Tag Archives: brain mets

Last days

This post has been on my mind for days, clamouring to be written so that I cannot rest until it’s done. So here we go…(it’s long, I’m sorry)…

I feel very mindful of the fact that Ben’s death must have come as a terrible shock to most people, coming so suddenly and so soon after he’d been cheerfully joking about walking sticks and radiotherapy side effects in his last post, and so I want to explain a bit more about what happened during the three and a half weeks between then and the 3rd of January.

Looking back I feel like there were three stages really – leading up to Christmas at home, Christmas week in Canterbury Hospital, and the weekend/New Year in Pilgrims Hospice – so that’s how I’ll tell it.

The weeks before Christmas

The radiotherapy all went very smoothly, though all the going to and from hospital every day had taken its toll and Ben was desperate for the four days off from travelling before the next planned trip to London. His mobility was getting worse all the time and getting up the stairs was becoming a major mission, as was getting up off our bed, and increasingly I was having to help lift or steady him. It was really frustrating and upsetting for Ben, and for me too, being so helpless – only able to offer solutions that Ben hated the idea of (moving our bedroom downstairs, getting a hospital bed for him etc).

It was so much for him to adjust to, and the goal posts just kept shifting and shifting as his mobility got worse. I suggested he write a post about the emotional struggle he was going through and he started writing the post below…

Will the real Ben please stand up?

Ermm… no he can’t, he’s stuck on the toilet and can’t get up.

True story… not one of my favourite stories about myself, but I thought I’d share nonetheless.

Yep that’s right folks, my fatigue and muscle weakness seem to have passed some kind of critical tipping point, whereby I am to all intents and purposes… now useless.

As I have mentioned in previous posts, we knew we were heading along this path with the radiotherapy, but the rate of decline over the last couple of weeks has really taken us by surprise. This has been the toughest and most demoralising period we have faced so far. So I decided to write a little about what we are struggling against, and how it is affecting us emotionally.

Normally I do the emotional stuff after the fact (because during the hard times I feel less inclined to write the blog). But this time I’m going to write in ‘live emotion’ – for two reasons;

1 – it’s how I’m feeling right now, so why write any differently;

2 – I want people to understand all aspects of fighting cancer – both the good and bad times (note to self – need more good times).

I don’t know how Ben managed to be so relentlessly hilarious about the most awful situations, but he did – and that’s how he kept himself (and the rest of us) going I guess. I wish he’d got round to writing the rest of this – I think it would have been an amazing post. He wrote it sometime during the week leading up to Christmas – the week following the radiotherapy. On the Monday an OT had visited and in an hour got Ben to agree to having a whole host of aids sent to the house (a commode, bars for the bed, a bath lift…) and rails fitted along our terrifyingly steep stairs. Though he agreed, he felt really down about it – having changes made to your house feels permanent doesn’t it, and that’s just what he was afraid of – that he would be significantly disabled for the rest of his life.

Twice that week we had to travel up to London – for a clinic and vaccine appointment on the Wednesday, and chemo on Friday. It was really stressful – on several occasions on the Wednesday Ben’s legs nearly gave way and I had to quickly find a chair for him, or try and hold him up in the middle of the street. On Friday we used a wheel chair we’d borrowed, but still getting into and out of the car was really hard. He was so so determined to get that treatment if there was a chance it could help him hold onto life for a bit longer.

Ben was exhausted by the weekend and had decided he wasn’t going to leave the bedroom until Monday morning when we were planning on travelling to Wiltshire to spend the Christmas week at his Mum’s (we’d hoped to camp out there, be looked after, and let people come to us).

While I spent the weekend preparing for our trip, Ben spent the weekend resting and dozing. By Sunday evening the packing was done and we were ready to leave the next day. Unfortunately that’s not what happened. Ben can tell you the next part…

I’m actually writing this from Canterbury Hospital, where I have spent the last few days… yes, including Christmas Eve, Christmas Day and Boxing Day.

Why is that then?

Well, on Sunday night I experienced one of my worst fears about this disease – I had a seizure. Sally discovered me convulsing on the bed and immediately called an ambulance.

I don’t really have much memory of this, but I do remember an intense form of confusion. I kept forgetting things people said to me, my speech wouldn’t work at all – I couldn’t get my words out, and if I did they were the wrong words or at least in the wrong order.

When I came round I was sat on the bed with an oxygen mask on, with Sally and two paramedics. Unfortunately due to our steep narrow stairs, they weren’t comfortable getting me down to the ambulance, so we waited while they ordered some kind of ‘Special Forces’ paramedics who specialise in awkward rescues.

Once they arrived, and after much discussion I was literally tied up in a wheelchair and carried down the stairs to the waiting ambulance, and then off to Canterbury Hospital, which is where I have been since.

Upon arriving at the hospital I had stabilised a lot, but there was still a lot of confusion in my head, I was really struggling to answer the paramedics questions – which was quite frustrating.

The doctors also decided they needed blood tests from me. Now, these eight cycles of chemo have screwed up my veins, and getting blood out of me or getting a cannula into has become almost impossible. An hour or so later, and a number of staff had tried and failed, so we decided to give it a rest – they even tried my groin several times, which wasn’t much fun.

Christmas week at Canterbury Hospital 

So as Ben says in this untitled draft (which he wrote  on Boxing Day night, I think), we spent the Christmas week, from the early hours of Christmas Eve until Friday 28th, at Canterbury Hospital.

Christmas Eve was intense  – a whirlwind of consultants, junior doctors, palliative care specialists, nurses and physios buzzed in and out of the room all day. Ben’s family (and Saskia) who had all been in Wiltshire expecting us to join them had hastily shoved the presents, the mince pies and a few clothes into their cars and raced over to Kent to be with us. Luckily there was a day room on the ward where a few of us could always relax while others visited Ben so we didn’t have to have the whole clan crowded into Ben’s room at once (another plus – Ben had his own room, complete with en-suite bathroom).

In terms of seizures and their after effects on Ben’s speech, he slowly improved throughout the day. He had had another small one in the morning, and during the morning he was still unable to speak properly. To our huge relief however, he slowly regained his ability during the afternoon, and though slow and a bit muddled sometimes, he could hold a conversation.

The other medical issue was a large quantity of fluid that had collected in Ben’s abdomen, making it hugely swollen and tight like a drum. With the Christmas holiday looming, the doctors wanted Ben to be as sorted as possible before it became only a skeleton staff, so that afternoon they put in a drain and took out several litres (to Ben’s relief it was nothing like as painful as the lung drain he’d had a few weeks before).

Christmas Eve night, and the rest of the nights while Ben was there, I slept in a recliner armchair in his room. As everyone does in hospital (and as any of us would after something as scary as a seizure) Ben felt vulnerable and didn’t want to be alone over night. Now I look back I’m so glad I could be with him all that time – we had a few good midnight chats – the last ones we would have it turned out.

Christmas Day and Boxing Day were blissfully doctor-free (no offence to them – they were great – but no one wants to see the doctor on Christmas Day) and we were able to cobble together our own festivities in the day room, putting our presents under the Christmas tree, noshing on sherry and mince pies, and the very decent hospital roast dinner and trimmings. Ben was too sleepy to join us in the day room on Christmas Day itself, but did enjoy several hours on Boxing Day opening his presents and watching Saskia play with her new toys. Here are a few pics…

Having a Daddy cuddle

Having a Daddy cuddle

Comparing our Saskia original art works

Comparing presents (wish Ben was here to think of witty captions…)


Saskia (bit cross), Daddy, Nana and Aunty Kat

Thursday arrived and so did the doctors and decision-makers – Ben hadn’t had any more seizures and was considered stable enough to leave the hospital. Over the previous few days Ben and I had discussed what to do next and he had come to terms with the fact that his mobility was so compromised that he couldn’t go back to living in our top floor bedroom, and that we would have to move downstairs and have a hospital bed put in. This would all take a while to set up so we decided that in  the meantime he would go to Pilgrims Hospice for a week or so to get some respite, work with the physios on his walking and movement in general and give us the time to organise the house for him to come home. So on Friday we moved to the hospice and settled Ben into a lovely room of his own, with a large patio window looking out onto the gardens.

At that point we had NO IDEA that Ben had so little time left. As crazy as it seems now, we all thought there would be at least a couple of months more, and we were still talking of getting to see the Professor at St George’s a few weeks later. When I say ‘we thought’ I don’t include the medical staff – I dare say they suspected that there was very little time left – but we’d decided not to ask the ‘how long’ question right back at the start and that, plus our code of staying positive, kept us optimistic (albeit maybe blindly by this stage). We knew that we were going to have to ask the question soon, and that the treatment was looking increasingly less viable, but still we thought there were weeks ahead of us at least in which to make those choices.

The weekend and New Year at Pilgrims Hospice

The weekend began well, with a visit from some of Ben’s aunties and his uncle, bringing more gifts and lots of smiles and hugs. Although he was very sleepy and drifted off from time to time he loved seeing them, and playing with all his new toys (yes most of his presents were toys – he always was half ten year old, half grumpy old man, I thought).

Ben and Aunty Maria

Ben and Aunty Maria

The sleepiness of that afternoon soon became the norm. Increasingly Ben was asleep more than he was awake. He would start sentences and then fall back to sleep in the middle of them. We hoped at first that this was just drug side effects, but sadly, as it was later explained to us, this was part of the dying process.

Over the days the nurses and I witnessed a number of what we thought were mini-seizures and that I think was his brain giving into the cancer at last. The blessing was that Ben wasn’t in a great deal of pain. He did find it painful when the nurses had to move him around on the bed, but with strong painkillers this was minimised, and they avoided bothering him as much as they could.

There had been another cluster of ‘skeleton staff’ days with the weekend and New Year, and Wednesday saw the return to work of some of the key people responsible for Ben’s care. That afternoon Ben’s mum and I were asked to meet with some of the doctors to talk about Ben’s condition. Finally we knew we had to ask the ‘how long’ question. The consultant said, ‘Well, given how quickly Ben has deteriorated in this short while….’ I finished her sentence, ‘It could be just a few days’. She nodded, and maybe in her mind she was thinking ‘or just a few hours’, but she didn’t say so.

We quickly made calls to family and friends – ‘Please come soon’. That night Ben’s mum and sister joined Ben and I at the hospice – we ate chocolate and watched David Attenborough  talking about giraffes on the telly. Ben wasn’t conscious most of the time but I’m sure he could feel us all with him by his side.

That night I went to bed in my usual camp bed that the nurses had given me at 11 or so. In the night I woke to Ben coughing. It took a while to pass and during that time I sat up with him, occasionally talking to him a bit – I’m so glad I did. Around 3am he was peaceful so I went back to bed and fell fast asleep. I was woken at 7am by the nurse – Ben had gone.


I’m not going to say much more – this is very long already. I hope this is helpful, to know what Ben’s last days were like. They were difficult and sometimes frightening, but they were not painful (not very much so), and he had lots of lovely moments with his family around him, he celebrated Christmas with his little girl, and at the end he went peacefully.

There’s so much more I could say – about how I feel, and what a thoroughly wonderful husband Ben was. But there’s time for that, and the funeral will give us all the opportunity to share our feelings and stories.

One final word…I would like to thank all the staff in the Brabourne Ward at Canterbury Hospital and also at Pilgrims Hospice. They were so kind and thoughtful towards all of us and I will always be grateful to them for how they carried us through these difficult days. Thank you.


Filed under Battle with Melanoma

Weebles wobble…

…but they don’t fall down.

So I recently discovered that I am turning into a Weeble.

For the benefit of anyone not familiar with the concept of Weebles, they are egg shaped little characters, with no legs, and tiny little arms. A picture is worth a thousand words (apparently), so here are some pictures of Weebles I found on the interweb.

A Weeble

So this little chap above is a Weeble. As you can see, no legs, tiny useless arms, and a flesh coloured shirt. He also appears to have holes where his eyes should be. His catchphrase is ‘Weebles wobble, but they don’t fall down’.

I used to have Weebles when I was a child, and a little see-saw and roundabout for them to play on. As you can see in the picture below, Weebles like playing in the park – my Weebles did not have the slide or swing unfortunately.

Weebles at play

My final Weeble picture shows a herd (I think that’s the correct collective term) of Weebles who appear to be lining up in some kind of battle formation. I’m not sure who they are preparing for battle with, or who or what the natural enemy of the Weeble is – perhaps some enormous bird of prey that pecked out all their eyes?

Weebles at war

Looking at Weebles now, I actually find them rather disturbing. Why are they all wearing flesh coloured clothing? And why do they have holes instead of eyes? They don’t look appealing, they look creepy. Fortunately the toy industry has come a long way since then. Lego, it’s the only toy you need.

Anyway, moving on, why am I talking about Weebles? Well, as we have learnt from our discussion so far, Weebles are all torso with no legs and puny little arms. Well, thanks to the steroids I am taking to stop my head exploding, that’s exactly where I’m headed (only I come with changeable shirts in various colours, and proper eyes – hopefully making me slightly less creepy).

As I have probably previously mentioned, one of the side effects of steroids is increased appetite. That, in combination with my recent limited mobility (and therefore lack of exercise) has led to me… well… getting a bit fat, especially in the typical areas where steroids make you put on weight – face, hump on back of neck, and midriff. Yet whenever I have been weighed at various hospital appointments there has been very little variation in my overall weight – which had been puzzling me.

Then the other day I found out why – I learnt that the steroids cause the muscles in your arms and legs to waste away. So while I am putting on weight in certain areas (particularly the stomach area), I’m compensating (unintentionally) by losing muscle mass from my legs and arms. Hence my overall weight has remained relatively stable.

This explains why things like climbing stairs have become such an ordeal. My upper body, which needs to be carried around by my legs is getting bigger and heavier, while my legs are getting progressively weaker. This is not a good thing.

The steroids are a double edged sword – they are performing a vital function in controlling inflammation in the brain, but most of the problems and issues I have (particularly around body image) are as a direct result of their extensive list of side effects. Prior to going on steroids I still looked like me – if it weren’t for steroids I’d still look like me, instead of  slowly turning into a Weeble.

The doctors tell me to be on the lowest dose possible to keep away symptoms of the brain mets. So I find myself in a constant cycle of trying to gradually reduce the dose, only to then increase it again when I get a headache or vision problems.

In recent weeks I have had a few instances of what the doctor described as a ‘visual seizure’. The most recent was only a couple of hours ago – the other two came after a trip to the cinema, and watching a film in a dark room. Basically my vision starts to flicker a little, and I see multi-coloured little shapes (like a zig-zag for example) crossing my field of view. It would be quite pretty, if it weren’t accompanied by the fear that something is about to haemorrhage in my brain.

That’s what the doctors think happened all those months ago when I lost part of the peripheral vision in my right eye, and I’m not expected to get that back – that area of the brain is apparently ‘permanently dead’. So as you can imagine these episodes of vision problems make me quite nervous. The first time I immediately took the maximum dose of eight steroid tablets, the second time four tablets.

The problem with increasing the steroid dose is that you then have to decrease it gradually (one tablet per week) which then just prolongs all the negative side effects. So today when my vision went I just closed my eyes and waited it out – and after an hour or so it resolved itself. The doctors aren’t sure if these vision issues are disease or treatment related, so wolfing down a load of steroids isn’t necessarily the right reaction. I guess I’ll keep trying to reduce the steroids, and see  if they increase in frequency or intensity – that might give us an idea what’s causing them. It gives me a bit more confidence that today’s incident resolved itself without me taking any medication.

Other than turning into a Weeble then, there’s not too much to report. I seem to be tolerating this second cycle of chemotherapy pretty well, with no major side effects to speak of. I get a little dizzy and light headed sometimes when I stand up, particularly towards the end of the day, but am yet to fall over, which is further evidence for the Weeble connection – I wobble, but I don’t fall down (yet).

Pain in my arm has significantly improved, and even the back pain suddenly seems to be beginning to fall in line – it’s still there, but I found myself crawling round the floor chasing Saskia yesterday, which I would never have been able to do a week ago. At this point I’m reluctant to tempt fate by being too optimistic, but it seems there is some improvement in that area at last. And my energy levels seem to be improving day by day at the moment.

So all in all, apart from resembling a creepy toy from the 1970s, I feel in a pretty good place right now.

Right, that’s it for today. Barring any sudden unexpected developments in my situation (please no!), the next post will be about Saskia.


Filed under Battle with Melanoma

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.


Filed under Battle with Melanoma

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.


Filed under Battle with Melanoma