Category Archives: Battle with Melanoma

News and information about my health situation

Up and Atom II – Revenge of the Linear Accelerator

So as some of you might guess from the post title, I have started my second course of brain radiotherapy (the first course being back in May).

It’s much the same deal as last time, five treatments spaced over five consecutive days – number two was today, so I finish Friday.

This was all requested by the team at St. George’s in Tooting, but the treatment is carried out in Canterbury to save us travelling to London each day. We owe a massive thank you to the team at Canterbury for organising the treatment at such short notice.

So far the radiotherapy has had no ill effects. In fact I had probably the best nights sleep last night that I’ve had in months. I don’t know if it’s related, but long may it continue! Tiredness is listed as a side effect I think (I’m not very thorough at checking side effects these days, I just sign consent forms like they’re going out of fashion!).

Other than that I don’t have much exciting news. Legs are getting even weaker, and stairs present a major obstacle. We have been referred to an Occupational Therapist who can hopefully help with that and a few other problems. Also once the radiotherapy kicks in I should be able to reduce my steroids, which should lessen the muscle wastage in the legs.

I’m also going to get a stick. It’s not unknown for me to get stuck in low chairs nowadays, without the strength in my legs to get up. Also with my pathetic legs my walking isn’t that stable. So I figure a stick might be helpful. I’m going to get a cool mountaineering stick though – not an old man wooden stick with a duck’s head on the top.

It will also be useful for prodding things, for example distinguishing between rocks and hedgehogs – an awkward situation I often come across.

Yep, that’s about it for news. Except for flu jab on Saturday and clinic and chemo next week, so all in all it’s a very busy time.

Will hopefully write again at the weekend.

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Early morning ramblings…

It’s 4.a.m., and I can’t sleep. All is completely silent, with the exception of the occasional ‘sleep-whimper’ from Saskia’s room. Poor little thing currently has probable conjunctivitis in both eyes, and a chest infection to boot. She has some antibiotics which will hopefully sort her out.

Being awake in the early hours is fairly common for me these days. So this time I have decided to do something productive with this time and write an update for the blog.

This last week has been another busy one, with three trips to London (vaccine, clinic appointment, chemo). So I’m looking forward to a rest day tomorrow (well, technically today I guess).

All the appointments went pretty much as planned. It looks like I am to have another course of brain radiotherapy, hopefully in the next couple of weeks. And apparently the vaccine should be starting to kick in about now (usually after the third dose).

So there’s plenty going on in terms of treatments – it feels like we are throwing everything at it. Next, the kitchen sink.

I am pleased about that though. In cancer treatment there is this trade off between the benefits of a treatment and the impact of it’s side effects on the patient’s ‘quality of life’.

This is a choice that I strongly believe should lie largely in the hands of the patient. This is why I am disappointed in the Royal Marsden – they effectively made that decision for me, telling me to go home for ‘symptom management’, based on their rigid ‘flow chart’ style of treatment options (which for some reason also excluded some perfectly orthodox treatments from which I am now benefiting).

I wasn’t ready for ‘symptom management’. I’m young(ish), and otherwise relatively healthy(ish), and seem to tolerate the treatments fairly well. And most importantly I have an awesome little girl, fantastic wife, and an amazing family to fight for.

So I am grateful to my new consultant for giving me the opportunity to be able to continue to fight this disease. I won’t lie, it is hard, and who knows, one day I might tire of all the treatments and side effects, but I’m not there yet – there’s still the kitchen sink in reserve.

In myself I am feeling ok at the moment. I have little in the way of pain these days, that seems very well controlled.

The draining of nearly five litres of fluid from my right lung seems to have had massive benefit. I can still get out of puff, but nowhere near to the same extent as beforehand, and recovery time to a normal breathing rate is much improved.

I would say fatigue and weak legs are my biggest problems. Fatigue is hardly a surprise after six cycles of chemo, and the muscle wastage in the legs we know is the steroids. I’m ok walking on the flat, but stairs are a real killer. I sometimes find myself crawling up them now, like Saskia – except she’s faster than me.

Due to these issues I don’t get out much these days. I would imagine for most people my current ‘quality of life’ would appear pretty rubbish (and in some ways it is). But I have found that by readjusting my expectations of what ‘quality of life’ actually means / involves, then it is possible to enjoy my days, and even take opportunities that would otherwise not be there.

For example, listening to music – I used to always be listening to music when I was younger. As adult life, work, etc, encroached then I found less and less time for it. But now I can lie on the bed with the iPod and rediscover my (fairly vast) music collection.

So it’s ups and downs where ‘quality of life’ is concerned. The trick is to focus on the positive (not always easy).

Right I think I will leave it there and see if I can’t get back to sleep. I’ll post this later though, I don’t want to get lots of angry people shouting at me for making their phones go off at stupid o’clock in the morning.

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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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Pulling a sickie…

I was supposed to be going to the sleepy hamlet of London today, for the dreaded ‘chemo response’ CT scan at St George’s, followed by vaccine dose number three at the London Clinic.

But instead of zipping around London (actually I don’t really ‘zip’ in any sense of the word these days – with the exception of my trouser flies, which I always forget, but that’s another story…) I’m still at home, lying on the bed, much like most other days.

Why’s that then? Well I have been feeling a little under the weather of late, mostly (we think) due to extreme tiredness and lack of sleep. My body has decided it only needs to sleep between the hours of ten pm and midnight – which I can’t say I entirely agree with.

Well to cut a long story short, a crappy nights sleep Monday night led to a sore throat yesterday morning, which by evening had developed into the worst cough I have ever experienced. I was having coughing fits every five minutes or so, and certainly wasn’t going to get any sleep again. Sally very sensibly decided to decamp to the spare room, and left me to my hacking.

So after a night of being awake with non-stop coughing I decided this morning that I was going to phone in sick for today’s appointments.

It’s funny how, despite being genuinely quite ill, I still felt guilty about missing these appointments. Like you feel guilty when you phone in sick at work – you wake up, feel terrible, so you phone in sick… and then as soon as you put the phone down you start to feel better, and subsequently guilty.

Being at home has its advantages. Firstly I can catch up on some sleep. In fact I have been ‘sleep writing’ this blog. Every few minutes I wake up and realise the last sentence I wrote was a load of nonsense.

And secondly I can watch Deal Or No Deal. I’m not really sure how I have managed to get hooked on this show, and I am a bit embarrassed to admit it publicly – especially with ‘Creepy Noel’. But for some reason I find it quite watchable. And watching ‘Creepy Noel’ try to make the game sound anything other than entirely random is kind of funny.

So there we go. I don’t have much to report on my condition really – insomnia, cough, no energy, etc, think that’s about it. Usual stuff really.

Right, will keep you posted next week then, as we have three days of appointments in London.

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Chemotherapy 6 – Vaccine 2

Last week was another busy week in terms of hospital appointments and nearly (or actually) falling over in public places.

We were in London Wednesday morning for my pre-chemo clinic, followed by a trip across London to receive my second dose of the vaccine in the afternoon. It seemed to make sense at the time to book the appointments for the same day, but in truth trekking into London, across London, two appointments, and then trekking home again was a bit much for my current energy levels (just getting up the stairs in the house is an achievement these days).

It was a bit of a rubbish day in general to be honest. With my current insomnia issues, mornings aren’t typically my best time (not that they ever were) – it’s difficult to be chirpy after two hours of sleep, followed by six hours of lying in the dark getting increasingly frustrated about not being able to go back to sleep. So I wasn’t exactly cheery at the early start to the day, and Sally wasn’t feeling too great either – a situation exacerbated by my ‘depressing’ choice of music for the journey (Puscifer, for anyone who is interested) – and the day didn’t really seem to improve from there. Just to help my mood I had my ‘near fainting experiences’ left, right and centre – in hospitals, car parks, a pub where we stopped for dinner, etc.

It’s not pleasant getting out of the car and walking into a busy pub, knowing that there is a strong chance I could collapse, especially if there are no seats available for me to fall into – which is exactly what happened at the first pub we tried. As we walked in it became apparent that they were having a Halloween party, and the place was pretty packed out with no free seats. As my head started to go the best I could manage was to cling onto a small shelf opposite the bar and attempt to stay upright. Fortunately a very kindly lady noted my predicament and directed us to a pub nearby that was serving food.

Once at the new pub and with food ordered, Sally and I decided that given our crappy day (and recent crappy times) we would take advantage of my Mum being around to babysit, and treat ourselves to a little holiday. After some thought we decided to stay in exotic Ashford for a night and go and see Skyfall. So we booked ourselves a room at the Premier Inn (which it turned out had a ‘work view’ for me – I could see my place of work from the window, for no extra charge!) and headed down there as soon as we could check in on Thursday afternoon. We spent the afternoon just lying on the bed, Sally reading and sleeping while I watched a few episodes of ‘Game of Thrones’ on my iPod. Which is pretty much exactly what I would have done at home, but it was just nice to have a change of scenery, and for Sally to have a bit of a break from the pressures of housework, looking after Saskia, etc.

So in the evening we went for a meal (nearly fainted again) and then to see the film. Which, I have to say, I think people have been getting a bit over excited about – it just seemed another formulaic ‘James Bond by numbers’ with a paper thin plot. Mind you, I am not exactly the biggest Bond fan anyway, so I am prepared to accept I am in a minority on this. Also I wonder if ‘chemo-brain’ played a part in my disappointment – I have been experiencing some memory issues lately (forgetting what I did the day before, etc). So towards the end of the film, I had literally forgotten what had happened at the beginning. So there may well have been an amazing plot, I just probably forgot what it was. It appears my attention span is becoming similar to that of a goldfish.

Anyway, upon leaving the cinema I had a fairly severe fainting episode. We decided to wait until everyone else had left before leaving to minimise embarrassment should I have an episode – which proved to be a very wise move. From my seat I managed to make it about five metres before having to cling onto a railing. As the episode got worse, and to avoid collapsing in an uncontrolled manner, I had to lower myself to the ground in the middle of the gangway in the cinema and lie on my back. Where I remained for about five minutes, before crawling across the cinema to sit on a step, and gradually moving to standing. While not particularly funny at the time, it is slightly amusing in hindsight. I was fully expecting the cleaners to come in and query why I was lying down in the middle of an empty cinema, but fortunately they didn’t.

So the following day (Friday) it was then back into London again to receive cycle six of my chemo. Fortunately this went relatively smoothly (Sally and I even managed to agree on the Red Hot Chilli Peppers for the journey), and with minimal fainting issues.

So that’s about all I have to report for now. Sorry if it’s not the most interesting update – but life currently consists mainly of hospital appointments, and lying down (sometimes intentionally, sometimes not so intentionally). Maybe next time I’ll tell you all about ‘Game of Thrones’, or why Puscifer aren’t at all depressing, if you wish?

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Vaccinations done – next up, flea treatment and worming…

So yesterday we journeyed into London again to receive my first dose of the cancer vaccine. Train followed by taxi took us to The London Clinic Cancer Centre – a very posh independently owned hospital right in the centre of London.

Upon entering the building Sally and I finally felt like our rightful status had been recognised. This was the kind of place we belonged – light, spacious, airy, big white leather sofas, porters who would hail a cab for you in case you were too lazy or important to lift your own arm (yes, we did take advantage of this service).

As I registered at the front desk I noticed a little sign…

“All patients receiving oncology treatment must submit a deposit of £30,000”.

Unfortunately I didn’t have the full amount right there and then (having already broken into my last £30,000 to pay for the train and taxi). But I didn’t need to leave a deposit – I have been granted charitable funding via The London Clinic, and therefore receive the treatment free of charge. We’re not really sure how or why I have been awarded this funding – our consultant seems to have handled that side of things, all I did was sign a form that I didn’t read properly. So I guess we owe him a big thank you.

Once we had finished registration we took the lifts up to the ward. When I say ‘ward’, it was not like any other hospital ward I have been in – again, light, spacious, airy, and spotlessly clean and tidy. I was shown to an enormous futuristic looking white chair, where we were served mineral water by a waitress.

After a bit of a wait a doctor came along with the vaccination injection. The actual administration of the vaccine was very quick and simple, just a small painless injection into the upper arm. We waited around for a little while in case I had some kind of adverse reaction, before starting the journey home.

We were told the vaccine was generally well tolerated, with the most frequent side effects being irritation around the injection site, and perhaps experiencing flu-like symptoms in the day or two after the injection. Well so far I’ve not noticed any adverse effects, so will hopefully continue to tolerate it well.

It’s nice when treatments are so well tolerated, as it removes all the ‘treatment vs quality of life’ discussions and value judgements. You can just go for it and hope it works, but feel safe in the knowledge that you haven’t lost much if it doesn’t.

So that’s about it for my vaccine experience. I go back in two weeks for my second dose, and at some point after that I’ll have a scan to see how all these treatments are doing.

But rather than finish there I thought I’d write a bit about the vaccine itself, as a cancer ‘vaccine’ is probably an unfamiliar concept to many people (it was to me up until a couple of months ago). I will mostly be plagiarising this next section from the vaccine leaflet we were given… mostly… (yes, it’s Newt from Aliens again).

Vaccination is a form of immunotherapy. Generally the purpose of vaccination is to elicit an immune response where none previously existed. Taking flu for example – put simplistically (because my understanding is simplistic!) a small amount of the flu virus (perhaps weakened or deactivated) is injected into the patient. The patient’s immune system then forms antibodies to be able to fight off that virus. Should the patient encounter the virus in future, their immune system already has the antibodies required to fight off the virus and prevent the patient getting ill.

This is where the idea of a cancer vaccine sounds strange – the idea of injecting someone with cancer cells. Well fortunately the vaccine doesn’t actually contain cancer cells, instead containing a heat-killed bacteria.

In the mid-nineteenth century it was noted by a number of doctors that infection with certain bacterial organisms seemed to have a beneficial effect on the treatment of certain cancers. Doctors such as William Coley used combinations of bacteria strains (known as Coley’s toxins) injected directly into tumours to treat cancers. During studies it was found that the BCG vaccine was found to have positive effects on certain patients with lung cancer and malignant melanoma. However, these approaches were replaced with the advent of chemotherapy and radiotherapy.

Recently there seems to have been a renewal of interest in the immunotherapy approach (there was an article in the Telegraph or Times recently about Coley’s toxins, in which our consultant was quoted). The theory is that many diseases and cancers are characterised by an imbalance or malfunction in the immune system, allowing cancer cells not only to survive, but to grow unchecked. Melanoma in particular is thought to have a large immune component – which would make sense, given that we already know that my immune system is a bit screwy, hence my ulcerative colitis.

The theory is that the vaccine can help to restore this imbalance in the immune system, that it might restore the body’s ability to have an appropriate response in conditions where it has been compromised, such as cancer. In effect we hope that the vaccine will boost the immune system, and direct it towards attacking the cancer.

Initial studies have shown that the vaccine may have therapeutic benefits and has the potential to complement existing and emerging therapies. It is believed that in some cases it may be possible to induce a state of equilibrium with the cancer so that a patient lives with the disease, while effectively controlling it.

So there we go, that’s my ‘vaccine summary’. Obviously it’s early days in terms of the research, but it has apparently shown very promising results in early trials, and is in further trials now. So it’s very exciting to be receiving this treatment, and we are lucky in that I haven’t had to sign up to a trial to get it. Again, I’m not really sure how or why I am in this fortunate position, it’s down to our consultant again – but I’m certainly not complaining!

That’s it for now – I will keep you updated with any further news.

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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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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.

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Filed under Battle with Melanoma