Monthly Archives: May 2012

Vital Statistics

So week one of our new regime is done. Rather than bore you with reams of text this time I thought I’d just list a few key stats from the last week…

  1. Times out walking in the park – 10 (started Monday)
  2. Distance walked – 25 km / 16 miles
  3. Times thought might get beaten up in the park – 1 (sinister things have happened in that park)
  4. Times beaten up in the park – none (hurrah, what a lovely, idyllic park!)
  5. Cuts on feet from deciding to walk in flip-flops – 3
  6. ‘Treat’ meals – 1
  7. ‘Healthy’ meals – the rest
  8. Times wanted fish and chips – lots (depending on wind direction you can smell the nearby chip shop from our road / garden)
  9. Times had fish and chips – none (boo!)
  10. Meditations completed – 5 (missed a couple with Saskia teething)
  11. Juicers purchased – 1 (arrived yesterday, assembled this morning)
  12. Juices consumed – 1 (melon, blueberries and kiwi – very good)
  13. Steroid dose – 6 mg (originally 16 mg, reduced by one more tablet this week)
  14. Headaches – none
  15. Back pain – 3 out of 10
  16. Guns n’ Roses albums listened to – 3 (not nearly enough)
  17. Arguments with Transport for London as to whether being told you have brain cancer is an acceptable reason for forgetting to log in and pay the congestion charge that evening – 1 (apparently it’s not – thanks for that TFL, what a compassionate bunch you truly are)

There we are then – the upshot of all that (apart from TFL’s ‘contribution’ to our cause) is that I am feeling good and positive, both physically and mentally.

Hanging out in the pub

A few weeks ago I couldn’t have imagined walking sixteen miles in five days, let alone feeling much better for it.

And mentally it feels like we are taking control of the situation – doing everything we can from our side, while the doctors do their part.

Right, I promised not to bore you so will leave it there for now. Except for a little picture of Saskia taken yesterday (click on the image to see a larger version). Incidentally she celebrates being nine months old today – happy nine months to 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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Long time, no write…

Hi all,

Apologies I haven’t written for a while. After a fairly active period on the blog with all the brain / radiotherapy news, I decided for my ‘week off’ treatment that I would focus my energies elsewhere for a bit of variation (more on that later). And since Thursday I just had to take a break from thinking about cancer and treatments for a few days.

Obviously most of you will have seen Sally’s post on Thursday – yet again another disappointing trip to the Royal Marsden. Since my ‘relapse’ I am yet to walk out of those doors having heard the ‘good’ news option – it always seems to be the ‘bad’ news. Next time I am considering just staying at home, assuming it’s bad news, and saving ourselves fifty pounds on train fare and a whole lot of waiting around.

In truth, while obviously we were hoping for the best, it was not a complete surprise that the chemotherapy was not deemed to be effective. The doctors at the Marsden typically state the positive response rate to be only ten to fifteen percent of patients, and then usually only for a limited time.

What was unfortunate, and made the news more difficult to take, was a bit of a mix up prior to seeing the doctor. I had a provisional appointment booked for Friday to have the chemotherapy if we were going ahead. While waiting to see the doctor I was approached by a nurse, told I was having treatment Friday, handed two blood forms saying ‘pre-chemo’, and told to go downstairs for a blood test.

“Result!” I thought, “that means the chemo was working, doing something at least”.

For the first time in a while I thought I would be leaving the hospital with some positive news, and found myself in the seemingly odd position of being ecstatic about the prospect of receiving chemotherapy.

Then suddenly it dawned on me that maybe the doctors hadn’t reviewed my scans yet, and the nurse had just acted on the basis of my provisional appointment. I quickly tried to temper my excitement, and decided I wouldn’t believe it until I heard it from the doctor. But it was difficult not to have some level of hope – thinking to myself “I’m sure they would have checked everything properly”.

Going through countless scans for cancer and waiting for results have generally been the most harrowing times of my life – it’s pretty indescribable. After a scan I find myself analysing in great detail the attitude of the staff towards me for signs of pity; in waiting rooms I wonder if I am being left until last because they need a senior doctor to break bad news to me; and so on.

What I’m trying to get across is that when one spends so much time trying to read things into things that don’t actually mean anything, it’s very hard not to get excited when someone explicitly says to you, “you are having treatment tomorrow”.

Anyway, as you can probably guess it was just as well I did at least partially prepare myself for bad news to follow – as it turned out I wasn’t to have the chemo after all, and had therefore had yet another needle stuck in my hand for no reason whatsoever (much of the time I feel like a pincushion nowadays).

So that wasn’t the best start to my chat with the doctor – I was obviously disappointed, and angry that such a mix up had been allowed to happen in the first place. But these things happen unfortunately.

Putting that incident aside, what they told us was this – the disease has progressed despite the chemotherapy. Not dramatically so, but enough to not continue with that particular treatment. Which leaves us with two options:

1 – ‘Symptom management’ – two words no patient wants to hear.

2 – Treatment with Ipilimumab (or ‘Ipi’) – a new-ish drug, and what is known as a ‘second line’ treatment (the chemotherapy being a ‘first line’ treatment).

We have been aware of Ipi as a second line treatment option for a while, and it has generally been accepted that if the chemo didn’t work then Ipi was the automatic next step. What took us by surprise in Thursday’s appointment was that I was strongly advised away from this option, and towards the ‘symptom management’ option.

Ipi works by boosting the immune system, to try to help it to fight the cancer more effectively. Now like most anti-cancer drugs it has side effects, and (like most drugs aimed at fighting melanoma) not particularly high response rates. One of the side effects of Ipi is colitis – which I have already, due most likely to an overactive immune system (hence I am on immuno-suppressive medication to manage the colitis). So in a nutshell, the position of the doctor we saw last week is that Ipi represents too great a risk to my health and ‘quality of life’, given my existing colitis, for what he sees as the questionable chance that it will be effective.

Which was, as you can probably imagine, all pretty uninspiring to hear – and leaves us with an awful lot to think about. I find myself in a catch twenty-two situation – with one medical condition that requires suppressing the immune system, and another for which we want to boost it.

In truth, again perhaps we should not have been entirely surprised at the negativity over the Ipi route – I have been aware that the doctor we saw has had reservations about Ipi as a potential treatment option for me from the very beginning. However, we have had more positive discussions regarding Ipi with the other doctor who jointly leads the melanoma clinic – his take last time we spoke was that colitis was the lesser of two evils, and we would have to take the risk and manage any colitis flare up. Unfortunately my situation has changed since that conversation – at the time we didn’t know that the cancer had spread to the brain. So it could be that his opinion would now fall in line with the doctor we saw last week, and he would warn me away from Ipi too. But either way we would obviously like to hear what he has to say – unfortunately he won’t be available to discuss this with us until next week (having had the nerve to go on holiday at such a critical time in my treatment!).

However, it doesn’t look like this will hold us up significantly if we do decide to go for Ipi. It isn’t yet (as I understand it) freely available on the NHS as a licensed treatment – so the Marsden have to make an application for funding, which can take two to three weeks. They have been kind enough to initiate that process immediately, to minimise any hold up should we decide to go for it. Which means that we have time to take over our decision, and can meet with the other doctor once he is back, all within that two to three week window.

So there you go – that’s where we are right now. It was obviously a disappointing meeting – but yet again we have picked ourselves up, as we are becoming very adept at doing (thanks to plenty of ‘opportunities’ to practice!). I’d be lying if I said there hadn’t been some hard moments over the past few days, but we decided to put starting the Ipi research and decision on hold for a few days (given the lack of any immediate time pressure), and throw ourselves into positive and enjoyable things to keep us in good spirits – and I would say we have bounced back pretty quickly.

What I have said before in this blog still stands – we are not giving up, ever!!! There is always hope, and dwelling on negatives and what might happen before it does happen will only compound matters. Sally and I promised each other at the beginning of this that we would just deal with what is immediately in front of us, and that is what we’re doing.

Also, I don’t want to say too much about it at this point in time, but there is a another avenue we are exploring. It might come to nothing, but it’s nice at this point in time to feel we have other options.

And in a way, this appointment on Thursday was perhaps the kick up the arse that we needed to make some other big lifestyle changes to give myself the best chance of beating this (again, more on that later).

So that’s all I’m going to write for now – I had intended to write plenty more, about what we’ve been keeping ourselves with busy since my last post, the above mentioned lifestyle changes, my general condition (not bad, just so you know), etc. But I have already written nearly fifteen-hundred words, have run out of time for today, and want to get this post out there quickly so you know we are ok, and I’m not spending my time trying to throw myself under buses or down any wells.

As always, thanks to everyone for their messages of support over the past few days – it really does make a massive difference.

I will post again soon.

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Today’s news…

Hi all. It’s Sally here, sat on the train next to Ben after a long long afternoon at the Royal Marsden. As you’ve just probably guessed from the fact that I’m writing rather than Ben, we didn’t get the positive news we were hoping for.

The CT scan that Ben had earlier today showed that the cancer has progressed, which means that the chemo hasn’t been effective and we won’t be carrying on with it. We now have another big decision to make about where we go from here in regards to treatment.

I won’t go into more detail – Ben will be posting in the next day or two when he’s had a chance to get his head round this new information – but we just wanted to let everyone know the basics of what has happened today.

We’re obviously gutted, but not giving up hope yet! Huge thanks to you all for your thoughts, messages, vibes and prayers.

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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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New Page – ‘The Enemy’

Just to let you all know I have added a new page to the blog, entitled ‘The Enemy’.

I won’t write too much about it here – but the aim is to try and raise a bit of awareness around prevention and early diagnosis, through a combination of factual information and my own personal experience.

Melanoma is an easily preventable and, if caught early, very treatable disease – so a little bit of awareness can go a long way, and with any luck hopefully help spare other people from having to go through this ordeal themselves.

The new page can be found at the top of the blog, next to the ‘About Me’ page.

Check it out – you never know, it might just be of use to you or someone you know. If someone had shown me this page five or six years ago, there is a chance I might not be in this situation.

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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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One down, four to go…

Evening.

Just a quick note to let you know that my first round of radiotherapy went well – so far no noticeable side effects. I’ll try and write more tomorrow about what the treatment actually involved.

In the meantime I just wanted to say thanks for all the messages of support I have received recently – both in preparation for today, and also over the last couple of weeks. I’m afraid I haven’t yet been able to reply to most of you – but rest assured I read them all, and they mean a lot to me.

‘Round two’ tomorrow then…

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They call her ‘Saskia Two Teeth’…

'Saskia Two Teeth'

As promised then, I thought I’d update you on Saskia’s latest news, and share a few more photos.

So as the title of this post suggests, it turns out that while we thought she was just growing one tooth, she was secretly growing a second ‘stealth tooth’. Only a few days after the first appeared, we noticed another one in there, quietly sat alongside. Clearly now she has started, she is keen to get going.

Of course, being the proud owner of teeth also comes with immense responsibility – namely, teeth brushing. We were relieved to discover that this is an activity she actually seems to quite enjoy (I wonder if the same can be said for the cat? I am yet to take the vet’s advice and attempt to brush his teeth, mainly because I anticipate losing a significant amount of my own blood).

Saskia continues on her intrepid journey into food exploration, broadening further her culinary horizons. We are still yet to discover anything that she won’t actually eat, although we suspect that she might not be that keen on egg (Daddy says just wait until you try your first scotch egg… mmmm… scotch egg…). Spaghetti carbonara was a recent highlight, in terms of taste for her, and comedy value for us.

'The Spaghetti Incident?'

Beyond teeth, her other big news is that in the last week or so she has mastered the art of sitting upright unaided. She has always been quite physical, chucking herself around left, right and centre, which never really lent itself to sitting – but she now seems to have got the hang of it. We think maybe being in disposable nappies for a few days might have made a difference, giving her a more stable ‘platform’ (or to put it another way, ‘arse’) – as opposed to the round and bulky reusables she normally wears.

This new found skill has opened up exciting new interactions with us, her toys and her surroundings – which has been fascinating to watch.

Sitting pretty

She is still agonisingly close to crawling, but not quite there yet. She continues to get on her hands and knees, or hands and feet, and rocks back and forth – clearly raring to go. We don’t think it will be long before she makes that final connection, and we have to make an emergency dash to Mothercare to buy stair gates.

Despite not quite crawling she is still fairly mobile – place her in the middle of the room, on her playmat with lots of toys, walk away for two minutes, and when you come back there is a strong chance you will find her on the doormat in the corner of the room chewing a shoe.

"Hi, Oncology? I need to talk about my Daddy..."

She has also been making good progress at her weekly swimming class. She will now hold on to the ‘noodles’ (long cylindrical floats), with one under each arm, and float all by herself, without being held by an adult. Most weeks I go along to swimming and watch, although I missed it this time – hopefully next week I will go.

Right, that’s about it for now, other than to reiterate what I said in my first ‘Saskia’ post – which is that while I dearly wish the circumstances were different, I am thoroughly enjoying having the opportunity to spend so much time with her and Sally as a family. Seeing her grow and develop is such an amazing experience, and she contributes no end to keeping me positive and in good spirits each day.

One more photo for you (followed by a postscript)…

Saskia with Daddy

P.S. A few posts ago I mentioned Sally’s phone was broken – she now has a replacement (similar to Saskia’s model in the picture above actually – it has wheels and Sally pulls it around by a piece of red string). So she is now fully contactable again via her usual mobile number.

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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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