Tag Archives: radiotherapy

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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Tattoos, Frasier, and new treatments…

Greetings all,

Apologies it’s been such a long time since my last post – it’s been a period of ups and downs, which should become clear throughout this post.

Right then, where to start?

Ipilimumab

Well the first thing to update you on is our decision regarding Ipi. So following that disappointing appointment at the Royal Marsden (described in my ‘long time, no write…’ post), we went back to clinic a fortnight later to discuss the issue further. We approached this appointment fully prepared to argue our case to go on Ipi – but the doctor that we saw presented a very convincing case against taking this option.

She confirmed that it was the consensus of the whole team at the Marsden (including the doctor who had been on holiday during my previous appointment) that Ipi was not suitable for me because of my pre-existing ulcerative colitis. She advised that she had not been able to find any examples of anyone with a condition like mine being given Ipi; she also cited examples of two of their patients who were currently in hospital, both suffering from severe colitis induced by Ipi, both on intra-veneous steroids, and one of whom they did not expect to recover from the colitis.

Weighed up against this risk was the seemingly miniscule potential chance that the drug would actually have any benefit. She explained that their typical response rate was in the region of five per cent – hardly an inspiring figure! And even then I was advised that I didn’t fit the profile of a typical ‘responder’, so my chances of gaining any significant benefit from the drug were even less than that.

In light of these factors, and after much thought, we decided to turn down Ipi as a treatment option. We felt that it posed too much of a risk to everything else we were doing in terms of our ‘integrative’ treatment approach – if I were to end up in hospital on intra-veneous steroids I wouldn’t be eating Sally’s healthy meals, wouldn’t be able to exercise, would probably have to stop taking supplements, etc.

And also very importantly, I’d only be able to see family and friends during hospital visiting hours, and my time with Saskia would be limited – there’s only so much time she would tolerate in a hospital ward (or be tolerated in a hospital ward!).

In summary, the risk of colitis and the negative impact this could have on everything else we were doing, both in terms of my ability to fight the disease and my quality of life, seemed to outweigh what looked like a very slim chance of a response. So after a lot of thought we decided to say ‘no’ to Ipi.

This was an incredibly difficult decision to make – throughout life you get used to the idea that if you get ill, you go to the doctor and they give you something to make you better. To actually walk away from a ‘conventional’ treatment option like Ipi (despite all the risks) and say ‘we are going it alone’ with diet, exercise, etc, was incredibly unnerving. Rationally we had been through all the pros and cons, and so had faith in our decision – but that didn’t seem to make it any less daunting.

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Life After Ipi

So that was it – back home from the hospital to fight this monster ourselves, with our regime of exercise, diet, relaxation, supplements, etc.

Since then life has certainly had its ups and downs.

While our integrative regime initially went well, we soon discovered the magnitude of exactly what we had taken on – fighting cancer had suddenly become a full time job. It wasn’t long before we were struggling with the time demands of shopping for and preparing fresh meals, juicing, walking, trying to fit in relaxation, etc. On top of the everyday demands of trying to manage a baby, a house, and the rest of everyday life, we found ourselves a little over-committed.

My previous treatment regime of sitting on the sofa eating scotch eggs and chicken and mushroom slices had certainly been less work, and definitely more enjoyable – although probably not offering as much towards the fight against the cancer.

While on the subject I have been amazed at the amount of admin that having cancer involves. Endless forms, e-mails between hospitals, appointment letters and planning, phone calls between hospitals, prescriptions, etc, etc. It has been truly incredible.

Fortunately just as we were reaching our wits end, we had a week long break in the Lake District, staying in a lovely cottage just outside Keswick with my Mum, Step-dad and Sister. This gave Sally and I a chance to have a bit of a rest, with all the extra pairs of hands to help look after Saskia. I personally didn’t manage to do much walking or photography, mainly due to tiredness – but we had a nice break, with plenty of good pub meals, a boat trip, and time to relax.

Unfortunately towards the end of the holiday I started to suffer with pain in my left arm (which we put down to nerve damage from the chemotherapy), and the pain in my back increased considerably, leaving me in quite a lot of discomfort. To compound matters I also started to suffer more and more from fatigue. By the time we were back home I was pretty much exhausted, and in significant discomfort if in any position other than lying on the bed.

And that has been the story up until now. The last few weeks have been very difficult – between the fatigue and back pain most days have been spent lying on the bed, in a half asleep stupor, watching endless episodes of Frasier, Futurama and the Simpsons on obscure Sky comedy channels (but not Friends, because Friends is rubbish, despite the fact that it is on ALL THE BLOODY TIME). The consensus of the doctors is that the physical and mental exhaustion is a side effect of the brain radiotherapy. I have to admit I thought I had passed the window for those side effects, but evidently not.

The consensus of those around me (ermm… mainly Sally) is that I have also been suffering from a little depression. I can’t say I was really aware of this myself at the time, but I can understand where she is coming from – it seemed to coincide with the period when I felt most mentally fatigued (obviously all that Frasier wasn’t doing a very good job of keeping my spirits up – perhaps I should have been watching Friends after all!). Looking back I can certainly say that over the last few days I have felt mentally more ‘with it’, and Sally seems happy that I am returning to my normal cheery happy-go-lucky self (actually I’m not sure she would go that far!).

Despite spending most of the last three weeks semi-comatose on the bed, an awful lot has been happening in terms of treatments and hospital appointments during that time. Last week on Friday I had radiotherapy treatments at Canterbury Hospital on my arm and back to try and help with the pain (yes, that’s right – it turns out the pain in the arm wasn’t nerve damage, but spread of the cancer to the bone in my arm). Excitingly this involved me getting my first three tattoos – they do a ‘CT planning scan’ beforehand to see the areas they need to target, and then they tattoo you in order to make sure that when they actually come to do the radiotherapy they are targeting the right place.

They give you a choice of what you want – so I went for an anchor, an England flag, and a big lions head. Obviously I am lying – all they did was tattoo three tiny dots on me. One on my arm, and two just above my trouser line, both of which I am currently too fat to be able to see without the aid of a mirror (not the arm, I can see that one – I’m not that fat, yet).

So far I think the radiotherapy has had some benefit – although like with the brain radiotherapy they tell you it can actually make the problem worse for a week or so. But so far it’s not been too bad, and I would say things have improved slightly. So I’m looking forward to next week when I should feel the full benefits.

I also have big news on further treatments – we have been to see another doctor at St Georges Hospital in Tooting, who specialises in both melanoma (among other cancers) and the immune system (anyone watching may have seen him on Newsnight on Monday and Tuesday nights). Given that I have melanoma, and an auto-immune condition, we thought he was worth a visit. So we have been to see him a couple of times, and he has prepared a new treatment plan for me, consisting of about four different medications.

After making that decision to ‘go it alone’ with the Ipi decision it is slightly strange to be back in the world of ‘conventional’ treatments, but it seems what he is offering poses significantly less risk than Ipi, and with hopefully a better chance of pay-off (although as with all these things, the typical response rates are not great). So I am due in hospital on Friday for another course of chemotherapy (but a different drug to last time).

That is assuming I can get there – today I managed to put my back out even more than previously, trying to pick up a towel from the bed, and so have spent this afternoon and evening lying on the bed, even more immobile than usual. So here’s hoping I am mobile enough on Friday to get in for treatment.

Before I finish I want to say my usual thank you to all who have sent messages of support over the period since my last blog. I know it’s been a long time, and it’s difficult for people not knowing what’s going on when I don’t write on here. And I’m sorry that recently I haven’t been replying to those messages, phone calls, etc – it’s not been because I didn’t want to, or because I don’t appreciate them – it’s just because, frankly I have been absolutely exhausted and not really up to it.

Right, I think I’ll leave it there for now. Now, can I make it to the bathroom without collapsing… tune in next time to find out.

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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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Radiotherapy, done…

So yesterday I completed my course of radiotherapy – and the good news is that so far it doesn’t seem to have turned me into a withering wreck.

To be honest I would struggle to isolate many side effects from it at all. Although it has to be said there is a lot going on with my body at the moment (chemo, steroids, painkillers, the disease itself) so it’s difficult to know what’s what. Also I was told that the action of the treatment itself continues beyond the last dose, so there is still time for things to develop.

All I can say so far is I have not really felt any worse during the treatment than prior to it, and probably actually better.

Which does raise a small question in my mind about the timing of the course. It was decided to wait until the brain mets became symptomatic before treating them. Part of that decision seemed to be based around not wanting to give me the side effects of a course of radiotherapy while I wasn’t showing any symptoms (managing quality of life basically). But by far the biggest impact on my quality of life has been spending three weeks (and counting) with impaired vision – it’s affected pretty much everything I do.

Having got through the treatment relatively unscathed (so far), I just wonder if we had started prior to that first big headache three weeks ago, could the vision problems have been avoided?

As I have said before, the doctors at the Marsden who made that decision have the knowledge and experience to base these things on – not me. And I’m sure there was more to it than I fully comprehend, so I don’t want to sound critical. But I do seem to be tolerating the treatments well (both chemo and radio) so when I next see them I might just encourage them not to be so gentle with me!

The plan now is that I get a ‘week off’ treatments (theoretically to recuperate from the radiotherapy) before it’s back to London next Thursday for a scan to assess the chemo response, and an appointment to discuss where we go from there (more chemo, or try something new). If we go for chemo, that will be administered on the Friday.

I wasn’t initially keen on the ‘week off’ idea – I just wanted to get on with it. But to be honest, it will be nice to focus on other things for a while (or ‘focus’ as much as my eye will allow – har har!).

Aside from hospitals, treatments and cancer, then…

Sally and I decided to celebrate the end of the radiotherapy by going out last night for a meal and a film – our first night out since February. Saskia thought she would throw in a little spice with a tricky bedtime routine – leaving us standing by the door, one shoe on, one off, wondering whether to stay or go. Fortunately she quietened down, and was left in the capable hands of my Mum.

So we had a lovely evening in the end. Thanks to steroids I managed to eat an eye watering amount of food, followed by seeing ‘Salmon Fishing In The Yemen’ (which we would thoroughly recommend).

And in exciting other news, we have booked tickets for Stewart Lee’s latest stand up show in Tunbridge Wells in June. Which I am very much looking forward to – especially as his DVDs helped cheer us up during the early days of my diagnosis. It’s nice to have dates like that on the calendar, after three weeks of mainly going no further than Tesco.

Having said that, I did go to see Saskia swimming on Tuesday, in her new and very posh Monsoon swimming costume (no photos allowed in the swimming pool obviously – thanks Daily Mail). She wasn’t on her best ever swimming form, primarily occupied with drinking the water, but it was still fun to go along nonetheless.

And now for some news I am disproportionally excited about – we have ordered Saskia some sunglasses! Check them out…

Saskia’s shades

I realise this might sound ridiculous, but there are two genuine reasons…

Firstly, she seems to really hate having the sun in her eyes – she will very deliberately squirm away from direct sunlight.

And secondly, whilst obviously very lucky in most ways to be my daughter, the downside is that she inherits most of my risk factors for melanoma. Now melanoma can (rarely, but sometimes) begin in the eye – after my primary diagnosis I was advised to always wear sunglasses in the sun.

So there is some kind of sensible rationale to it – protecting her eyes from UV light. And as a happy coincidence she will look the coolest baby in town! I will be sure to post a photo of her sporting them when they arrive.

Ok, so in practice we know she won’t wear them and will take them off every three seconds, but you have to try!

To round off this post then, we’d like to give another big thank you to Sally’s work colleagues, who recently competed a sponsored swim for our benefit, and dropped round several boxes of baby provisions. We continue to be very moved by the efforts people have gone to on our behalf, and the generosity they have shown.

Here’s a picture of Saskia sorting out her new supplies…

“What? Alphabetical order?! Like Daddy’s CDs?!”

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Therapy?

This weekend we were supposed to be off to Croyde (in Devon), to spend the week in a cottage with Sally’s family, and partake in a bit of (attempted) surfing.

When I was diagnosed as ‘relapsed’ a couple of months ago, and began suffering with my back, I adjusted my expectations to the fact I might not be able to do much surfing – but decided instead that I’d spend the time trying my hand at surf photography instead.

Only my ‘brain situation’ has put paid to all that. We’re not in Devon – I am sat in my usual spot (living room, right-hand sofa – with no surf or surfers to photograph). Which is a shame, but unfortunately representative of how hard it is for us to plan anything with any confidence at the moment. But that’s life for now – we just have to roll with it.

So anyway, moving on…

I had my third radiotherapy session yesterday. The last two sessions (since my last post) have gone well, and I haven’t been feeling too many side effects – prior to today just the odd twinge in my head, and I did struggle to stay awake through a film yesterday evening, but that was about it.

Today I have felt a little tired, and had a bit of pressure in my head this afternoon, which seems to be subsiding now – my vision remains unchanged. I have been advised that the radiotherapy itself can make things worse before they get better – so in light of that, I’m relatively happy with my progress so far (when I first drafted this paragraph this morning it read ‘very happy’ – this afternoon’s headache has forced me to edit to remove some of the gloss).

Regarding the actual treatment, I was planning on writing a little about the whole experience, and was hoping I might sneak a photo for the blog. Obviously there are strict rules about what can and can’t be photographed in hospitals, so I thought I might just about get a photo of a ‘radiation on’ sign if I was lucky. However the hospital staff were very obliging, and helped out with the photos (within the rules obviously) – so a big thank you to them for that.

The first session then (Wednesday) was preceded by a chat in the ‘quiet room’ with one of the doctors, covering the procedure, potential side effects, answering my questions, etc. Following this, I was called into a fairly big room, containing a large machine called a ‘linear accelerator’ (shown in the photo below – and described by my sister as looking like an enormous food mixer), and asked to lie on the bench, with my head in the clear plastic headrest. No pillow unfortunately – it seems with radiotherapy comfort is a secondary consideration to accuracy (probably a good thing!).

My latest ally, ‘Mr. Linear Accelerator’

Once lying down, the bench was moved into position under what I am going to call, accurately or not, the head of the machine (the big round bit at the top). What then followed was lots of measuring, prodding, and very precise lining up of my head – the three staff quoting various measurements and medical terms for bits of my head and brain. I knew at the time there were lasers aiding this process, but it wasn’t until afterwards when I saw the photo below that I realised just how ‘Star Wars’ it looked. Once in position my head was taped into place to keep it still, and two black dots marked on my face so that they could see if I moved out of alignment with the lasers.

At this point, with all their measurements taken, the staff had to go away for a while to calculate the dose of radiation required. My understanding is that the dose is predetermined, but they have to calculate how much effort the machine has to put in to deliver that dose, based on the measurements of your head. So I was left alone for ten minutes or so, staring at the same dimly lit ceiling tile, trying to keep my head as still as possible. After a while I felt like I was beginning to hallucinate, seeing various patterns coming towards me out of the ceiling tile – which was interesting.

‘Ben And The Machine’

Eventually the staff returned, checked I hadn’t moved, and explained they were ready to begin the treatment. At this point they left the room, and the head of the machine rotated round to the left side of my head. There was some beeping, followed by a buzz while the radiation fired for what seemed like twenty or thirty seconds. After which the head of the machine rotated round to the right side of my head, and repeated the beeping and buzzing as the radiation fired from the other side.

I’m not really sure if I feel any genuine sensation when the radiation actually fires – each time I have had a vague perception of a pink light, and smelt a hint of a sterile, cleaning fluid type smell in the top of my nose. Whether these sensations are genuine, or imagined, I really have no idea – with my head taped in place I can’t tell if there is actually a pink light in the room or not!

The sign outside the room, just as the ‘magic’ was happening…

Once both sides were done, the machine returned to its normal position above my head, the staff returned, and I was free to leave. As I left the hospital I really couldn’t decide whether I felt ‘normal’ or not – I don’t really feel ‘normal’ at all at the moment given my vision, etc, so it is difficult to distinguish any immediate effects of the radiotherapy from my current feeling of being out of sorts generally.

The subsequent two treatments were an altogether quicker affair, as there was no need for the pre-treatment chat, measurements or dose calculations. It’s just turn up, get in the machine, get zapped, and go. I do find it a strange form of treatment — I’m used to hospital visits involving being more actively ‘interfered’ with (blood tests, operations, taking medications, having cameras inserted into places you don’t want cameras inserted, etc). It seems odd to just turn up, get in a large machine which buzzes at you, and then leave – but there you go, life recently has been full of new experiences.

We even took Saskia with us on Thursday – she proved a hit in the waiting room, brightening the place up, raising plenty of smiles, and playing some tunes for the other patients on her ‘My Baby Piano’ app on my phone.

After the treatment we managed to go into Canterbury for a few bits and a bite to eat in Tiny Tim’s cafe. While in town we saw my Macmillan Nurse Specialist (who has been an immense support since my initial diagnosis with stage one melanoma five years ago) manning a stand in the local shopping centre. This week happened to be ‘Sun Awareness Week‘, and as a result she had the unenviable (but incredibly important) task of trying to hand out suntan lotion and educate passers by on the dangers of sun exposure – while standing in the rain. I salute her commitment.

Although she did liken my current appearance to that of a ‘hamster’, so maybe I’ll reserve judgement… (I say that in jest – to be fair it was an entirely justifiable comparison, and I am rapidly progressing along the well known ‘animal / obesity’ scale towards ‘hippo’).

So there we go – that’s my take on radiotherapy. I think I will leave it there and post this now, as this post has been in draft form for about three days, and each day I have to go back and amend ‘today’ to ‘yesterday’, ‘no headache’ to ‘headache’, etc. So I am going to hit post quickly before anything else changes… now.

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Up and Atom!

Just a quick update to let you know that we heard from Canterbury Hospital yesterday afternoon – my radiotherapy has been brought forward, and I start tomorrow afternoon. The treatment will consist of five appointments, ending next Wednesday (I get a nice three day break due to the bank holiday).

On balance I am pleased to be going in sooner rather than later (although with a touch of trepidation). This morning was spent nursing another headache (not too severe, but there nonetheless) so it feels good to be getting on with something.

I’m not entirely sure what to expect in terms of side effects from the treatment – I’ve been told everything from “you’ll be completely wiped out” to “you’ll tolerate it fairly well”. I’m going to be positive and expect to lean towards the latter – I don’t usually suffer too much with side effects. In fact I tend to think they can be psychosomatic as much as anything – if you expect to get them you probably will (if I’m a withering wreck by Friday you can all enjoy me publicly eating those words!).

Either way, I have set Sally up as an author on the blog, so if I am not feeling up to posting she can keep you all updated on my behalf. Obviously her prose won’t be as glittering or flowing as mine (I have always been the artistically gifted one in the relationship*) – but she is fairly adept with basic sentences, so you should all be fine in her hands.

Right then – I’m still planning a Saskia post before I go in for treatment tomorrow, but wanted to get this news out there first.

[* Just for the record, this is a complete lie]

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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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Treatment Update

Evening all.

Just a quick update to let you know what’s happening with my treatment – we finally have a plan (well, somewhat!).

So we heard from both the Royal Marsden and Canterbury Hospital today – I will be having the radiotherapy locally, so as to save traveling to London day after day. In all other aspects the treatment will be the same between the two hospitals, so this makes sense – especially given the predicted side effects.

However, before we can begin in earnest I need to have an appointment with the consultant at Canterbury, so he can plan the treatment properly. Early indications suggest it’s all a bit more complicated that just turning up and having your head irradiated (which is actually very reassuring). They have to look at the scans, then calculate power, angles, and other things I don’t fully understand right now. Apparently some patients even have to have a special mould made for them before they can start (I expect they will probably want to do this for me to protect my incredible looks).

So I am due in on Thursday to begin that process – then the treatment itself should begin shortly after.

In some ways I was hoping it would be earlier – I guess when you have cancer it’s natural to want to hammer it as hard and as quickly as possible. But on the other hand, it is a bit of a reprieve – as I explained previously, it was the timing of all this brain stuff that was most upsetting. I had a whole list of things I wanted to do before I found myself wiped out and too tired with this treatment, so at least I now have a few days to get a move on.

While we wait then I continue with the steroids and painkillers to keep the symptoms under control. Speaking of symptoms, no real changes there to report – occasional head pressure still (but under control with painkillers), vision still rubbish (no better, no worse).

Today I actually left the house for the first time since Thursday – we decided after the last few days we would treat ourselves to lunch in town (ASK again). It was so nice to get out, and away from either the bed or the sofa, where I have almost exclusively spent the last few days. Although I did feel like a complete liability trying to navigate pavements, roads, traffic, lamp posts, and pedestrians (with umbrellas – the worst kind of pedestrian) with my limited vision.

When sat in the living room my vision now means I have to sit on the right-hand sofa, so that my good eye faces into the room. If I sit on the left-hand sofa it doesn’t really feel like I am sat in the room – my field of vision mainly encompasses the cupboard under the stairs (which while a nice cupboard, is hardly the highlight of the room) and I hear ghostly voices of the people sat to the right of me, who I can’t actually see. Which is very weird – I hope this sorts itself out soon.

Before I finish I just want to say another couple of thank yous…

Firstly to Sally, who decided yesterday that she would cheer me up by taking herself into town (in the pouring rain) and surprising me with some new clothes. She chose very well, every one was a hit – highlights included some nice shirts, and a Guns N’ Roses t-shirt.

And secondly to my Mum, who is still here and helping us out with Saskia, around the house, and just generally looking out for us. With me currently next to useless (or worse, a liability) we just couldn’t do this without another pair of hands.

Right, that’s about it for now.

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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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