Monthly Archives: April 2012

by | April 30, 2012 · 11:59 pm

Why me?

Evening all – I thought it was about time I gave you an update on the last few days…

In truth, they have had their ups and downs. I have been struggling to adapt to my lack of vision – becoming increasingly frustrated with my general loss of function and coordination. I seem to only be able to operate at half the pace I used to. Meanwhile, general household life continues around me at its usual tempo – baby, meals, tidying, shopping, etc – leaving me feeling at best like a spectator, and at worst just in the way.

Each day I wake up with a list of things I’d like to achieve – and in most cases achieve very few of them. My reduced dose of steroids lasted all of a day – Saturday morning was spent lying in bed with a headache. So I went back up to a dose midway between the new and previous dose, which seems to be keeping things stable for now, and is at least a reduction of some kind.

The lowest point came Friday afternoon, as I walked down our street, and straight into the wing mirror of a parked car – I felt like an idiot. So I continued walking along, smouldering to myself as I contemplated what had just happened.

A few paces later, I walked straight into the wing mirror of a parked van. Needless to say this second incident did nothing to alleviate the frustration and embarrassment of the first.

It didn’t hurt that much (physically at least), but it hurt my pride. For someone who generally considers themselves a pretty coordinated person – enjoying the odd turn on a mountain bike or skateboard – the sudden inability to navigate a quiet residential street without walking into successive parked vehicles is quite frustrating.

The worst part of it was (and I’m ashamed to admit this, but this blog is supposed to be all about being honest) is that I found myself asking Sally why she didn’t see I was about to walk into the van. Which is obviously ridiculous – if I haven’t yet figured out what is in my vision and what isn’t, then how on earth is Sally supposed to know!? I knew it was wrong straight away, and apologised immediately – but still felt bad that I had let my frustration get to that point.

So undoubtedly the last few days or so have had their moments. However, I woke up this morning determined to try my level best not to let this get me down or feel sorry for myself. Things could be worse – I still have most of my vision, and I still have all my other senses and faculties unaffected (at least no more than normal!). I am endeavouring to manage my situation, and when it does go wrong, laugh instead of getting angry. As I discussed in my very first post, keeping a positive attitude is only going to do me good in this fight – getting down and negative will just compound my problems.

Which brings me onto something I have been wanting to discuss on the blog for a while – maintaining a positive outlook. But first of all, I want to share a picture with you all, taken from the cover of the Royal Marsden ‘Progress’ magazine. Now for the celebrity / royal fanatics out there, the picture does contain Kate Middleton (or whatever her married name is now), but I want you to look at the other person in the picture – yes, sometimes there are other people in pictures of her too – and no, I don’t mean William, or even Pippa Middleton…

I first saw this picture about six weeks ago – I was in the CT scan waiting room of the Royal Marsden, waiting to have a scan of my head to find out if there was any cancer in there, and therefore whether or not I could go on the clinical trial previously mentioned. I knew that the next day I’d be back in the hospital, either being told I had the opportunity to receive what could be the next big thing in melanoma treatment – or that no, I wasn’t allowed to have that, and by the way there is cancer in your brain (we all know what happened by now).

So it’s fair to say there was a lot riding on this scan, and I felt suitably tense. As I sat there nervously waiting to be called, my eyes fell upon the picture on the front of this magazine – and suddenly my own problems didn’t feel so important any more.

I was looking at a picture of a child… a child that didn’t look a great deal older than Saskia… a child with cancer…

I’ll be honest, the picture made me cry, due to a whole range of emotions. I felt sadness, as I pictured that child being Saskia, reaching out to me, and imagined how terrible it must be as a parent to see your child, the most precious thing in your life, ill with cancer. I felt anger and despair, that anyone gets cancer, but especially a child.

Most of all, looking at this picture put my own situation in perspective – I resolved that I was not going to feel sorry for myself, or indulge in self-pity. Having cancer is undeniably scary, and the treatments themselves are often scary – but I thought if that little child has to go through this ordeal, then why shouldn’t I have to?

It’s a bit of a cliche, but unfortunately cancer doesn’t pick ‘good’ or ‘bad’ people, or just land on people who ‘deserve it’. Twice recently I have heard cancer patients (one old, one young) asked if they wondered “why me?”. In both cases the response was the same – “why not me?”. As much as we’d all like to construct a rational case as to why some people get cancer, you just can’t. Cancer isn’t rational, or logical – it just happens.

The picture above also brought home to me that in actual fact I have a lot to be thankful for. Sure, I don’t want cancer (wish I could find the receipt), and I’m statistically unlucky to get it at my age – but still, I could have been statistically unluckier (i.e. younger). I have had some amazing opportunities in life – a fantastic family; great friends; an amazing wife and wedding day; and now the most magic thing of all, Saskia.

Sally and I have been so lucky with our little girl. We were blessed to discover we were going to be parents only a month or so after making the decision to ‘go for it’ (at least there is one part of me that’s healthy!), and were fortunate enough to have a relatively uncomplicated pregnancy. It’s not lost on me that we were very lucky – and given my current circumstances, I am immensely grateful for that.

Now don’t get me wrong – I am aware this might be beginning to read a bit like a “it’s all ok, I’m satisfied with what I’ve achieved in life, I’m off out of here” post. Which couldn’t be further from the truth.

What I am trying to say is that yes, having cancer is crap. But it is so important to remember the things in life that you have to be grateful for – because they are out there. Each of these positive things is another reason to fight, and not to accept this disease – and fighting with your focus on the positive things in life has, to my mind at least, got to be the best way to fight.

Over the last couple of months I’ve had a lot of wonderful feedback, containing words like ‘brave’ and ‘inspiration’ – which has been so very moving and motivational, and has helped me stay positive. However I’ve come across many other people in similar situations (in hospitals, via other blogs, on tv, etc) to whom those words are equally applicable. In fact every other cancer patient I have come across has shown amazing strength and courage, and been an inspiration to me – from people dealing with cancer late in their life, to the little child in that picture having to deal with it so early.

So there we go – apologies this post was a bit of a heavy one, but I felt the time was right to share something that had a profound impact on me, and also pay tribute to the attitude and strength of all the others out there going through similar experiences.

For tomorrow, as a reward to you all for making it through this post, I have some happy Saskia news and photos for you.

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by | April 27, 2012 · 7:53 am

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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by | April 23, 2012 · 10:41 pm

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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by | April 22, 2012 · 9:16 pm

Saskia – now available with teeth…

…or to be more specific, ‘tooth’.

That’s right – a bit of an interlude in all the cancer news now, to let you all know the somewhat happier news that yesterday we saw the appearance of Saskia’s first tooth.

I say ‘happier news’, but Saskia herself doesn’t seem to be all that pleased about it. She has been a bit out of sorts the past few days or so – having trouble sleeping, and showing some of the symptoms of teething – so we had an idea it was coming. It was nice to see it finally appear, to know we had been going down the right direction with all the teething powders, etc.

I did try to point out to her that she was making a bit of a big deal about it, and that in the grand scheme of relative problems, cutting a tooth wasn’t all that bad – but she was having none of it.

I don’t have a tooth photo to show you I’m afraid, as it’s hard enough to get her to keep still long enough to see it with the naked eye, let alone to get a photo. So in the absence of that, here’s a photo from a couple of weeks ago for your viewing pleasure…

High five!

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by | April 21, 2012 · 10:50 pm

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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by | April 19, 2012 · 10:20 pm

That interesting post I mentioned…

I didn’t really expect to be writing on the blog today to be honest. Today was supposed to go something like this…

Wake up, and have a lazy morning. Then in the afternoon Sally and Saskia were due to go to a little ante-natal group party, while I had a quiet afternoon at home, incorporating a lesson from a photographer in how to post process my photos on the computer. So while a nice day, not exactly ‘interesting blog post’ material.

What actually happened bore very little resemblance to that. But before I go into detail I have to explain a bit of background context – some of you will know this already, some not. And I’m not really sure how to put it, so I’ll just say it – the cancer has spread to my brain (boo hiss!).

I actually found this out a while ago, just before I started the blog. In my first post, when I mentioned that I couldn’t go on the second clinical trial ‘due to the location of my cancer’… well that was why. Most clinical trials prohibit entry to patients with brain metastases. I don’t really remember why, and probably don’t want to know. But by agreeing to go on that trial I consented to having a CT scan of my brain, which showed multiple metastases (albeit small).

Obviously this was very hard to hear, and for one reason or another I didn’t really feel ready to disclose this news openly on the blog at that point in time. I’m not really sure why – perhaps I needed to come to terms with it myself first; or perhaps I just felt that this, on top of all the other news, was just too depressing a way to start the blog. Also, at that point I was asymptomatic (i.e. had no physical symptoms of the brain mets). So I decided to hold on to that news for the time being.

Well, as of today, I am no longer asymptomatic – what actually happened today was this…

Woke up at about 6am. By about 6:30ish I had developed a crushing headache on the left side of my head, like nothing I have ever experienced before (although I rarely suffer from headaches). I am already on paracetamol for my back pain, so couldn’t take any more of that – but I remembered that I had some codeine in a drawer, prescribed by my GP a while back in case I had any more attacks of stomach pain (mentioned in my first post). So I took the maximum dose of codeine I could, led back down, closed my eyes, and just waited for it to take effect. Which eventually, it did. After an hour or two the pain started to subside, and I think I dozed for a bit.

When I woke up and tried to get out of bed, I realised that something else was wrong – my vision wasn’t quite right. After much waving of my hands in front of my face I established that I was missing much of the peripheral vision in my right eye. If I held my right hand directly ahead of me, looked at it, and then moved my hand to the right (whilst still looking directly ahead), I only had to move my hand 10 to 20 degrees before it disappeared entirely from view. The same experiment with my left eye and hand showed I could still see my hand in my vision when it was out at 90 degrees, parallel with my shoulder.

I knew at this point that the brain mets were now playing up, and this wasn’t just a headache. We had been told that they could cause swelling and inflammation in the brain, resulting in headaches, vision problems, and possibly causing me to have a fit (an experience I am really not looking forward to). So we decided to phone the doctor at the Royal Marsden. What ensued was a flurry of calls between the Royal Marsden, my GP surgery, and Canterbury Hospital.

I was immediately prescribed steroids to try and reduce any swelling and inflammation. The Marsden also wanted an urgent CT scan of my head, but were happy for me to have this locally, rather than make another trip into London. A few more phone calls later (and a bit of clarification as to whether urgent meant ‘within a week’ or ‘today’) and I was called into Canterbury Hospital at half an hours notice for a CT scan of my head.

So Saskia was collected and sent on her way to her party as a temporary orphan, while Sally and I were kindly driven by a friend (also called Sally) to Canterbury for my scan. After a bit of waiting around, my scan was completed and we were driven home.

We don’t yet have any news on the scan results – they were being sent up to the Royal Marsden, and we are expecting to hear tomorrow. Assuming the scan shows just some swelling, I continue taking the steroids. If it shows ‘anything else’, we take a ‘different route’. I’m not really sure what ‘anything else’ and ‘different route’ involve at the moment.

So there we go. I’m currently sat on the bed, resting, typing, and quaffing steroids, paracetamol and codeine. The headache has mostly gone (or is suppressed by the painkillers), but there is a lingering sense of it. My vision is still not really improved – so far today I have walked into a hospital trolley, our sloping bedroom ceiling, and a door (repeatedly). Also I have stepped on the cat. It really is amazing how inconvenient it is – I keep losing items that are placed slightly to my right, because they just don’t appear in my field of vision.

I am sincerely hoping that I wake up in the morning able to see properly again, and preferably without a skull that feels like it wants to explode – I can do without all that.

Before I finish, I want to write a bit about the decision of whether or not to have the brain scan required for the clinical trial – just for the benefit of anyone reading this who might ever have to make a similar decision. When weighing up the pros and cons of the trial, we discussed this a lot. The Royal Marsden tend to adopt a policy (for melanoma at least) of not scanning the brain unless a patient actually shows symptoms of brain mets (even though melanoma commonly spreads to the brain). Which might sound strange, but everything they do is based on sound logic and reason. I’m not going to try and explain that logic or reason, as I don’t consider myself aware enough and don’t want to risk misrepresenting them.

We questioned whether or not we wanted to know if the cancer was in the brain and to what extent – were we setting ourselves up for another fall? What could be done if it was found? We were warned that if the scan showed anything, I would no longer legally be able to drive. In the end we decided that the clinical trial was ‘the fighters choice’, and therefore accepted the brain scan as part and parcel of the entry requirements.

As it turned out we did get bad news – and it was tough to deal with. However, I am glad we made the decision that we did. Today has been a crap day, that’s for sure – but at least we knew it could be coming, and so were slightly prepared for it. We had already dealt with the news, so today has just involved dealing with symptoms. I cannot imagine how much worse today would have been if we’d had to deal with the realisation that the cancer was in my brain, at the same time as having to deal with the first arrival of symptoms. We knew very early what was up, and were able to act quickly – as were the various medical professionals involved. Another advantage is that the Marsden have a scan from a month ago to compare this latest scan against.

That doesn’t mean this decision would be right for everyone – we’re all different. But I just wanted to offer an insight into our particular experience – an insight which would have been useful to us back when making the decision ourselves.

Finally, some thank yous; to all the medical staff involved in organising and carrying out my treatment today; to Sally for driving us to and from the hospital and remaining on standby should we have needed to go to London; Caroline for being on Saskia standby this morning; to Janine for collecting Saskia, and all the NCT girls for looking after her; and to my Mum for driving up here at short notice to be on standby should we need to go to London tomorrow.

Right, so there we are. I’ve learnt an important lesson today – never promise to make your next post interesting, because you might get what you ask for. In fact I hope my next post is complete and utter tedium – perhaps about the finer points of how libraries organise their books on shelves, and the intricacies of those little labels with all the numbers and decimal places on the spines of the books.

Sorry for any typos or errors – but as I can only half see, I’m sure you will let me off.

P.S. In the midst of our flurry of phone calls this morning, Sally’s phone died (awesome timing!) – she could see she had received some texts, but could not read them. Subsequently this afternoon it appears to have given up the ghost entirely. So if anyone wants to contact Sally please be aware of that. Currently via e-mail, landline, or me are the best options. I will post again when we have it sorted.

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by | April 18, 2012 · 8:44 pm

A little bit of admin…

A bit of a boring and functional post now I’m afraid, concerning the blog URL (web address). In summary, I have decided to get a proper URL for the blog – the new address is…

meandmyunwelcomevisitors.com

(Note – it doesn’t need ‘www.‘ – but will work with or without it)

While the initial motivation for the blog was to keep family and friends informed, it has begun to move beyond this – people have started to pass it on to other family, friends, and colleagues; and it may go on further from there.

Now this is something that I am pleased about. If in the process of writing this blog I can raise awareness of skin cancer as an easily preventable cancer, and very treatable if caught early, then this is a good thing. If as a result of reading this someone remembers to put on the sunscreen, reaches for the fake tan instead of a sunbed, or goes to the doctor to get a suspicious mole examined that little bit earlier, I will have done some good.

So to those who have shared, or want to share, this blog with anyone else, please feel free.

However, in order to protect our privacy (without wanting to get all ‘Daily Mail hysteria’ about it!) I would be grateful if going forward people could distribute the new address shown above.

The old address will continue to work – it will just redirect to the new address. For those signed up to receive e-mail updates these should continue to work as they are.

Thanks to all!

P.S. I’ll try and post something more interesting next time.

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by | April 17, 2012 · 10:43 pm

The day after…

In ‘the chair’

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

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

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

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

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

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

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

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

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

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

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

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

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

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by | April 16, 2012 · 7:43 am

Treatment Day

So it’s treatment day today (first day of my second cycle).

Currently lying in bed writing this on my phone, trying to delay getting out of bed for as long as possible (which is fairly standard procedure for me). Saskia has just started talking to herself in the room next door. I can see her on the video monitor – she seems to be amusing herself in her cot for now.

I feel a little nervous, although not half as much as last time. At least this time I know roughly what will happen, how I will feel during and after the treatment, etc.

It will be a long day though. Got to get the train to London to be at the hospital for 10.30am. Then it’s sitting around in a waiting room, interjected with various tests; blood tests to see if my white blood cell count has recovered enough from the last cycle; height and weight measured to calculate the dose; blood pressure, etc. All to be followed by a chat with the doctor.

Assuming that all goes well and we can go ahead, I’m booked in for treatment at 3.30pm (although it might well might be later).

I’m hoping that once all the morning stuff is out the way, there will be enough time before the treatment for Sally and I to make something nice of the day and go for lunch somewhere.

Then after treatment the journey home will no doubt involve being crammed into a rush hour train full of commuters and their laptops, iPads, etc. Given my back, if there’s no seats available I won’t be able to stand, so will have to wait for the next train.

Saskia is awake now and has joined us. She is having breakfast in bed (this is first breakfast, shortly to be followed by a second breakfast of a weetabix, yoghurt and fruit). My Mum and Sister are here to look after her today.

Right, so as to avoid another nervous power walk to the station I should probably wrap it up here and get out of bed.

Will write more either later or tomorrow.

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by | April 11, 2012 · 10:48 pm

Photography Shoot

As some of you may know, I’ve been getting into photography for almost a year now, prompted by my purchase of a semi-serious camera to take photos of Saskia. The problem with this of course is that, as the family photographer, I’m not in many of the photos.

So a few weeks ago we decided to get some family photos done by a professional photographer. Rather than go for studio shots, we thought we’d go ‘on location’ and head to Whitstable beach for our shoot.

The idea was also to get the shoot done before I started looking ragged on chemotherapy – at the time we thought I was going to be on a more caustic drug with more side effects. As it turned out I went onto the better tolerated drug, so should retain my exquisite good looks.

Anyhow, I thought I’d attach a few of our favourites to the blog, so here they are…

If anyone wants to see the rest of the photos from the shoot, or is interested in prints, let me know and I will forward the relevant details.

Thanks to Emma at White Light Photography.

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