what you look like, you’re on a journey with this and the weeble effect is just part of it, something to look back on when things improve. So pleased you’re feeling better Ben and managing the symptoms the way you are. Loads of love as always,xxxx

  4. Gemma, Matt & Foster

    Hi Ben
    Thanks for the update – we are frequently checking the site, or asking Sally when the next blog is coming. We’re so glad to hear that you are feeling better and having regular crawling sessions with Saskia!!! It was great to see you today. Hope the non-stop weekend of first birthday celebrations hasn’t worn you out too much. Hope to see you soon. You, Sally & Sas are always in our thoughts. Much love xxx

  5. Vic x

    Ben, you will never be as scary as a weeble. They terrified the living bejeesis out of me when I was a nipper. It was the dark holes instead of eyes, that did it. I was a fisher price people kid myself and although they had their oddities like the dog was the biggest member of the family by far, (taller than the dad!), they had eyes. Google them if you get a spare moment. Sending you love Ben. As always. Big hugs xxxxxxxxx

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