Tag Archives: receiving scan results

by | November 23, 2012 · 9:12 am

The best laid plans…

Hello all,

I said I’d update you on our London appointments this week, so here we go.

The plan was;

Monday a.m. – CT scan at St George’s Hospital
Monday p.m. – vaccine at London Clinic
Wednesday – clinic appointment at St. George’s Hospital
Friday – chemotherapy at St. George’s Hospital

Well it only took until Monday morning for those plans to go awry.

We made it as far as St. George’s for the CT scan. Just as I was getting out of the scanner a radiologist came in…

“How’s your breathing, are you short of breath?”

“Yep, definitely short of breath”

“You have a large pleural effusion in the right lung”

“Oh”

A pleural effusion is where excess fluid collects between the inner and outer linings of the lungs, and isn’t uncommon where cancer is present in the lungs. The pressure of the fluid compresses the inner lung itself, reducing lung capacity and making it more difficult to breathe.

The doctor explained that due to the size of the pleural effusion they weren’t entirely comfortable letting me leave, and suggested I be admitted to the hospital immediately to have the excess fluid drained.

Sally and I agreed to this, figuring that we were there anyway, so we might as well sort it there and then. We were sent to A&E, then resus, where we waited for about six hours for a bed to become available in the main hospital. Eventually we were found a bed on the Oncology Ward, and we settled ourselves in.

The drainage procedure took place on Tuesday – a tube (or drain) was put into my back and then guided via ultrasound to the area containing the fluid. Which was quite an uncomfortable process to be honest. They use local anaesthetic, which is fine until they get too deep beyond it’s reach. The point where they have to push through the lining of the lung was really quite painful.

However, while it may have been painful, it certainly was effective. Within a few minutes of the drain being fitted, I’d filled a litre bag with fluid. The bag was emptied and we returned to the Ward.

Over the next twenty-four hours I drained a further three and a half litres (so four and a half litres in total, or roughly eight pints for those still in the imperial world). – This was quite a shock. I had no idea it was possible for me to be carrying such a lot of excess fluid around, while basically functioning on one working lung.

The drain was taken out of my back yesterday morning then (also quite painful, but at least it was quick – they just yank it out), and we were eventually discharged from the hospital.

I haven’t noticed a significant improvement in my breathlessness yet, but they say it can take a few days. Also they think I might have a chest infection, which won’t be helping, so it’s off to the GP for some anti-biotics later.

So there we are, my impromptu little stay in hospital messed up our plans for the week barely before it had started. I think it was a good thing though – firstly by being an inpatient I met many more of the team looking after me. In my experience it’s helpful if they know your face and a bit of your history.

And secondly we were able to get my CT results very quickly, as opposed to waiting and worrying for a few days.

As far as the results went, it was a mixed bag. The disease in the liver and spleen has shrunk, which is obviously good news. But that in the lungs and brain has progressed slightly (that’s the bad news). So the focus is going to be on stabilising these little b@stards in my head. Potential options include further radiotherapy, and possibly a change of chemotherapy. I have had six cycles of Carboplatin now, which is usually the maximum – but it looks like I’m going to go to eight, before switching to a low dose tablet chemo. This tablet chemo is used for some brain cancers, so hopefully it can therefore reach the brain (and kick some melanoma ass).

So yes, the scan was a mixed bag, but it’s positive to be having a response in the liver and spleen at least.

Now back at home, and dead tired. I’m planning on resting until someone physically forces me to move. Which, due to my fatness is unlikely.

It looks like I am going back into hospital next week for another stay, when they will attempt a procedure to try and prevent another pleural effusion occurring. Plus our vaccine appointment is next week.

It really does never end!

Right, thanks for reading, and thanks to all those who provided support and helped us out this week.

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by | September 19, 2012 · 11:08 pm

Some good news at last…

Another post not about Saskia I’m afraid – but I have news I thought you would probably want to hear.

So today we attended the clinic at St George’s Hospital to get the results of my CT scan last week, to asses whether or not I have responded to the new chemotherapy I am now on. As before at the Royal Marsden, if the chemo was proving effective we would carry on with it, if not then we would stop the treatment (no point enduring the side effects if it’s not offering any benefit).

To be honest Sally and I were both expecting bad news – yes, my condition has been improving, but we have been disappointed so many times in the last six or seven months, that we dared not get our hopes up too much.

However, for once it turned out our pessimism was unfounded. After all the previous disappointments I can barely believe it, but for the first time since my recurrence was diagnosed in February, we left a post-scan clinic appointment with (mostly) good news.

I say ‘mostly’ (in the voice of Newt from Aliens – “They mostly come out at night… mostly”) as the scan did show that the disease had progressed ‘slightly’ (said in any old voice). However, there is a pretty big caveat to that slight progression.

When I moved to the team at St George’s Hospital from the Royal Marsden and started this chemo, a baseline CT scan wasn’t carried out for one reason or another (I was pretty unwell, and the priority was just to get me on some treatment). So prior to last week, my last scan was back in mid-May, eighteen weeks ago – this was therefore the only scan available to compare against, to judge whether the disease had progressed or not.

Of that eighteen week period between the two scans, I spent the first nine weeks not receiving any treatment, and generally having a bit of a rough time of it in terms of my physical condition (this was period I mostly spent lying half-asleep on the bed watching endless episodes of Frasier).

Then nine weeks ago I began these new treatments – and since then my condition has gradually improved, and I have been feeling progressively better.

Given the lack of a proper baseline scan at the point of starting the chemo we can only really speculate – but it seems possible that the disease progressed in that first nine week period while I was not receiving any treatment, and that the chemo has elicited a positive response over the last nine weeks, either halting the disease or causing it to regress.

As I say, the above is only speculation, but it seems logical, and fits with how I have felt physically over that time. The doctor also seemed willing to entertain the above theory as perfectly possible.

Either way, despite the slight progression we are going to be continuing with the chemo – for two reasons; firstly, given the uncertainty described above it’s very possible the chemo has been having a positive response; and secondly, I am about to begin another treatment, a cancer vaccine, which the doctor says works very well in conjunction with the chemo I am currently receiving (Carboplatin).

We have been hoping to get this vaccine for a couple of months now, but up to now it has been unavailable. It is not a treatment licensed on the NHS, and is currently going through clinical trials. As we have previously discovered, I would not be eligible to take part in a clinical trial as most do not permit patients with brain metastases. However, I am to receive the vaccine on a ‘named patient’ basis – which basically seems to mean that on recommendation of my consultant I can receive the vaccine outside of a trial environment, and free of charge (which is just as well – if I was paying it would be nine hundred pounds a consultation!!).

Unfortunately stocks of the vaccine were limited, and priority was given to the clinical trials. However, it seems that the vaccine is now available – today I signed the consent forms, and the plan is that I receive my first dose of the vaccine next week.

So that was further good news. All in all, this morning if someone had offered me slight disease progression, continuing with potentially effective chemo, and starting the vaccine treatment as the outcomes from today, I would have bitten their arm off. And it feels good to have had positive news for once – it renews our hope that things can go our way.

It’s still important to be realistic – this is just one ‘battle’ won in what is still an otherwise long and gruelling ‘war’. But it feels good to be on the score sheet at last with a victory.

So that’s about it for now. Chemo on Friday, Vaccine next week (hopefully), and a post about Saskia sometime soon.

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by | May 21, 2012 · 8:55 pm

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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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 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 | 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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