Author Archives: Ben

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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by | April 9, 2012 · 11:40 am

All about Saskia…

Looking cute

So this post is going to be mainly about Saskia, for two reasons:

Firstly I know many people will be wondering how she is getting on – there are family and friends from far and wide who haven’t seen her for a long time, or in some cases are yet to meet her. So this blog seems like the perfect opportunity to share some of her news and a few photos.

And secondly, I don’t really have much news myself. Since my last post any noticeable chemo side effects have gone, leaving only my back to worry about. Even that has improved since the weekend – although I still have to rest it and avoid standing for long periods. Walking is ok, and sitting can be ok, depending upon the position. The problem is mainly standing still – I had to do a little hopping-from-foot-to-foot dance while standing in the queue at the pharmacy the other day. I made sure I pulled lots of grimacing faces, so that people knew I was in some kind of pain, and not just mental. Maybe they just thought I was desperate for the toilet.

So, back to Saskia then – well, she seems to have come on so much in the last month or so, she is developing so quickly. Whether her development has accelerated, or if it just seems like that to me as I have been spending more time with her, I don’t know. Either way, I do know that it has been lovely to have the opportunity to spend this time and bond with her (despite the circumstances).

Rolling in the park

Probably her biggest and funnest news is that just over a month ago she started ‘baby led weaning’. For those unfamiliar with this concept it basically eschews the traditional idea of purees, liquidising food, and spoon feeding your baby. Instead you put normal food in front of them, and let them discover the food and feed themselves. She still has breast or formula milk in addition to the solid food, so if she doesn’t fill up on solids it’s not the end of the world – at this early stage it’s as much about exploring and learning about food as it is about eating.

Obviously the food has to be healthy (no cheeseburgers!), and if necessary cut or crushed to avoid choking (grapes are either squashed or cut into quarters for example). But usually we find she can have all or at least some of what we are having, even if we are eating out.

“What’s that Saskia? You want Daddy’s side salad – oh ok then, Daddy will just have to make do with just the burger and chips. But I hope you appreciate it – Daddy was looking forward to that side salad most of all”.

Saskia - big fan of food (in this case cauliflower cheese and potato)

In just over a month she has racked up an impressive list of foods – at last count we think at least seventeen different types of vegetable; at least fifteen different types of fruit; chicken, roast beef, cod, bread and toast with various toppings, porridge, boiled and scrambled eggs, omelette, yoghurt, cheese, shepherds pie, risotto, pitta bread dipped in balsamic vinegar and olive oil, and probably much more that I have forgotten.

Watching her try all these foods has been a lot of fun (and very messy) – she seems game for anything. Sometimes the first taste of a new food brings the funniest faces (see the ‘Saskia vs Broccoli’ picture below), but she never gives up – she goes straight back for more, and is yet to reject anything we have given her. She seems to have inherited her Mummy’s diverse taste in food, combined with her Daddy’s ability to shovel in vast quantities (not sure the latter is a good thing!).

Saskia vs Broccoli

This baby led weaning has also had several positive side effects, both for Saskia and for us:

Firstly, because we are now sharing our meals with Saskia, we are eating a lot more healthily ourselves. Sally has always been quite a healthy cook anyway, but with Saskia now sharing in our meals it has added an extra incentive. Which all coincides neatly with my need for a healthy, balanced diet, given my current situation (which has led to what Sally has termed ‘Daddy led weaning’ – where she puts a pile of fruit in front of me, and watches as I discover the food and feed myself – no photos to show I’m afraid).

Secondly, it keeps Saskia occupied while we eat our meals. Last Sunday we managed a full three course Sunday lunch in a pub, while she sat in a high chair happily making her way through a pile of vegetables.

And finally, the act of feeding herself, having to pick up the food and move it to her mouth, seems to have enhanced her development of hand eye coordination and fine motor skills (although you might not believe that when you look at the picture below!).

Saskia vs Porridge

Away from the dining table she has also been practising these skills – everything that comes within reach now needs to be grabbed, tasted, shaken violently, and then banged against anything and everything nearby. All as urgently as possible, before moving on to the next thing to come within range, and repeating the process.

Over the last month or two she has become far more responsive and proactive, observing and interacting with her surroundings. Changing her and getting her dressed is now more akin to wrestling, as she wriggles, rolls over, and attempts to launch herself off the changing table. Bath time is no longer a case of washing her as she passively lies there – it’s now a job just to keep her in the bath, as she tries her level best to escape, along with drinking the water, splashing around violently, playing with her bath toys (usually violently), etc.

Bath time is fun time!

She has also found her voice, and very much likes the sound of it – talking to herself, other people, her toys, etc. She has unfortunately inherited her Mum’s trait for occasional, inappropriate, excessive volume.

Mobility-wise, her main mode of travel is rolling sideways, although she is very close to crawling. She can get up on all fours – sometimes on her knees, and other times just her hands and feet (as if she were doing press ups). Once up on her knees she rocks herself forwards and backwards, but is yet to grasp the idea of putting one knee in front of the other. We don’t think it will be long though before she gets it, and we find her across the room eating out of the cat bowl.

So there you go, that’s most of her news for now. All in all, she is a good natured and contented little thing. Sure, she has her moments like any baby – but generally she gives us very few problems, and brings us an awful lot of laughs, so we consider ourselves very lucky (although I prefer to put it down to awesome parenting!).

Right… well if you made it this far through all the ‘doting Daddy’ writings then well done, and thanks for reading! Just one last photo for you…

Saskia and Mummy watching footballers in the park

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by | April 3, 2012 · 10:13 am

That difficult third post…

Hi,

(ok, so I know the phrase is supposed to be ‘that difficult second album’ – but I’ve already written my second post, so it’s too late for that. And under the circumstances, I think I will allow myself the small pleasure of misappropriating the odd phrase for my own purposes)

So it’s been just over a week since my treatment. In terms of side effects, a few more came on over the weekend. Started to feel a little grotty Friday evening, and felt dead tired Saturday (and a little ‘not with it’ – not dissimilar to being hungover).

I was worried for a while I was developing a chest infection / fever – which would have been bad. I have a little yellow ‘this patient is on chemotherapy’ card from the hospital, which lists the circumstances under which I immediately have to go to A&E, including high temperature, flu like symptoms, etc, etc. I didn’t really want to go to A&E, not on my first cycle at least! But fortunately with some early nights and resting, it didn’t materialise into anything significant.

My back has been giving me grief over the last few days – as mentioned in my first post the lesion on my spine is giving me sciatic pains down both legs. Not sure what’s made it worse the past few days – I think I slept awkwardly Friday night due to not feeling well; or maybe it just seems worse as a result of being a bit more sensitive to pain in general the last few days (a chemo side effect I assume).

Sally has been amazing (as ever), doing the vast majority of the Saskia work (entertaining, changing, bathing, feeding of porridge, removing of porridge from nose, ears, eyes, hair, etc) while I rest to help my back recover. Hopefully it will improve soon and we can share the load a little more evenly.

All that makes it sound like the last few days have been terrible – which I should stress isn’t the case. On Friday the three of us had a lovely sunny alfresco lunch at ASK (courtesy of our Tesco Clubcard vouchers – guilt free lunch tastes even better). And I’ve even begun venturing back into social situations – met with some NCT (ante-natal) friends Friday afternoon, and spent some very enjoyable time with friends Saturday and Sunday.

The last few days have also brought more acts of kindness and generosity. We’ve had a hamper full of goodies, offers of financial support, been treated to lunch, and plenty more messages of support and goodwill. I also received a collection of Daniel Kitson (stand up comedian) material to watch – which is good and very timely, as over the last month I have exhausted Stewart Lee’s (another stand up comedian) entire back catalogue. My recent routine has been something like this…

Go to hospital, get told you have cancer… go home, watch a Stewart Lee DVD to take your mind off it…

Go to hospital again, get told your cancer is worse… go home, watch another Stewart Lee DVD to take your mind off it…

And so on…

I wonder what will happen if (or thinking positively, ‘when‘) I go to hospital and get good news? Perhaps I’ll feel the need to come home and watch a documentary about cancer, just to keep myself on an even keel psychologically.

Right, I think I will leave it there for now – thanks to all those who have viewed the blog so far, and sent feedback and messages of support as a result – it’s been very encouraging.

I think I will try to make the next post about Saskia, for a bit of a change / light relief. Going swimming with her this morning – should be fun.

P.S. If any of you want to receive blog updates automatically, there is a button near the top right called ‘follow’. Click here, enter your e-mail address, and it should e-mail you whenever I make a new post, to save you checking back and finding nothing new.

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by | March 29, 2012 · 9:40 pm

People are nice…

Right then – day two of the blog, day four of the chemo cycle.

Still no major side effects – although my teeth feel a little bit loose. Not sure if that’s due to chemo or not going to a dentist since we first moved to Kent 5 years ago. With all the cancer stuff that’s happened over that time, fillings and whether I need my wisdom teeth out has never seemed that much of a priority. On the plus side, by staying away from a dentist for all that time I have maintained my record of not ever having any fillings (see, I told you this blog would also contain good news!).

So, to pick up where I left off yesterday, I wanted to write a little about the extraordinary generosity and support we have received over the last month from family, friends, colleagues, employers, and even complete strangers. We have been genuinely moved, surprised and humbled by the lengths that people have gone to on our behalf. And to know that all these people are out there, doing what they can for you, really provides a great boost to my motivation to beat this.

Our families have been amazing – driving me to hospital when I didn’t feel like the train, or babysitting Saskia while Sally and I go to hospital; helping us keep on top of the housework, filling our cupboards, taking Saskia off our hands to give us a break, paying hospital travel expenses, helping with DIY, offering us holidays, helping to whip the garden into shape for summer after a winter of neglect, and much, much more.

We have received countless cards and messages of support and hope from family and friends, as well as donations, gifts, prayers and masses said for our cause, distance Reiki performed, and yet more. People have been researching my illness on the internet, and sending us any relevant information that they find.

Friends have also been looking after Saskia while we go on hospital trips. We’ve been incredibly kindly given money to go on holiday, given loan of a flat in Faversham for our visitors to stay in, and had Tesco deliveries sent to our door, among other things.

My employers have signed me off work to concentrate on my treatment and family, and are being incredibly supportive and understanding.

Sally’s employers have, at very short notice, allowed her to extend her maternity period to the full year, and have offered to pay the last three months at the statutory maternity rate (usually unpaid). Her colleagues have been dropping round goody boxes of food, magazines, toiletries, etc, and even raising money for us – the company MD has given up smoking and is donating the money he saves; another colleague is catching the bus to work and donating petrol money saved; several others are doing a sponsored swim for us. The husband of another colleague (a professional driving instructor) is giving Sally driving lessons free of charge to get her back on the road. Plus we have a long list of volunteers for help around the house, babysitting, etc.

I even had a complete stranger on the train home from my first chemo session the other day give me a pep talk after overhearing that I had just been for treatment.

This outpouring of support in all its different forms has been incredible – it has been amazing to witness people pulling together to help us out. The warmth and support we have felt has shed an awful lot of light into what would otherwise be an incredibly dark time, and in no small part has helped us to pick ourselves up from the bad news and stay positive. And it has meant that thankfully we have not had to worry too much about the financial impact of our situation – which is a massive relief.

So this post is a massive, massive thank you to everyone for all you have done – the above is by no means an exhaustive list, and not intended as a list of credits. But you all know who you are – and you have our sincerest gratitude.

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by | March 28, 2012 · 10:35 pm

The beginning of a journey…

Welcome.

I never really thought of myself as someone who would keep a blog – to be honest I couldn’t think that my life or opinions were interesting enough to warrant documenting for the world to read. I could have ranted endlessly about the Daily Mail, but that would have got boring after a while (for you I imagine, probably not for me).

But in the last month or so things have suddenly got a lot more interesting, but unfortunately not in a good way – I have been diagnosed again with cancer.

Some of you may know my history – almost 5 years ago I was found to have a malignant melanoma (a form of skin cancer) on my left shoulder. I was 27 years old, otherwise generally healthy, and had never been near a sunbed in my life. The odd bit of sunburn as a teenager while prancing round Cornwall trying to become a surfer, but nothing major.

It was surgically removed, and after a lot of debate (for about six months) between doctors as to whether it had spread, I was given the ‘all clear’ and sent home.

Two years later it was detected in a single lymph node under my left arm. I was promptly back in for surgery, and had all the lymph nodes from my left armpit removed. Some more scans later, and I was again given the ‘all clear’ (albeit qualified with ‘as far as we can tell’).

The three years since then have been characterised by worries about recurrence, trips to various hospitals for scans and biopsies on various innocent lumps and bumps, and wondering whether I was becoming paranoid and beginning to annoy the doctors with questions about lumps on my testicles.

So in January this year, when I started to develop some lower back pain, I worried about cancer. But I told myself I was being paranoid, and put it down to having a new baby – lifting her up, hauling prams in and out of cars, bending over doing her bath and changing nappies, etc. So much so that I nearly didn’t mention it at my six monthly check up at the Royal Marsden (for those who don’t know, generally ace cancer hospital in London – one of the best places in the country).

In the end I did mention it, just in passing I hoped…

“Bad back? No, that won’t be cancer, probably something like a new baby or something”.

“Great, thanks Doc, see you in another six months”.

Unfortunately the conversation didn’t go quite like that. An MRI on my back and a CT of the rest of me later, and in late February I was told it was back, and had brought friends to play this time – on my spine, in my liver, lungs and spleen (what does a spleen actually even do?).

This news obviously came as a massive blow, and the weeks since then have been a real roller-coaster (and I don’t like roller-coasters!). I won’t bore you with all the details, but in short I had just picked myself up from the knock of the initial news, when I got more bad news – I couldn’t go on a clinical trial of a promising new drug as my melanoma didn’t have the right gene mutation.

Ok, pick myself up and get positive again, there’s another trial I can go on. Except that a week later (last week) I was the told I can’t go on that one either due to the location of my cancer – another blow to pick myself up from. The only treatment option available to me (at present) is the standard chemotherapy treatment for melanoma.

So that’s where we are. I started chemotherapy treatment Monday (two days ago). One silver lining of being on the standard treatment is that it is apparently relatively well tolerated. The infusion of the chemo only took about an hour, into a cannula in my arm. And other than a slightly foggy feeling and a few hot flushes on the train home, since then I have felt fine. No nausea, tiredness, sickness (they give you anti-sickness meds). There might be other side effects to come later in the cycle (each infusion and the following weeks leading up to the next infusion is known as a ‘cycle’), but so far so good.

Then in three weeks I am back in for my second infusion of chemo . Three weeks on from then I have another scan. If the chemo is working then I carry on for another four cycles – if not then I come off it and we try something else.

To be honest after all the trips I have had to London in the last month or so for scans and results it’s just nice to know that I don’t have to go back for three weeks.

So there we are – cancer has motivated me to become a ‘blogger’. Why?

Well in all the turmoil and upheaval of the last month it’s been difficult just keeping on top of everyday life – Saskia, the house, etc (fortunately I am currently signed off work). In the course of all that I have been relaying the news to various people – but I knew there were many good friends who I had not come across in day-to-day life who had no idea what was going on. Hence, the ‘blog‘. I figured this would be a great way to disseminate news and keep people up to date, without me having to say / type the same thing again and again – and for people to follow my progress, leave messages of support, etc (or abuse if you feel that way inclined).

Don’t worry, I’ll try not to make it all about cancer. I’ll put in nice stuff as well – news and photos of Saskia, other photos, and just general news of what we have been up to. The cancer is the motivator for starting this blog, but will not be the sole focus. It’s important to focus on the positive as well.

Speaking of positive – despite all the recent bad news and stress of the last month I am remaining fully positive that I will beat this. As far as I can see that’s the only way to fight this battle. Not long after the first set of bad news, I came down with a chest infection. Then a few days after the bad news about not being able to go on the first trial, I had several attacks (spread over four days) days of an excruciating stomach pain, lasting hours at a time – so bad that the first time I ended up going to A&E in an ambulance at 4am in the morning. The doctor in A&E, my GP and my gastro nurse put these stomach pains down to excess stress due to the cancer diagnosis.

While horrible at the time, these experiences were a clear demonstration and reminder of the effect that the mind and mental state can have on physical well being. If I get down and depressed my body will give me even more crap to deal with. So I figure I can turn this to my advantage – by keeping a positive attitude I minimise both mental and physical stress, hopefully minimise chemo side effects, and put myself in the best possible state of mind to beat this.

There is every reason to stay positive – there seems to be nothing to be gained by sinking into negative thoughts.

Right, I think I will end this post here. I have (believe it or not!) more to write. I haven’t yet touched on the amazing support and generosity we have received from family and friends in the last month.

But it’s late, and I’ve written a lot today, so I will continue tomorrow.

Bye for now.

P.S. This blog is also heavily inspired by a similar blog kept by a guy called Ezra in New York, who has been fighting colon cancer (hopefully, it looks successfully). It would be wrong of me not to credit him for his inspiration, so for anyone who wants to take a look, I have copied the link below. It’s a great read, and he is a wonderfully honest and funny writer (as well as good photographer, bike builder, and cook). So I would fully recommend it. You might also pick up some decent recipes! Thanks to Dan Morse for directing me to his blog.

Link > http://www.fastboycycles.com/teachingcancertocry/

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