Tag Archives: chemotherapy

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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Bad novelty slippers…

Hi all, I thought it was about time I gave you a little update on recent events.

The last few weeks have been a bit of a drag though unfortunately, for several reasons.

Firstly, about a fortnight ago I fell down the stairs in quite spectacular fashion, with one leg out in front of me, the other trailing behind me. There was a loud ‘snap’, which at first I thought was my trailing leg, but thankfully turned out to be one of the bannister uprights breaking. Given the height and awkward manner of my fall I was quite lucky not to break something other than the house.

What I did manage was to scrape a big patch of skin from my left foot, just above my big toe – right where the strap on my flip-flops sits. I have been wearing flip-flops all summer because; firstly, I like flip-flops; and secondly, with my back I couldn’t bend down to tie shoelaces. Only with a big open wound on my foot I could no longer wear shoes or flip-flops – I did try dressing it and going out one day, but it just aggravated the wound and set the healing back (as well as letting an infection get in there).

So regardless of cancer, this time due to my own clumsiness (and some lethal novelty slippers) I have mostly been confined to limping round the house, willing my foot to heal so I can actually don some form of footwear and go outside – which has been a bit tedious.

Having said that, it was nice in a way to have some enforced rest, as the cumulative effect of the chemo cycles seems to be taking it’s toll on my energy levels. I’m still suffering with dizzy spells, headaches and ‘near fainting experiences’. We think this is due at least in part to anemia and iron deficiency caused by the chemo, perhaps in combination with something called ‘postural hypotension’ (basically a drop in blood pressure and blood supply to the brain when you move from sitting or lying to standing). The effects are usually short-lived, but it’s becoming more and more regular – and the headaches have started cropping up when I am sitting or lying still.

The chemo also seems to be screwing up my veins – I have always had fairly ‘good’ veins, with nurses never struggling with blood tests or putting in a cannula. However, for cycle four of the chemo it took three nurses five attempts to get a cannula into me – which was no fun from where I was sitting I can tell you. Apparently the chemo can scar the inside of the veins and make them brittle, so perhaps there is some kind of negative effect on my circulation contributing to the feeling faint and headaches.

Last week the enforced rest came to an end unfortunately, with four hospital appointments in four consecutive days (including two days in London), which was fairly exhausting. Fortunately my foot had healed just about enough from my stair-diving antics for me to be able to limp around the various hospitals. I had my fifth cycle of the chemo on Friday – after we had driven back from London Sally dropped me outside the house, intending then to go and park the car. Unfortunately as soon as I got out of the car I had a particularly severe fainting moment and collapsed in the middle of the road, convulsing and breathing heavily.

I imagine it looked like a seizure, but I don’t think it was. I was conscious and aware of what was happening, and it just felt like an extreme version of my previous feeling faint episodes. When the worst of it had passed Sally and a kindly passer-by helped me into the house – once I was sat down again I was fine. But I think it gave Sally a bit of a scare. That’s the second time that I have had an extreme episode directly after chemo, so we will have to bear that in mind for the next cycle.

So yes, in summary the last few weeks haven’t been great in terms of my energy levels, or getting out and about anywhere other than hospitals.

This Wednesday we travel to London (yet again) for my first dose of the cancer vaccine – the final piece in my new(ish) treatment plan. As I have mentioned previously we have been waiting for this vaccine for a few months – it finally became available a couple of weeks ago, but despite this we have had two recent appointments for the first treatment cancelled –  so fingers crossed that it will actually go ahead this week.

Supposedly it works well in partnership with the chemo I am on, so we’re glad it’s finally available and we’re keen to start as soon as possible – another branch on my cancer beating stick!

To finish on a lighter note, I found something which made me laugh a bit, and I thought I’d share with you. In the background workings of the blog you can see what people typed into Google (other search engines are available) to arrive at the blog. So in most cases it was some variant of the blog title, or ‘Ben Edge Cancer Blog’, or something similar.

But my personal favourite by some margin, was ‘herbal solution for Weebles’. I really would love to know what that person was actually looking for – perhaps some kind of herbal ‘final solution’? Whilst I am not keen on Weebles, I certainly wouldn’t wish that upon them.

That’s it for now – I will report back after the vaccine.

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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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Not About Saskia

I know I promised you a post about Saskia, but I’m afraid I haven’t got round to that yet. The next one will definitely be about her (probably).

Part of the reason I haven’t got round to writing about her is that last week was chemotherapy week, so we had two trips to London – Wednesday for pre-chemo assessment clinic, and Friday to receive the actual treatment.

Both trips went well. The doctors in clinic were pleased with my progress over the last couple of months, and are hoping this represents what they call a ‘clinical response’ to the chemotherapy. In a couple of weeks I will have a CT scan to determine whether or not this is the case.

Personally I am not getting my hopes up too much, primarily because I have had them dashed too many times before. I was actually reluctant to write this on the blog, in case I was tempting fate – but I figure you’re all on this rollercoaster with me now.

It would be fantastic if it were the chemotherapy eliciting a positive response, but I am also aware that there are other things going on. I have had radiotherapy on certain areas, and a new improved ‘pain management’ regime (painkillers basically).

So it’s difficult to know what’s doing what – but fingers crossed for the chemo!

I was wondering whether I would actually get the treatment, as I have been suffering from light headedness when I stand up after long periods sitting – most likely due to the chemo killing all my red blood cells. Chemo doesn’t determine good from bad cells. It just kills all fast growing cells – cancer cells (we hope) and good cells alike. But my blood test results on Wednesday must have been ok, as I got another big dose of chemo on Friday.

The actual delivery of the treatment went well – aside from dealing with a nurse who was infinitely more interested in repeatedly informing us about her social life than paying full attention to my treatment.

“After you’re done I’m off down the Slug and Lettuce in Wimbledon for a few gins”

“I see, can you concentrate on what you’re doing please, this treatment is kind of important to me”

“Tell you what, I’ll do a manual flush so you don’t have to wait around”

“Ermm… are you sure you are doing this for my benefit, or so you can get down the Slug and Lettuce?”

The manual flush turned out to be a very easy procedure, which involved not doing any kind of flush whatsoever (a flush is where there put a small amount of saline solution down the line into your arm, to make sure you get any treatment left in the line).

I was going to write her lines in some kind of cockney accent for effect, but I decided not to for two reasons:

1 – I remembered this blog is supposed to be about accuracy and honesty.
2 – She wasn’t in the least bit cockney.

And in that spirit I should admit that I wasn’t brave enough to say my lines in that little conversation recital – I did think them though, which I believe makes me kind of brave, to a certain extent.

Anyhow, aside from that little detail, and a slightly bruised vein in the back of my hand, all was fine. Now to see if the lightheaded episodes get any worse after this dose of chemo – and the preliminary results are in… yes, it’s got worse.

In other news, I have made a little resolution – to stop moaning about my appearance.

While on the train home from London on Wednesday a little girl, maybe ten years old, got on the train with her Mum. The girl had a quite severe facial disfigurement, with most of her facial features hard to distinguish, from what looked like some kind of serious burn injury.

I looked at her, and thought that if she manages to cope with that permanent disfigurement, especially knowing how horrible kids can be to each other over the slightest little differences, then I really should not be moaning about being (hopefully temporarily) a bit fat with a round face.

Its funny how life can sometimes make you put your own problems in perspective.

This doesn’t mean that I’ve suddenly got my confidence back in my physical form, those issues won’t just go away. But it does mean that I recognise that in the grand scheme of things, it could be worse, and I should appreciate that fact.

Right, I think I will leave it there for today. Next time, Saskia!

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Seagull Massacre

It’s early Saturday morning, and as usual I can’t sleep. So I’ve decided to write a blog (in bed, from my phone – ooh, get me…).

I’ve been having sleep issues for a while now – I wake throughout the early hours, and then struggle to fall asleep again. This is largely the fault of seagulls.

Our bedroom can get quite warm in the summer, so it’s nice to open a window at night. However, open a window and from four in the morning one has to listen to screeching seagulls on the roofs of the surrounding houses. To be honest ‘screeching’ is a generous description of the hideous noise they make.

Several times while half asleep I have birdicidal (yes, I made a new word – that’s how language evolves, as Sally would say) dreams of buying an air rifle and ‘silencing’ them once and for all. Only when fully awake to realise that I have a very limited field of fire from our window – plus there are lots of them, and perhaps waging war against the entire local seagull population is a bit beyond my current energy levels.

Having said that, I have had a relatively active week. I’ve had two trips to London for hospital appointments, and on Thursday actually found the energy to do some DIY.

This took the form of screwing two flowerpots to the outside wall, and putting up a bracket for a hanging basket. Ok, so it involved a lot of huffing and puffing, sitting down for a rest at various (actually most) stages, and getting annoyed at badly designed pots that don’t allow enough room to get even the smallest screwdriver in to tighten up the screws. What should have been a simple job, wasn’t – although finding a solution actually just made my amazing feat of DIY even more rewarding (so in the end I was secretly glad that the pots were designed by an absolute moron).

For someone who a few weeks ago could barely shower without fainting from back pain, I was pretty chuffed with my day’s activities – it represents a big improvement (and earns me some guilt free Xbox credits).

So back to the hospital visits then. Wednesday I was in for my pre-chemo clinic appointment (chat with doctor, blood tests to see if blood counts have recovered, etc), and then Friday I received my second infusion of chemo and bisphosphonates. Which all went very well.

I seem to have tolerated this chemo pretty well so far. The doctor told us in clinic that he had given me a very high dose first time round. I think dose is dependent on height and weight, but also kidney function – apparently my kidney test came back with very good results (hoorah, part of me that actually works!), hence the high dose. He did say the pharmacist might tell him to reduce it for the second cycle, but when I overheard the nurses checking the actual bag of chemo yesterday, it was the same high dose.

Which I was glad about – although I don’t really understand the link between dose and response. When he said he might have to cut the dose he said this wouldn’t affect the response. You would assume more equals better, but I guess it’s not that simple. Either way, I personally would like to get as much of the stuff in me as possible, just to be sure.

Especially given the fact I seem to have had no identifiable side effects from the first cycle. That might well change, the effects of chemo tend to be cumulative with subsequent cycles. But so far since starting this treatment I have felt better, as opposed to worse.

It would be wonderful to believe that it’s down to the chemo working, and kicking the crap out of the cancer – but I’ve learnt too many times on this journey not to get my hopes up too much.

There are a number of other factors to consider; the receding side effects of the brain radiotherapy, the beneficial effects of my back and arm radiotherapy, the bisphosphonates, and an improved pain management regime, which could all be contributing to my improvement. But lets hope the chemo is in the mix there as well, doing something positive.

So what else have I been up to? Well, watching the Olympics. I was a big Olympic sceptic beforehand. I still think it’s a massive waste of money at a time when we didn’t need to waste a massive load of money. Having said that, I have got suckered in to watching it.

You might have heard that Boris Johnson has suggested that kids should do two hours of compulsory sport a day in school. At first I thought he had just got carried away with all the ‘Olympic mania’, then I realised he was onto something – only he hadn’t gone far enough. I realised that kids should do ONLY sport in school. I know that sounds silly but bear with me, I have a plan…

That way, all our kids will be REALLY good at sport, and every four years at the Olympics we can win ALL the medals. This will result in a huge surge of national pride and self-congratulation.

A huge surge of national pride and self-congratulation that will hopefully last just long enough to get to the next Olympics, where we will win ALL the medals again. And so on.

What this national pride and self-congratulation will allow is the populace to forget all the other issues in their lives – that the economy is screwed, the government is incompetent and we have Porky Pig as chancellor, innocent people are dying in Syria and around the world, university degrees are now prohibitively expensive and useless, our tabloid press is immoral and corrupt, people are denied life extending cancer drugs because they are too expensive, no one under the age of forty can afford to buy a house anymore, etc, etc.

No one will care about any of that. As long as our nation is the best in the world at making a horse prance round a sandy square in a hoighty-toighty manner to the sound of ‘Live and Let Die’, none of that other crap matters. No one will care because we will have all the gold medals IN THE WORLD, and that makes us the best.

The media have also been lamenting potential cuts to sport funding after the Olympics. As part of my plan I think we should divert more money to sport (if not all of it) to aid in this quest for medals. I mean, take the Cancer Drugs Fund for example – what a waste of money. Lets face it people with cancer are generally crap at sport (I’m not going to be winning any medals any time soon, unless they make crawling up the stairs then nearly fainting an Olympic sport). So for ultimate medal payback, scrap the Cancer Drugs Fund, and lets pour that money into something worthwhile, like horse prancing, or our beach volleyball team. It’s all about priorities, and investing where it counts.

Ermm… ok, might have got a bit carried away there. But then if I can’t use the blog for the odd (semi) tongue-in-cheek rant what’s it for?

Oh yeah, keeping you all updated about cancer… oops.

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Dark Days

So I know you have all been in suspense and checking the blog daily (in some cases hourly) after the exciting cliff hanger at the end of my last post…

Well the answer is yes, I made it to the bathroom and didn’t collapse (you did care, right..?).

I also managed to drag myself to London on the Friday for the first infusion of my new chemotherapy treatment. I was actually given two infusions – a chemotherapy called Carboplatin, and something called a bisphosphonate, which is to help with the bone disease (in my spine and arm). The nurse told us that the bisphosphonates can make things worse before it gets better (where have I heard that before?!). So just as I ended the ‘worse before it gets better’ period from the previous week’s radiotherapy, I began the bisphosphonates ‘worse before it gets better’ period.

However, a week and a half down the line, and I think things are improving – it’s slow progress, but it’s in the right direction at least. The pain in the upper arm (where the cancer is located) is subsiding, just leaving me with a bit of sensitivity and nerve pain lower down the arm and in the hand – which is an annoyance as much as anything. The pain in the upper arm will reappear if I do anything strenuous with the arm, so I have to make sure I keep it rested.

My back has improved slightly, which is a welcome relief. The pain and stiffness is still there – I have trouble bending, standing, sitting (depending on position) and can’t walk a great distance. However, the degree of pain is less than it was, which means I can do each of those things a bit more than I could a couple of weeks ago. So my overall mobility has improved, although I am still hoping for some further improvement over the next week or so.

It’s difficult to know exactly what is behind this upturn, as I am now on so many treatments. There’s the radiotherapy, the bisphosphonates, the painkillers (paracetamol and codeine), and I am also now whacked up on a drug called Amitriptyline. Amitriptyline is an anti-depressant, but is also used in lower doses to reduce nerve related pain (specifically the pain in my hand and the sciatic pains down my leg). The doctor also seems to view its anti-depressant benefits as a good thing.

I have found myself with a bit more energy the last week or so, and have made good use of this and my improved mobility by expanding my horizons beyond the bedroom and Comedy Central channels – I have been to see Saskia on the swings at the park, and to see her swimming at Faversham pool. It’s all little steps, my energy levels are still rubbish – but it feels good to be going in the right direction, and most importantly to be able to share in these moments with Saskia again.

In truth I had felt a little distant from her of late, which has been hard. Due to spending all day every day in the bedroom, I hadn’t been spending the time with her that I had previously. Sally would bring her in to see me, but it wouldn’t be long before she was bored and had to be taken elsewhere to expend her boundless energy. I wasn’t getting involved in playing with her, bathing her (my job before I got ill), or any of her outings to the park, swimming, etc. When Sally did bring her to see me, her interaction with me was different to before – rather than make stupid grinning faces at each other (pretty much the basis of our relationship) she would just stare at me and not respond. But that seems to be changing – as I’ve been getting more involved again over the last few days that interaction has started to come back, and we have had some lovely moments, which is a big relief.

That brings me onto something I wanted to talk about – which is almost a little ‘half-yearly summary’ of how cancer has affected my life since my diagnosis five months ago. Before I start though, I want to say I am aware that this next section might sound like a ‘poor me’ sympathy plea for loads of messages telling me how brave I am and to stay positive – but that’s not what I’m trying to do. So bear with me, hopefully my intentions will become clear…

The last month or so has without doubt been the hardest period of this battle so far, with the combination of fatigue (both physical and mental), pain in the arm and back, and just generally being confined to the house (or worse, bedroom). As a result, it has also been the biggest test of our resolve, and it has been very hard at times to stay positive. I was spending every day in one place, in pain, and beginning to lose the hope that things would improve. One night while lying in bed, I stopped to compare my life now, to the day before I was diagnosed – something I had not really done before. What I realised is that cancer has stripped away pieces of my life, one by one. Because it has happened gradually over a period of months I have just dealt with each blow as it has come along, got over it, and moved on – but by comparing my start and end points, it really hit me how much this disease has affected my life.

I have lost my independence – I can no longer drive, something I used to really enjoy. Now if I want to go anywhere Sally has to drive me, which then means Saskia coming, which might not fit with her routine, etc. No longer can I just take myself off to B&Q on a Saturday afternoon to add to my extensive collection of screws and rawl plugs for that DIY job I had been wanting to do (perhaps with a sneaky stop at the McDonalds drive through for a milkshake); I can’t drive myself into Canterbury to spend money I don’t have on camera bits from Jessops (possibly a good thing); I have to ask Sally to drive me to the place where I want to buy her birthday present, making it blindingly obvious what I am going to buy her.

I feel I have lost part of my identity – when I see myself in the mirror, I don’t associate what I see with my perception of myself. I see a short, fat, round-faced, bald man – I see Seth from American History X (a fat neo-nazi – if you haven’t seen the film, watch it). Ok, so I have never been that tall, and have always been a bit fat, no arguments there. But not having an perfectly spherical face and having hair gave the illusion of a couple of extra inches I think! Due to the back pain my walk has started to resemble a waddle, which is not a dignified look. I find myself conscious of people’s perceptions of me, and constantly aware that my outward appearance does not match with the way I think of myself.

I have lost my energy and physical mobility – this contributes to a more general loss of identity beyond my appearance, in terms of the other ways in which we define ourselves. I can no longer take part in many of the activities I used to enjoy. I walk around the house and see skateboards, surfboards and bikes around the place – all currently redundant. I have been off work for five months now, and whilst that might sound great, at least while working I had a purpose. I have begun to miss that, and recently begun to feel a little ‘aimless’ (or worse, pointless!). Sure I can still watch TV or play X-Box, as I did before – but the difference then was I had done a days work. It doesn’t seem quite right to get out of bed, shower, and get stuck straight into X-Box without doing something productive first. But I don’t necessarily have the energy for anything productive, so I find myself at a bit of a loss.

All of the above has also contributed to a general loss of confidence – both psychologically and physically. Psychologically, when you feel like a hamstrung, stifled version of your old self it’s difficult to have the same confidence that you had previously. And physically the loss of my vision means that I am still not as confident out and about in certain situations. Navigating busy places (supermarkets, stations, etc) is tricky. People come at you from all angles, and usual convention is you see each other, and both take evasive action if required. Except I don’t see people coming at me from the right, but they don’t realise that – which has predictable consequences. I find myself devoting so much of my focus to compensating for the vision loss, that it saps my general confidence out and about – I know that sounds odd, and I can’t really explain why it is.

It has also affected my relationships – as described above I feel I have lost time with Saskia (although I intend to fully make up for that). I am also a bit of a social recluse these days, for a number of reasons – I’ve missed numerous opportunities to see friends due to being unwell.

And finally, a little story… a week or so ago Sally was going on a hen night with a group of other mums with children around Saskia’s age. When it came to babysitting arrangements Sally and I had to discuss whether it was better for Saskia to stay at home with me, or go to spend the night with one of the other dads. The idea was perfectly sensible given the circumstances – in my condition it would have been very difficult for me if Saskia had had a bad night. But it hurt so much, and I felt so inadequate, that I’d reached a point where I wasn’t even capable of babysitting my own child.

So there we go, my little ‘progress report’ – when I took a step back and looked at the last five months, it shocked me just how much I have actually lost to cancer in that time. I have lost elements of my identity and confidence – and the horizons of my world (both physical and metaphorical) have gradually receded, until I find my world consists mainly of the house, and just a small selection of the things I used to enjoy doing.

It made me realise just how hard fighting cancer is, and what is involved. It’s not just about fighting the disease, the pain, and the side effects – it’s about fighting for all aspects of your life. Because bit by bit, it will strip away your world.

I think back to four or five months ago, when I had barely any symptoms, – it was easy to talk about fighting cancer and staying positive. Well, as time has gone on, the ‘fight’ has got harder and harder, and on more and more fronts. I now have a better understanding of exactly what fighting cancer involves – and it’s tough. And I’m sure there will be more tough times to come.

As I said above, I’m not writing this as a plea for sympathy. I’m writing this because I want this blog to be an accurate and faithful representation of my experience, a cross-section of what it is like to ‘fight’ cancer – the good days and the bad. So I decided that after what has been our lowest period since this began, it was important to share the experience.

Thanks for reading.

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Treatment Update, Update

Just another quick update to let you all know what happened yesterday.

So we went to see the consultant at Canterbury Hospital, who had a look at my scans and did a few physical checks to test brain function – stand on tip-toes, with your arms out, twirling your fingers, kind of thing (like you might see police asking suspected drugged drivers to do on ‘Police, Camera, Acton’, should you be into that).

The conclusion seemed to be that yes, my vision is certainly impaired, but beyond that everything else in there seems to be working pretty much as normal – which is good to hear.

They also advised that I reduce my dose of steroids, to just enough to keep the symptoms under control – which will be a bit nerve-wracking at first. On the plus side, it should hopefully reduce the desire to eat everything in sight (increased appetite being a side effect of steroids). Although I must admit to having very much enjoyed eating everything in sight.

The actual radiotherapy itself is pencilled in to begin on the 10th May – which is later than I expected to be honest. However, there are as yet unknown variables in there, such as whether or not I have the third cycle of chemo next week, which will depend on CT scan results. If no chemo, then radiotherapy could be brought forward.

So it’s still a bit up in the air. I will have to get in touch with the Marsden anyway to let them know I can still make my scan appointment next week, so will see what they say about the chemo, and go from there.

A good thing is that Canterbury seem fairly relaxed about overlapping the chemo and radiotherapy. Which I am pleased about – I seem to have been tolerating the chemo pretty well, so am happy to go for both.

That’s about it for yesterday’s news – will write more soon.

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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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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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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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