Tag Archives: steroids

Up and Atom II – Revenge of the Linear Accelerator

So as some of you might guess from the post title, I have started my second course of brain radiotherapy (the first course being back in May).

It’s much the same deal as last time, five treatments spaced over five consecutive days – number two was today, so I finish Friday.

This was all requested by the team at St. George’s in Tooting, but the treatment is carried out in Canterbury to save us travelling to London each day. We owe a massive thank you to the team at Canterbury for organising the treatment at such short notice.

So far the radiotherapy has had no ill effects. In fact I had probably the best nights sleep last night that I’ve had in months. I don’t know if it’s related, but long may it continue! Tiredness is listed as a side effect I think (I’m not very thorough at checking side effects these days, I just sign consent forms like they’re going out of fashion!).

Other than that I don’t have much exciting news. Legs are getting even weaker, and stairs present a major obstacle. We have been referred to an Occupational Therapist who can hopefully help with that and a few other problems. Also once the radiotherapy kicks in I should be able to reduce my steroids, which should lessen the muscle wastage in the legs.

I’m also going to get a stick. It’s not unknown for me to get stuck in low chairs nowadays, without the strength in my legs to get up. Also with my pathetic legs my walking isn’t that stable. So I figure a stick might be helpful. I’m going to get a cool mountaineering stick though – not an old man wooden stick with a duck’s head on the top.

It will also be useful for prodding things, for example distinguishing between rocks and hedgehogs – an awkward situation I often come across.

Yep, that’s about it for news. Except for flu jab on Saturday and clinic and chemo next week, so all in all it’s a very busy time.

Will hopefully write again at the weekend.

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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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A melting pot of news…

So I thought I’d post again to update you on everything I didn’t manage to fit into Monday’s post (which is quite a lot!).

Firstly then, an update on how I am feeling – not too bad thanks. The radiotherapy certainly seems to have had a positive impact on the brain situation – I’ve not really had any head aches or pressure since the treatment. I have reduced my steroids to half the original dose, and stopped taking codeine about a week ago (leaving me just taking paracetamol in terms of pain relief for my back). Cutting down on the steroids has had a positive impact in terms of reducing my appetite (back down from six meals a day to a paltry three!), and reduced considerably the profuse sweating (a bonus for everyone who has to come near me). The plan is I gradually keep reducing the dose until, hopefully, I can come off them entirely.

Unfortunately I still have the excess weight gained during my rabid, non-stop eating phase while on the higher dose. I have generally put on weight, but another effect of the steroids is that it tends to collect in certain areas – for example round the cheeks and neck, which means I now have an almost perfectly spherical face. I have also developed a ‘hump’ on the back of the neck. This is all part of ‘Cushing’s syndrome’, which occurs as a result of prolonged excessive exposure to the hormone cortisol (i.e. the steroids). I didn’t realise I had a hump, until reading aloud the symptoms of Cushing’s syndrome from Wikipedia – at which point Sally confirmed that, yes, indeed I did have a little camel hump. Only unlike for a camel it serves no useful purpose for me, not even as a small makeshift pillow for hospital waiting rooms.

In addition to my round face, I have lost my hair due to the radiotherapy. They said it might fall out, or thin, or do nothing (covering all bases there then). It started to fall out Tuesday last week – thinking it might just thin a bit, I tried to just get all the loose hair out in the shower. Putting wax in it after my shower resulted in very hairy palms. Wednesday I did the same, and tried again on Thursday – only that time there wasn’t an end to the loose hair, it didn’t stop coming out. As we were off to the Marsden I had to make the best of what was left – but I did look a bit mangy, complete with bald patches that merged with other bald patches throughout the day. So Friday morning we went at it with clippers and a razor, and took the lot off.

I am quite enjoying my new look – partly due to novelty value (probably not something I would have tried otherwise), and partly because I now have more reason to make use of a fine and varied collection of hats (not so much to hide it, more to protect my newly exposed scalp from the newly exposed sun). I do still find myself slapping shampoo on my head in the shower, before remembering that it’s no longer necessary.

The shaved head in conjunction with the round face does mean I now bear a striking likeness to the full moon. For a small fee I am currently available for any lunar-themed kids parties or events.

The vision situation hasn’t improved, and I managed (with some effort!) to get the doctors to admit that it probably now won’t. They said the steroids might help it – but once I pointed out that I have been on high dose steroids for the best part of a month, with no improvement, they admitted it was unlikely to return. Which isn’t great, but in truth if I get out of this with slightly impaired vision, I’d take that in an instant. I’m starting to learn to compensate for it and so it has been bothering me less of late.

The radiotherapy did take it out of me a bit last week – although not to the degree of ‘withering wreck’ (hopefully I am safe from having to eat those words). I didn’t feel too bad, but there was an underlying level of tiredness. This week my energy levels seem closer to normal, which is reassuring. The doctors also seemed sure that any reduced energy was due to the treatment, rather than anything more sinister.

And finally my back seems to be fairly stable at the moment, perhaps having even improved recently. I still can’t stand still in one place for a prolonged period without getting pains down the legs, but in terms of mobility I have been fairly active over the last few days, and it has given me very little grief.

So that’s enough about my physical state – what have I been up to over the last couple of weeks instead of blogging?

Well Monday last week I finally managed to get round to arranging the photography lesson (or to be more specific, ‘processing photos on Adobe Lightroom’ lesson) that I was forced to cancel on that fateful day when my head nearly exploded. A big thank you to John at White Light Photography (the same guys who did our beach photo shoot) who came round and spent two hours with me showing me how to organise and process my photos.

Armed with my newly acquired knowledge, I have been taking time to sift through my photos from the last year or so, and pick out and work on my favourites. Rather than just leave them on the computer for no-one to see, I’ve decided to set up a page to host them on Smugmug – if you want to have a look, I have added a link into the sidebar to the right of the blog, or click here > seebensphotos.smugmug.com

It has been great to finally take some time to make something of these photos. They’ve been taken over the last year since I bought the camera, but they have just been sitting on the computer doing nothing, with me never having the time to play with them or try and make the most of them. I still consider myself very much a beginner photography wise, but I am enjoying the experience of learning.

We were also able to arrange for my Dad to visit last week – which was very enjoyable. We managed to coordinate it so he could come along and see Saskia swimming – she was on good swimming form too, less focused on drinking the pool water this time, more focused on being good at swimming.

On the subject of Saskia, she has finally cracked the art of crawling – first managing it a couple of weeks ago. She’s not been off everywhere as we perhaps expected – but she is now able to deliberately move around when she wants to. She will purposefully move across her play mat when she decides she wants to get to something over the other side for example (sounds like there is some kind of ‘why did Saskia cross the play mat’ joke in there somewhere – I’ll work on that for my next post). Unfortunately for Pickle this means that placing himself just beyond her reach is no longer sufficient to avoid clumps of his hair being tugged – he now has to learn to use altitude to his advantage if he wants to sleep without keeping one eye open.

And the news I know you have all been waiting for – Saskia’s sunglasses have arrived! Given the rubbish weather, today is the first real opportunity we have had to try them outdoors – and as predicted it might take a bit of getting used to before she stops trying to take them off. But here is a picture from yesterday of her doing ‘a Bono’ and inappropriately sporting sunglasses indoors – I think you will all agree she looks pretty cool (far cooler than Bono anyway).

Cooler than Bono (and actually better at writing songs)

The other big focus of the last week or so has been researching and working on our all round, integrative treatment approach. Obviously the hospitals and doctors take care of the ‘conventional’ treatment (chemotherapy, radiotherapy, pain relief, etc) – but that is just one aspect of our approach to tackling this. We have been working toward an all round plan for some time, but it’s been slow progress given hospital appointments and just trying to stay on top of every day life given all that’s going on (I never realised how much admin having cancer can actually involve!).

But we seem to have finally made a breakthrough – both in terms of research avenues bearing fruit, and actually making the changes to our lifestyle. As mentioned in my last post, the news last week has also given us the kick up the arse we needed to actually take the difficult decisions that we need to.

You might have noticed that I am saying ‘we’ and not just ‘I’. That’s because Sally is being amazing and joining me in making many of these lifestyle changes, recognising that (particularly where diet is concerned) there’s no chance of me eating a bunch of cold salad if she is sat in front of me with lovely sausages and mash.

So what are we doing? I won’t go into all the details, but here’s the general idea…

Exercise

Every day now after breakfast I am doing two brisk laps of the recreation ground behind our house, which according to my phone is 2.5km / 1.6m – usually taking me half an hour. The morning is non-negotiable – but if I get time (depending on whatever else we are doing) I am aiming to do the same in the afternoon. So far I’ve managed both mornings and afternoons the last few days. After a period of inactivity given the brain situation it’s nice to get off the sofa and get some exercise. It really does make me feel better – obviously it’s good for me physically, but also mentally in the sense that I still feel I can get up and walk three odd miles in a day, without being hindered by my back, the disease, treatments, etc. That feeling helps contribute to the whole ‘keeping positive’ thought processes.

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Diet

So we are making some big changes to our diet – but sensible changes (we’re not going down the route of living on nothing but wheatgrass!). Sally has been incredible, throwing herself into online research and books about cancer and nutrition (after my CT scan Thursday she busied herself in the nutrition and food section of Waterstones, while I had a forty-five minute nap in one of their comfy armchairs – I did fully expect to get ejected from the store, given that I looked like a moon-faced hobo with half a head of hair who had just gone in for a sleep, but I was left alone). She has identified foods for us to try and reduce or eliminate, and foods for us to try and increase our intake of. Again, I’m not going to go into massive detail (because it’s probably really quite dull for the rest of you) – but essentially what we’re doing is this;

  • Dramatically increase intake of fruit and particularly veg, to eight portions a day minimum (especially raw stuff – salads, etc).
  • Incorporate juicing into our diet – by this I don’t mean fruit juices from Tesco, I mean buying a juicer and juicing raw fruit and veg as a way of getting concentrated nutrients into our diet.
  • Reduce red meat (now only allowed as a treat when eating out).
  • Reduce animal proteins in general (but not eliminate entirely – like I said, sensible approach!).
  • Dramatically reducing sugary treats and snacks (chocolate, biscuits, ice cream. etc).
  • No alcohol – this one I am doing alone. I haven’t drunk for about two months, and at a time like this I just don’t feel like it. So watching Sally have the odd glass of wine is no problem for me.

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Mind

Basically this involves reducing stress and trying to incorporate relaxation techniques and times into our daily routine. So we’re being careful about over committing ourselves, simplifying things like how we managing our finances, and have started to incorporate meditation daily.

It has to be said, meditation is far harder than I thought it might be – I always thought it was easy to switch my brain off (generally if I sit still for more than ten minutes I fall asleep). But it has been proving far harder to empty my brain of thoughts than I expected. Even so, I think it is still beneficial to just stop for a period each day, and take some time to just do nothing – and as we get better at it the benefits should only increase.

This section also includes positive thinking, visualisation, and some other areas we haven’t yet explored – such as hypnotherapy, psychotherapy, and music therapy. Of those three I’m not sure if hypnotherapy is for me. Psychotherapy possibly – it has been offered, but so far this blog has pretty much been my psychotherapy, so I haven’t gone for it. That’s not to say at some point in the future I won’t. Music therapy I think I could definitely go for, being a big music fan. I used to listen to music in the car, but now I can’t drive that’s not happening anymore. For the first time in a long time I am listening to music as I type this – Guns n’ Roses. Right now I am thinking that Guns n’ Roses should definitely form a much larger part of my treatment program going forward (old Guns n’ Roses, not so much new Guns n’ Roses).

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Herbs / Supplements

So there are a number of substances that have shown possible promise in fighting melanoma – sometimes in human trials, other times with lab grown cancer cells or animal trials – and many of these are available as nutritional supplements. Don’t get me wrong, we don’t expect any of these to be a sudden miracle cure, and one could spend a fortune if one wanted to on everything that had at some point been rumoured to have a benefit. But some well placed and targeted research has thrown up a few things of interest.

An important question is whether or not to take these while undergoing the conventional medical treatments, should they cause any interactions or interfere with the action of the chemotherapy or radiotherapy. So I haven’t been taking anything so far – but now I am in a period of no conventional treatment, this avenue does become an option.

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So there we go – that’s an insight into our integrative approach. It is going to entail some difficult choices – personally the diet aspect is going to be the hardest for me. I have asked numerous doctors about diet, and the answer I generally get is that I should go home, and eat what I want (although with an emphasis towards a balanced diet). Which always leaves me wondering whether I really should eat that Easter egg, or leave it well alone. On the one hand you have the doctors telling you diet won’t make a difference, on the other hand there seems to be plenty of credible evidence that diet can help in your fight.

So who to believe? I’d like to believe the doctors, and just eat pizza every night followed by Easter eggs for dessert – but when the stakes are this high, I think it makes sense to hedge your bets on the eating healthily side. Let’s face it, as long as we are sensible and don’t go on any mad ‘fad’ diets, it’s not going to do me any harm – and if it does help will have been well worth it.

Right, that’s about it for today I think – thanks for reading.

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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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Treatment Update, Update

Just another quick update to let you all know what happened yesterday.

So we went to see the consultant at Canterbury Hospital, who had a look at my scans and did a few physical checks to test brain function – stand on tip-toes, with your arms out, twirling your fingers, kind of thing (like you might see police asking suspected drugged drivers to do on ‘Police, Camera, Acton’, should you be into that).

The conclusion seemed to be that yes, my vision is certainly impaired, but beyond that everything else in there seems to be working pretty much as normal – which is good to hear.

They also advised that I reduce my dose of steroids, to just enough to keep the symptoms under control – which will be a bit nerve-wracking at first. On the plus side, it should hopefully reduce the desire to eat everything in sight (increased appetite being a side effect of steroids). Although I must admit to having very much enjoyed eating everything in sight.

The actual radiotherapy itself is pencilled in to begin on the 10th May – which is later than I expected to be honest. However, there are as yet unknown variables in there, such as whether or not I have the third cycle of chemo next week, which will depend on CT scan results. If no chemo, then radiotherapy could be brought forward.

So it’s still a bit up in the air. I will have to get in touch with the Marsden anyway to let them know I can still make my scan appointment next week, so will see what they say about the chemo, and go from there.

A good thing is that Canterbury seem fairly relaxed about overlapping the chemo and radiotherapy. Which I am pleased about – I seem to have been tolerating the chemo pretty well, so am happy to go for both.

That’s about it for yesterday’s news – will write more soon.

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About library books then…

Firstly, sorry it’s taken me a couple of days to write – things have been a little up and down since my last post.

So yesterday morning I woke up with no improvement in my vision, but thankfully no head pain. I spent most of the morning in bed, dozing and watching the F1 practice sessions. The vision problems made being up and about so awkward and disorientating, that it just seemed easier to stay lying down in one place. Dosing myself up to the maximum on codeine also probably played a part in my inertia.

Then mid-afternoon we got the call from the Marsden with my scan results. As has been fairly typical of my recent ‘result getting’, they weren’t what we would have wanted to hear – which would have been something like this…

“Good news, the cancer’s gone!! Your headache was just cancer withdrawal symptoms. You’ll be over that in a few days, then back to work with you on Monday. Hurrah!!”

Instead, the scan showed that the disease in the brain had unfortunately progressed.

While not great news, we knew this would probably be coming at some point – the reason being something known as the blood-brain barrier. Now I won’t pretend to have a detailed understanding of how this works, but essentially it seems to be there to protect the brain from certain things in the blood (bacterial infections for example). So obviously it evolved for a reason, and has a useful purpose. However, in my case I would be grateful if it would take a little mini-break, and just sod off for a few months – because it also happens to be preventing my chemotherapy treatment from reaching the brain metastases.

This is one of the reasons that the news that the cancer had spread to the brain was such a blow. It meant fighting the battle on two fronts – the brain, and the rest of me. Each front requires a different treatment, each with its own side effects – and usually these treatments are not given at the same time, so as to spare the patient the cumulative side effects of both treatments together. Now I’m not a military strategist (except on the Xbox now and then) but it seemed to me that by fighting on two fronts, and only allowing yourself to fight one front at a time, you are putting yourself at a disadvantage.

But again, this is what the Marsden do – and they have their reasons (like always, based on evidence and logic). And I’m sure that to compare fighting cancer to playing a game of ‘Command and Conquer’ is a gross oversimplification on my part!

So anyway, back when the brain mets were discovered, as I was asymptomatic the doctors decided to focus on treating the rest of the disease, and to just keep an eye on the brain for the time being. In two weeks time from now (at the end of my second chemo cycle) I was due to have another scan, and they would weigh up what was going on where, and what to do next.

The events of the last few days have changed all that. The plan now is that next week I begin a course of brain radiotherapy. Unfortunately due to the spread and position of the brain mets, targeted radiotherapy is not currently an option. So I am going in for ‘whole brain’ radiotherapy – which is a prospect I find a little daunting to be honest. Most of my life I have become familiar with the idea that radiation and brains are best kept separate (primarily based on a passion for submarine films, usually involving nuclear reactor leaks of some sort). So I am a little nervous.

It sounds like the treatment is likely to be given over a course of five days, and will come with side effects including feeling wiped out, nausea, skin problems, and hair loss. Which will be interesting – I guess I will finally start to look like a cancer patient (at least I might then feel able to sit in the ‘priority for people who can’t stand’ seat on the tube without people thinking I am a fraud).

So that news came as a bit of a blow yesterday – although more due to timing than anything. I had been hoping to make it through the next couple of weeks until the next scan before we started having to think about all this. But it seems cancer was not paying attention to the schedule (I think I’ll have to have a quiet word).

Getting back to yesterday afternoon then – almost exactly as I got that news, I felt the pressure in my head coming on again – perhaps psychosomatic, perhaps coincidence, or perhaps because I had got all cocky and halved my dose of codeine. It wasn’t the crushing headache of the day before, but I feared that was where it was headed – so I spent most of the remainder of the day trying to lie as still and quietly as possible, to try and keep it under control (not helped by a screaming, teething baby who didn’t want to go to sleep).

And that is exactly how I have spent most of today – lying in bed resting, watching F1 again, and willing the pressure in my head to subside. Which, around mid-afternoon, it finally did – and I felt well enough to come downstairs, eat dinner, and write this post.

I’m currently still on a whole cocktail of drugs – steroids to reduce inflammation in the brain, paracetamol, codeine, etc. There is still no real improvement in my vision, which was starting to worry me. Although we spoke to our local hospice today (who specialise in pain management and symptom control), and they advised that it could be Sunday or Monday before the steroids really start to kick in. Hopefully the subsidence in pressure this afternoon is the start of that, and my vision will return soon. They also gave me some liquid morphine, in case I get more pain that the codeine won’t control. It makes me feel safer to know I have the next step in pain control in the house ready, just in case I need it – rather than needing it in the middle of the night and not being able to get it.

So there we go. I also want to say a massive thank you for all the messages I have received over the last few days – via the blog, e-mail, text, Facebook, etc. I am sorry I haven’t been replying, but the headaches and vision problems have left me limited for time, energy and typing accuracy (especially on a smartphone keypad!). But the messages I received all meant a lot, so thank you. I will try to reply soon.

Wow – I just realised that after writing the title of this post with the best of intentions, I got distracted by all this cancer stuff, and haven’t written anything at all about library book filing systems. It’s pretty late, and I’m quite tired now, so I think I will have to give it a miss. A big sorry to anyone who waded through all this cancer stuff, only to feel misled and disappointed by the content of this post.

I’ll try and make it up to you tomorrow.

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The day after…

In ‘the chair’

So I thought I’d just give a short update after my treatment yesterday, and include a little photo too (just to show I’m not making all this up!). That’s me (obviously) sat in the chemo chair there with, my temporary friend, the chemo pump attached to my arm.

Anyhow, in summary all went well, although as predicted it was a long day.

We had to wait around for quite a while in the morning for all my various tests and results, but eventually they all came through. Apparently my blood results were ‘beautiful’ – which means that my white blood cell count had recovered very well from the last cycle. So after a quick chat with the doctor, we were given the go ahead for the second cycle.

However, there was still a couple of hours before I was actually due to receive my treatment (apparently my drug has to be made up on the day, so they wait until they have my test results and know we are going ahead before starting the process). So Sally and I managed to get out of the hospital and treat ourselves to a nice lunch at the Builders Arms (a ‘gastro pub’ nearby – thanks Kate for the recommendation).

After which it was back to the hospital for a bit more waiting around, before finally taking my seat in the chemo chair. One advantage of being treated late in the day is that there is hardly anyone else there. So it’s a nice calm environment, I get to choose where I want to sit, and the nurses have a bit more time to spend with you – we met a lovely nurse who organised my treatment, and spent ages chatting to us about anything and everything.

The treatment itself was fairly uneventful. First of all they give you a dose of intravenous steroids, which caused a bit of tingling in my fingers. After that it’s onto the chemotherapy itself – that’s what’s in the blue bag above me in the picture. The drug itself comes in a clear bag, but has that blue cover put over it. I was intrigued to know why the blue cover – apparently the drug is very sensitive to light, hence also the orange tube through which the drug is delivered into my arm. That pump thing under the blue bag controls the amount and rate of the drug infused. Fascinating stuff (or at least I thought so!).

So once it was all done I was unhooked from the pump, and we were free to go. Fortunately we arrived at Victoria Station just as the platform for our train was announced, so were only just behind the main stampede of commuters (like charging wildebeest) from the station concourse to the platform, and managed to get a a table quite easily. I didn’t feel too many physical effects on the way home – a few hot flushes, much like last time, but that was about it.

Once finally back at home we treated ourselves to a pizza, and some rest.

So today has mainly involved more rest, although I’m not feeling too bad. They give you anti-sickness meds and steroids to take for the first three days. The nurse explained that the steroids can lull you into a false sense of security for those few days, keeping most of the side effects of the chemo at bay, after which you can come down with a bump. Which would explain the wall of tiredness I hit last time around the weekend after the treatment.

I did however go to Whitstable today to watch Saskia in her swimming lesson again, followed by lunch in a nice little cafe. Which was all very pleasant.

Thanks very much to all those who posted and sent good luck messages yesterday. I had intended to post a reply while on the train home, but my phone battery was dead by about 2pm. Need to think about getting a spare battery for those long days.

Thanks also to my Mum and Sister for looking after Saskia – it sounds like she didn’t give them too much trouble!

Right, that’s about it for now I think – will write again soon.

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