Author Archives: Ben

by | September 10, 2012 · 5:36 pm

Sally’s Moonlight Walk

Still not a post about Saskia I’m afraid (I am working on it!).

This post is about Sally – who is a bit like Saskia, only bigger, and less prone to de-alphabetisising (made up word, it’s my blog, deal with it) my CDs – there are other differences, but those are the main ones.

So anyway, to get to the point…

On Friday 21st September Sally will be taking part in a ten kilometer ‘Moonlight Walk’, to raise money for Pilgrims Hospices.

Pilgrims Hospices is a charity based in East Kent, providing palliative care and other services to people in the local area, free of charge. They have three hospices in the area; Canterbury, Ashford and Thanet.

Now prior to being diagnosed back in February, my sole interaction with the word ‘hospice’ was from a conversation in the TV comedy ‘Peep Show’, that went like this…

Jeremy – “Mum rang to say my uncle Ray is a bit ill”

Mark – “Is it serious?”

Jeremy – “Dunno, he’s gone into the hospice, so I guess he’s being looked after”

Mark – “Hospice? You know what a hospice is don’t you?”

Jeremy – “Like a hospital, but nicer?”

Mark – “A hospice is where people go who are terminally ill”

Jeremy – “Oh right, Mum said he was… what you said. I’m sure he’ll be fine, he’s not a quitter”

Mark – “Well I have to say, probably not mate”

So based on this (and knowing that Peep Show is the best and most accurate source of information for most things) I associated the word ‘hospice’ purely with a place people go to die when they are terminally ill. So I wasn’t particularly excited when we were put in touch with the Canterbury Pilgrims Hospice.

However, since that moment we have discovered that they offer a whole range of services, not just ‘end of life’ care. They have been a great support to us over the last six months or so, in many different ways. I won’t write in detail here, as Sally has already explained in more depth on her ‘JustGiving’ page, which can be found by clicking on the following link…

www.justgiving.com/Sally-Edge

So yes, now I finally get to the point, this is a post asking for money!

Sally has set herself the ambitious target of raising one thousand pounds – if anyone would like to help Sally towards her target, then all donations (however big or small) are gratefully received. Following the support that we have received from Pilgrims, we both believe it is a worthy, and somewhat undervalued, cause.

Thanks to all.

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by | September 1, 2012 · 1:52 am

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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by | August 24, 2012 · 5:58 pm

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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by | August 11, 2012 · 7:29 am

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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by | August 1, 2012 · 3:19 pm

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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by | July 18, 2012 · 11:18 pm

Tattoos, Frasier, and new treatments…

Greetings all,

Apologies it’s been such a long time since my last post – it’s been a period of ups and downs, which should become clear throughout this post.

Right then, where to start?

Ipilimumab

Well the first thing to update you on is our decision regarding Ipi. So following that disappointing appointment at the Royal Marsden (described in my ‘long time, no write…’ post), we went back to clinic a fortnight later to discuss the issue further. We approached this appointment fully prepared to argue our case to go on Ipi – but the doctor that we saw presented a very convincing case against taking this option.

She confirmed that it was the consensus of the whole team at the Marsden (including the doctor who had been on holiday during my previous appointment) that Ipi was not suitable for me because of my pre-existing ulcerative colitis. She advised that she had not been able to find any examples of anyone with a condition like mine being given Ipi; she also cited examples of two of their patients who were currently in hospital, both suffering from severe colitis induced by Ipi, both on intra-veneous steroids, and one of whom they did not expect to recover from the colitis.

Weighed up against this risk was the seemingly miniscule potential chance that the drug would actually have any benefit. She explained that their typical response rate was in the region of five per cent – hardly an inspiring figure! And even then I was advised that I didn’t fit the profile of a typical ‘responder’, so my chances of gaining any significant benefit from the drug were even less than that.

In light of these factors, and after much thought, we decided to turn down Ipi as a treatment option. We felt that it posed too much of a risk to everything else we were doing in terms of our ‘integrative’ treatment approach – if I were to end up in hospital on intra-veneous steroids I wouldn’t be eating Sally’s healthy meals, wouldn’t be able to exercise, would probably have to stop taking supplements, etc.

And also very importantly, I’d only be able to see family and friends during hospital visiting hours, and my time with Saskia would be limited – there’s only so much time she would tolerate in a hospital ward (or be tolerated in a hospital ward!).

In summary, the risk of colitis and the negative impact this could have on everything else we were doing, both in terms of my ability to fight the disease and my quality of life, seemed to outweigh what looked like a very slim chance of a response. So after a lot of thought we decided to say ‘no’ to Ipi.

This was an incredibly difficult decision to make – throughout life you get used to the idea that if you get ill, you go to the doctor and they give you something to make you better. To actually walk away from a ‘conventional’ treatment option like Ipi (despite all the risks) and say ‘we are going it alone’ with diet, exercise, etc, was incredibly unnerving. Rationally we had been through all the pros and cons, and so had faith in our decision – but that didn’t seem to make it any less daunting.

——————————–

Life After Ipi

So that was it – back home from the hospital to fight this monster ourselves, with our regime of exercise, diet, relaxation, supplements, etc.

Since then life has certainly had its ups and downs.

While our integrative regime initially went well, we soon discovered the magnitude of exactly what we had taken on – fighting cancer had suddenly become a full time job. It wasn’t long before we were struggling with the time demands of shopping for and preparing fresh meals, juicing, walking, trying to fit in relaxation, etc. On top of the everyday demands of trying to manage a baby, a house, and the rest of everyday life, we found ourselves a little over-committed.

My previous treatment regime of sitting on the sofa eating scotch eggs and chicken and mushroom slices had certainly been less work, and definitely more enjoyable – although probably not offering as much towards the fight against the cancer.

While on the subject I have been amazed at the amount of admin that having cancer involves. Endless forms, e-mails between hospitals, appointment letters and planning, phone calls between hospitals, prescriptions, etc, etc. It has been truly incredible.

Fortunately just as we were reaching our wits end, we had a week long break in the Lake District, staying in a lovely cottage just outside Keswick with my Mum, Step-dad and Sister. This gave Sally and I a chance to have a bit of a rest, with all the extra pairs of hands to help look after Saskia. I personally didn’t manage to do much walking or photography, mainly due to tiredness – but we had a nice break, with plenty of good pub meals, a boat trip, and time to relax.

Unfortunately towards the end of the holiday I started to suffer with pain in my left arm (which we put down to nerve damage from the chemotherapy), and the pain in my back increased considerably, leaving me in quite a lot of discomfort. To compound matters I also started to suffer more and more from fatigue. By the time we were back home I was pretty much exhausted, and in significant discomfort if in any position other than lying on the bed.

And that has been the story up until now. The last few weeks have been very difficult – between the fatigue and back pain most days have been spent lying on the bed, in a half asleep stupor, watching endless episodes of Frasier, Futurama and the Simpsons on obscure Sky comedy channels (but not Friends, because Friends is rubbish, despite the fact that it is on ALL THE BLOODY TIME). The consensus of the doctors is that the physical and mental exhaustion is a side effect of the brain radiotherapy. I have to admit I thought I had passed the window for those side effects, but evidently not.

The consensus of those around me (ermm… mainly Sally) is that I have also been suffering from a little depression. I can’t say I was really aware of this myself at the time, but I can understand where she is coming from – it seemed to coincide with the period when I felt most mentally fatigued (obviously all that Frasier wasn’t doing a very good job of keeping my spirits up – perhaps I should have been watching Friends after all!). Looking back I can certainly say that over the last few days I have felt mentally more ‘with it’, and Sally seems happy that I am returning to my normal cheery happy-go-lucky self (actually I’m not sure she would go that far!).

Despite spending most of the last three weeks semi-comatose on the bed, an awful lot has been happening in terms of treatments and hospital appointments during that time. Last week on Friday I had radiotherapy treatments at Canterbury Hospital on my arm and back to try and help with the pain (yes, that’s right – it turns out the pain in the arm wasn’t nerve damage, but spread of the cancer to the bone in my arm). Excitingly this involved me getting my first three tattoos – they do a ‘CT planning scan’ beforehand to see the areas they need to target, and then they tattoo you in order to make sure that when they actually come to do the radiotherapy they are targeting the right place.

They give you a choice of what you want – so I went for an anchor, an England flag, and a big lions head. Obviously I am lying – all they did was tattoo three tiny dots on me. One on my arm, and two just above my trouser line, both of which I am currently too fat to be able to see without the aid of a mirror (not the arm, I can see that one – I’m not that fat, yet).

So far I think the radiotherapy has had some benefit – although like with the brain radiotherapy they tell you it can actually make the problem worse for a week or so. But so far it’s not been too bad, and I would say things have improved slightly. So I’m looking forward to next week when I should feel the full benefits.

I also have big news on further treatments – we have been to see another doctor at St Georges Hospital in Tooting, who specialises in both melanoma (among other cancers) and the immune system (anyone watching may have seen him on Newsnight on Monday and Tuesday nights). Given that I have melanoma, and an auto-immune condition, we thought he was worth a visit. So we have been to see him a couple of times, and he has prepared a new treatment plan for me, consisting of about four different medications.

After making that decision to ‘go it alone’ with the Ipi decision it is slightly strange to be back in the world of ‘conventional’ treatments, but it seems what he is offering poses significantly less risk than Ipi, and with hopefully a better chance of pay-off (although as with all these things, the typical response rates are not great). So I am due in hospital on Friday for another course of chemotherapy (but a different drug to last time).

That is assuming I can get there – today I managed to put my back out even more than previously, trying to pick up a towel from the bed, and so have spent this afternoon and evening lying on the bed, even more immobile than usual. So here’s hoping I am mobile enough on Friday to get in for treatment.

Before I finish I want to say my usual thank you to all who have sent messages of support over the period since my last blog. I know it’s been a long time, and it’s difficult for people not knowing what’s going on when I don’t write on here. And I’m sorry that recently I haven’t been replying to those messages, phone calls, etc – it’s not been because I didn’t want to, or because I don’t appreciate them – it’s just because, frankly I have been absolutely exhausted and not really up to it.

Right, I think I’ll leave it there for now. Now, can I make it to the bathroom without collapsing… tune in next time to find out.

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by | June 7, 2012 · 12:04 am

Radio Silence

Hi all,

Just a very quick post to apologise for not posting for so long – I have been meaning to write on the blog for days, but we have just been very busy, so I haven’t quite got there yet.

However I thought I should at least post something to let you know we are all ok, as we have been getting concerned messages.

I will write a proper post tomorrow or Friday to update you all on the news from the last week or so.

But for now it’s bedtime.

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by | May 26, 2012 · 6:54 am

Vital Statistics

So week one of our new regime is done. Rather than bore you with reams of text this time I thought I’d just list a few key stats from the last week…

  1. Times out walking in the park – 10 (started Monday)
  2. Distance walked – 25 km / 16 miles
  3. Times thought might get beaten up in the park – 1 (sinister things have happened in that park)
  4. Times beaten up in the park – none (hurrah, what a lovely, idyllic park!)
  5. Cuts on feet from deciding to walk in flip-flops – 3
  6. ‘Treat’ meals – 1
  7. ‘Healthy’ meals – the rest
  8. Times wanted fish and chips – lots (depending on wind direction you can smell the nearby chip shop from our road / garden)
  9. Times had fish and chips – none (boo!)
  10. Meditations completed – 5 (missed a couple with Saskia teething)
  11. Juicers purchased – 1 (arrived yesterday, assembled this morning)
  12. Juices consumed – 1 (melon, blueberries and kiwi – very good)
  13. Steroid dose – 6 mg (originally 16 mg, reduced by one more tablet this week)
  14. Headaches – none
  15. Back pain – 3 out of 10
  16. Guns n’ Roses albums listened to – 3 (not nearly enough)
  17. Arguments with Transport for London as to whether being told you have brain cancer is an acceptable reason for forgetting to log in and pay the congestion charge that evening – 1 (apparently it’s not – thanks for that TFL, what a compassionate bunch you truly are)

There we are then – the upshot of all that (apart from TFL’s ‘contribution’ to our cause) is that I am feeling good and positive, both physically and mentally.

Hanging out in the pub

A few weeks ago I couldn’t have imagined walking sixteen miles in five days, let alone feeling much better for it.

And mentally it feels like we are taking control of the situation – doing everything we can from our side, while the doctors do their part.

Right, I promised not to bore you so will leave it there for now. Except for a little picture of Saskia taken yesterday (click on the image to see a larger version). Incidentally she celebrates being nine months old today – happy nine months to Saskia.

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by | May 23, 2012 · 9:31 pm

A melting pot of news…

So I thought I’d post again to update you on everything I didn’t manage to fit into Monday’s post (which is quite a lot!).

Firstly then, an update on how I am feeling – not too bad thanks. The radiotherapy certainly seems to have had a positive impact on the brain situation – I’ve not really had any head aches or pressure since the treatment. I have reduced my steroids to half the original dose, and stopped taking codeine about a week ago (leaving me just taking paracetamol in terms of pain relief for my back). Cutting down on the steroids has had a positive impact in terms of reducing my appetite (back down from six meals a day to a paltry three!), and reduced considerably the profuse sweating (a bonus for everyone who has to come near me). The plan is I gradually keep reducing the dose until, hopefully, I can come off them entirely.

Unfortunately I still have the excess weight gained during my rabid, non-stop eating phase while on the higher dose. I have generally put on weight, but another effect of the steroids is that it tends to collect in certain areas – for example round the cheeks and neck, which means I now have an almost perfectly spherical face. I have also developed a ‘hump’ on the back of the neck. This is all part of ‘Cushing’s syndrome’, which occurs as a result of prolonged excessive exposure to the hormone cortisol (i.e. the steroids). I didn’t realise I had a hump, until reading aloud the symptoms of Cushing’s syndrome from Wikipedia – at which point Sally confirmed that, yes, indeed I did have a little camel hump. Only unlike for a camel it serves no useful purpose for me, not even as a small makeshift pillow for hospital waiting rooms.

In addition to my round face, I have lost my hair due to the radiotherapy. They said it might fall out, or thin, or do nothing (covering all bases there then). It started to fall out Tuesday last week – thinking it might just thin a bit, I tried to just get all the loose hair out in the shower. Putting wax in it after my shower resulted in very hairy palms. Wednesday I did the same, and tried again on Thursday – only that time there wasn’t an end to the loose hair, it didn’t stop coming out. As we were off to the Marsden I had to make the best of what was left – but I did look a bit mangy, complete with bald patches that merged with other bald patches throughout the day. So Friday morning we went at it with clippers and a razor, and took the lot off.

I am quite enjoying my new look – partly due to novelty value (probably not something I would have tried otherwise), and partly because I now have more reason to make use of a fine and varied collection of hats (not so much to hide it, more to protect my newly exposed scalp from the newly exposed sun). I do still find myself slapping shampoo on my head in the shower, before remembering that it’s no longer necessary.

The shaved head in conjunction with the round face does mean I now bear a striking likeness to the full moon. For a small fee I am currently available for any lunar-themed kids parties or events.

The vision situation hasn’t improved, and I managed (with some effort!) to get the doctors to admit that it probably now won’t. They said the steroids might help it – but once I pointed out that I have been on high dose steroids for the best part of a month, with no improvement, they admitted it was unlikely to return. Which isn’t great, but in truth if I get out of this with slightly impaired vision, I’d take that in an instant. I’m starting to learn to compensate for it and so it has been bothering me less of late.

The radiotherapy did take it out of me a bit last week – although not to the degree of ‘withering wreck’ (hopefully I am safe from having to eat those words). I didn’t feel too bad, but there was an underlying level of tiredness. This week my energy levels seem closer to normal, which is reassuring. The doctors also seemed sure that any reduced energy was due to the treatment, rather than anything more sinister.

And finally my back seems to be fairly stable at the moment, perhaps having even improved recently. I still can’t stand still in one place for a prolonged period without getting pains down the legs, but in terms of mobility I have been fairly active over the last few days, and it has given me very little grief.

So that’s enough about my physical state – what have I been up to over the last couple of weeks instead of blogging?

Well Monday last week I finally managed to get round to arranging the photography lesson (or to be more specific, ‘processing photos on Adobe Lightroom’ lesson) that I was forced to cancel on that fateful day when my head nearly exploded. A big thank you to John at White Light Photography (the same guys who did our beach photo shoot) who came round and spent two hours with me showing me how to organise and process my photos.

Armed with my newly acquired knowledge, I have been taking time to sift through my photos from the last year or so, and pick out and work on my favourites. Rather than just leave them on the computer for no-one to see, I’ve decided to set up a page to host them on Smugmug – if you want to have a look, I have added a link into the sidebar to the right of the blog, or click here > seebensphotos.smugmug.com

It has been great to finally take some time to make something of these photos. They’ve been taken over the last year since I bought the camera, but they have just been sitting on the computer doing nothing, with me never having the time to play with them or try and make the most of them. I still consider myself very much a beginner photography wise, but I am enjoying the experience of learning.

We were also able to arrange for my Dad to visit last week – which was very enjoyable. We managed to coordinate it so he could come along and see Saskia swimming – she was on good swimming form too, less focused on drinking the pool water this time, more focused on being good at swimming.

On the subject of Saskia, she has finally cracked the art of crawling – first managing it a couple of weeks ago. She’s not been off everywhere as we perhaps expected – but she is now able to deliberately move around when she wants to. She will purposefully move across her play mat when she decides she wants to get to something over the other side for example (sounds like there is some kind of ‘why did Saskia cross the play mat’ joke in there somewhere – I’ll work on that for my next post). Unfortunately for Pickle this means that placing himself just beyond her reach is no longer sufficient to avoid clumps of his hair being tugged – he now has to learn to use altitude to his advantage if he wants to sleep without keeping one eye open.

And the news I know you have all been waiting for – Saskia’s sunglasses have arrived! Given the rubbish weather, today is the first real opportunity we have had to try them outdoors – and as predicted it might take a bit of getting used to before she stops trying to take them off. But here is a picture from yesterday of her doing ‘a Bono’ and inappropriately sporting sunglasses indoors – I think you will all agree she looks pretty cool (far cooler than Bono anyway).

Cooler than Bono (and actually better at writing songs)

The other big focus of the last week or so has been researching and working on our all round, integrative treatment approach. Obviously the hospitals and doctors take care of the ‘conventional’ treatment (chemotherapy, radiotherapy, pain relief, etc) – but that is just one aspect of our approach to tackling this. We have been working toward an all round plan for some time, but it’s been slow progress given hospital appointments and just trying to stay on top of every day life given all that’s going on (I never realised how much admin having cancer can actually involve!).

But we seem to have finally made a breakthrough – both in terms of research avenues bearing fruit, and actually making the changes to our lifestyle. As mentioned in my last post, the news last week has also given us the kick up the arse we needed to actually take the difficult decisions that we need to.

You might have noticed that I am saying ‘we’ and not just ‘I’. That’s because Sally is being amazing and joining me in making many of these lifestyle changes, recognising that (particularly where diet is concerned) there’s no chance of me eating a bunch of cold salad if she is sat in front of me with lovely sausages and mash.

So what are we doing? I won’t go into all the details, but here’s the general idea…

Exercise

Every day now after breakfast I am doing two brisk laps of the recreation ground behind our house, which according to my phone is 2.5km / 1.6m – usually taking me half an hour. The morning is non-negotiable – but if I get time (depending on whatever else we are doing) I am aiming to do the same in the afternoon. So far I’ve managed both mornings and afternoons the last few days. After a period of inactivity given the brain situation it’s nice to get off the sofa and get some exercise. It really does make me feel better – obviously it’s good for me physically, but also mentally in the sense that I still feel I can get up and walk three odd miles in a day, without being hindered by my back, the disease, treatments, etc. That feeling helps contribute to the whole ‘keeping positive’ thought processes.

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Diet

So we are making some big changes to our diet – but sensible changes (we’re not going down the route of living on nothing but wheatgrass!). Sally has been incredible, throwing herself into online research and books about cancer and nutrition (after my CT scan Thursday she busied herself in the nutrition and food section of Waterstones, while I had a forty-five minute nap in one of their comfy armchairs – I did fully expect to get ejected from the store, given that I looked like a moon-faced hobo with half a head of hair who had just gone in for a sleep, but I was left alone). She has identified foods for us to try and reduce or eliminate, and foods for us to try and increase our intake of. Again, I’m not going to go into massive detail (because it’s probably really quite dull for the rest of you) – but essentially what we’re doing is this;

  • Dramatically increase intake of fruit and particularly veg, to eight portions a day minimum (especially raw stuff – salads, etc).
  • Incorporate juicing into our diet – by this I don’t mean fruit juices from Tesco, I mean buying a juicer and juicing raw fruit and veg as a way of getting concentrated nutrients into our diet.
  • Reduce red meat (now only allowed as a treat when eating out).
  • Reduce animal proteins in general (but not eliminate entirely – like I said, sensible approach!).
  • Dramatically reducing sugary treats and snacks (chocolate, biscuits, ice cream. etc).
  • No alcohol – this one I am doing alone. I haven’t drunk for about two months, and at a time like this I just don’t feel like it. So watching Sally have the odd glass of wine is no problem for me.

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Mind

Basically this involves reducing stress and trying to incorporate relaxation techniques and times into our daily routine. So we’re being careful about over committing ourselves, simplifying things like how we managing our finances, and have started to incorporate meditation daily.

It has to be said, meditation is far harder than I thought it might be – I always thought it was easy to switch my brain off (generally if I sit still for more than ten minutes I fall asleep). But it has been proving far harder to empty my brain of thoughts than I expected. Even so, I think it is still beneficial to just stop for a period each day, and take some time to just do nothing – and as we get better at it the benefits should only increase.

This section also includes positive thinking, visualisation, and some other areas we haven’t yet explored – such as hypnotherapy, psychotherapy, and music therapy. Of those three I’m not sure if hypnotherapy is for me. Psychotherapy possibly – it has been offered, but so far this blog has pretty much been my psychotherapy, so I haven’t gone for it. That’s not to say at some point in the future I won’t. Music therapy I think I could definitely go for, being a big music fan. I used to listen to music in the car, but now I can’t drive that’s not happening anymore. For the first time in a long time I am listening to music as I type this – Guns n’ Roses. Right now I am thinking that Guns n’ Roses should definitely form a much larger part of my treatment program going forward (old Guns n’ Roses, not so much new Guns n’ Roses).

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Herbs / Supplements

So there are a number of substances that have shown possible promise in fighting melanoma – sometimes in human trials, other times with lab grown cancer cells or animal trials – and many of these are available as nutritional supplements. Don’t get me wrong, we don’t expect any of these to be a sudden miracle cure, and one could spend a fortune if one wanted to on everything that had at some point been rumoured to have a benefit. But some well placed and targeted research has thrown up a few things of interest.

An important question is whether or not to take these while undergoing the conventional medical treatments, should they cause any interactions or interfere with the action of the chemotherapy or radiotherapy. So I haven’t been taking anything so far – but now I am in a period of no conventional treatment, this avenue does become an option.

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So there we go – that’s an insight into our integrative approach. It is going to entail some difficult choices – personally the diet aspect is going to be the hardest for me. I have asked numerous doctors about diet, and the answer I generally get is that I should go home, and eat what I want (although with an emphasis towards a balanced diet). Which always leaves me wondering whether I really should eat that Easter egg, or leave it well alone. On the one hand you have the doctors telling you diet won’t make a difference, on the other hand there seems to be plenty of credible evidence that diet can help in your fight.

So who to believe? I’d like to believe the doctors, and just eat pizza every night followed by Easter eggs for dessert – but when the stakes are this high, I think it makes sense to hedge your bets on the eating healthily side. Let’s face it, as long as we are sensible and don’t go on any mad ‘fad’ diets, it’s not going to do me any harm – and if it does help will have been well worth it.

Right, that’s about it for today I think – thanks for reading.

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by | May 21, 2012 · 8:55 pm

Long time, no write…

Hi all,

Apologies I haven’t written for a while. After a fairly active period on the blog with all the brain / radiotherapy news, I decided for my ‘week off’ treatment that I would focus my energies elsewhere for a bit of variation (more on that later). And since Thursday I just had to take a break from thinking about cancer and treatments for a few days.

Obviously most of you will have seen Sally’s post on Thursday – yet again another disappointing trip to the Royal Marsden. Since my ‘relapse’ I am yet to walk out of those doors having heard the ‘good’ news option – it always seems to be the ‘bad’ news. Next time I am considering just staying at home, assuming it’s bad news, and saving ourselves fifty pounds on train fare and a whole lot of waiting around.

In truth, while obviously we were hoping for the best, it was not a complete surprise that the chemotherapy was not deemed to be effective. The doctors at the Marsden typically state the positive response rate to be only ten to fifteen percent of patients, and then usually only for a limited time.

What was unfortunate, and made the news more difficult to take, was a bit of a mix up prior to seeing the doctor. I had a provisional appointment booked for Friday to have the chemotherapy if we were going ahead. While waiting to see the doctor I was approached by a nurse, told I was having treatment Friday, handed two blood forms saying ‘pre-chemo’, and told to go downstairs for a blood test.

“Result!” I thought, “that means the chemo was working, doing something at least”.

For the first time in a while I thought I would be leaving the hospital with some positive news, and found myself in the seemingly odd position of being ecstatic about the prospect of receiving chemotherapy.

Then suddenly it dawned on me that maybe the doctors hadn’t reviewed my scans yet, and the nurse had just acted on the basis of my provisional appointment. I quickly tried to temper my excitement, and decided I wouldn’t believe it until I heard it from the doctor. But it was difficult not to have some level of hope – thinking to myself “I’m sure they would have checked everything properly”.

Going through countless scans for cancer and waiting for results have generally been the most harrowing times of my life – it’s pretty indescribable. After a scan I find myself analysing in great detail the attitude of the staff towards me for signs of pity; in waiting rooms I wonder if I am being left until last because they need a senior doctor to break bad news to me; and so on.

What I’m trying to get across is that when one spends so much time trying to read things into things that don’t actually mean anything, it’s very hard not to get excited when someone explicitly says to you, “you are having treatment tomorrow”.

Anyway, as you can probably guess it was just as well I did at least partially prepare myself for bad news to follow – as it turned out I wasn’t to have the chemo after all, and had therefore had yet another needle stuck in my hand for no reason whatsoever (much of the time I feel like a pincushion nowadays).

So that wasn’t the best start to my chat with the doctor – I was obviously disappointed, and angry that such a mix up had been allowed to happen in the first place. But these things happen unfortunately.

Putting that incident aside, what they told us was this – the disease has progressed despite the chemotherapy. Not dramatically so, but enough to not continue with that particular treatment. Which leaves us with two options:

1 – ‘Symptom management’ – two words no patient wants to hear.

2 – Treatment with Ipilimumab (or ‘Ipi’) – a new-ish drug, and what is known as a ‘second line’ treatment (the chemotherapy being a ‘first line’ treatment).

We have been aware of Ipi as a second line treatment option for a while, and it has generally been accepted that if the chemo didn’t work then Ipi was the automatic next step. What took us by surprise in Thursday’s appointment was that I was strongly advised away from this option, and towards the ‘symptom management’ option.

Ipi works by boosting the immune system, to try to help it to fight the cancer more effectively. Now like most anti-cancer drugs it has side effects, and (like most drugs aimed at fighting melanoma) not particularly high response rates. One of the side effects of Ipi is colitis – which I have already, due most likely to an overactive immune system (hence I am on immuno-suppressive medication to manage the colitis). So in a nutshell, the position of the doctor we saw last week is that Ipi represents too great a risk to my health and ‘quality of life’, given my existing colitis, for what he sees as the questionable chance that it will be effective.

Which was, as you can probably imagine, all pretty uninspiring to hear – and leaves us with an awful lot to think about. I find myself in a catch twenty-two situation – with one medical condition that requires suppressing the immune system, and another for which we want to boost it.

In truth, again perhaps we should not have been entirely surprised at the negativity over the Ipi route – I have been aware that the doctor we saw has had reservations about Ipi as a potential treatment option for me from the very beginning. However, we have had more positive discussions regarding Ipi with the other doctor who jointly leads the melanoma clinic – his take last time we spoke was that colitis was the lesser of two evils, and we would have to take the risk and manage any colitis flare up. Unfortunately my situation has changed since that conversation – at the time we didn’t know that the cancer had spread to the brain. So it could be that his opinion would now fall in line with the doctor we saw last week, and he would warn me away from Ipi too. But either way we would obviously like to hear what he has to say – unfortunately he won’t be available to discuss this with us until next week (having had the nerve to go on holiday at such a critical time in my treatment!).

However, it doesn’t look like this will hold us up significantly if we do decide to go for Ipi. It isn’t yet (as I understand it) freely available on the NHS as a licensed treatment – so the Marsden have to make an application for funding, which can take two to three weeks. They have been kind enough to initiate that process immediately, to minimise any hold up should we decide to go for it. Which means that we have time to take over our decision, and can meet with the other doctor once he is back, all within that two to three week window.

So there you go – that’s where we are right now. It was obviously a disappointing meeting – but yet again we have picked ourselves up, as we are becoming very adept at doing (thanks to plenty of ‘opportunities’ to practice!). I’d be lying if I said there hadn’t been some hard moments over the past few days, but we decided to put starting the Ipi research and decision on hold for a few days (given the lack of any immediate time pressure), and throw ourselves into positive and enjoyable things to keep us in good spirits – and I would say we have bounced back pretty quickly.

What I have said before in this blog still stands – we are not giving up, ever!!! There is always hope, and dwelling on negatives and what might happen before it does happen will only compound matters. Sally and I promised each other at the beginning of this that we would just deal with what is immediately in front of us, and that is what we’re doing.

Also, I don’t want to say too much about it at this point in time, but there is a another avenue we are exploring. It might come to nothing, but it’s nice at this point in time to feel we have other options.

And in a way, this appointment on Thursday was perhaps the kick up the arse that we needed to make some other big lifestyle changes to give myself the best chance of beating this (again, more on that later).

So that’s all I’m going to write for now – I had intended to write plenty more, about what we’ve been keeping ourselves with busy since my last post, the above mentioned lifestyle changes, my general condition (not bad, just so you know), etc. But I have already written nearly fifteen-hundred words, have run out of time for today, and want to get this post out there quickly so you know we are ok, and I’m not spending my time trying to throw myself under buses or down any wells.

As always, thanks to everyone for their messages of support over the past few days – it really does make a massive difference.

I will post again soon.

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