Author Archives: Ben

by | December 11, 2012 · 5:44 pm

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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by | December 1, 2012 · 6:20 am

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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by | November 23, 2012 · 9:12 am

The best laid plans…

Hello all,

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

The plan was;

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

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

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

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

“Yep, definitely short of breath”

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

“Oh”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It really does never end!

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

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by | November 17, 2012 · 9:39 pm

New Page – ‘Guest Articles’

Just to let you all know I have added a new page to the blog, entitled ‘Guest Articles’.

I was recently contacted by a fellow blogger from the U.S., requesting permission to write an article for the blog, sharing his six years experience as a husband and carer to a cancer patient.

His wife was diagnosed with a rare and dangerous form of cancer called mesothelioma, a diagnosis which normally carries with it a life expectancy of less than a year. Six years on, and following treatment, she is alive and well.

So I have created this ‘Guest Articles’ page, to allow others who have been through, or are going through, a similar situation to share the benefit of their wisdom and experience.

If anyone wishes to write anything for this page, please contact me via the comments section of the new page.

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by | November 14, 2012 · 3:26 pm

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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by | November 4, 2012 · 7:27 pm

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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by | October 18, 2012 · 9:15 pm

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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by | October 15, 2012 · 4:28 pm

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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by | September 27, 2012 · 9:18 pm

Saskia Digest – September Edition

Enjoying a good book

So here it is, my much promised post about Saskia. Looking back the last time I wrote a Saskia post was in May – that time seems to have gone so quickly, and she has changed so much [insert other typical parent clichés here as you please].

Last time I wrote she had just cracked the art of crawling. Well she has now progressed to almost walking, via ‘bear walking’ (on hands and feet) and ‘cruising’ (standing upright but supporting herself against people, furniture, etc). Cruising was followed by unaided standing, and in the last week or so this has progressed to her first tentative steps. She is still a bit unstable with the walking, so crawling, bear walking and cruising are still the primary modes of travel – but she is getting more confident each day.

Being able to stand has brought a whole new realm of the house within her reach – bottom shelves, low tables, CD racks, etc. Posting things through the cat flap seems to be a favoured activity – usually potatoes and shoes. As you can see from the photo below, she also takes particular delight in removing my CDs from their nicely alphabetised by artist, and chronologically within artist, filing system (I am a fun person to be around, honest).

So we have had to do some child-proofing of the house – this has ranged from the traditional (stair gates) to the improvised (a wooden board strapped to the front one of my CD racks with car roofrack straps – it might not be pretty, but it certainly is effective!).

Wrecking Daddy’s nicely alphabetised CDs

That’s actually Marilyn Manson she is reaching for in the picture above – showing early signs of inheriting her Daddy’s good taste (must keep her away from Mummy’s horrendous Adele and Amy Winehouse CDs in case she gets indoctrinated into the world of rubbish music).

On the subject of music, she has begun to show off her dancing skills. She has a little ride-on car, which plays various tunes when you press the buttons on the dashboard (kiddy tunes, not Marilyn Manson). She likes to stand next to the car, press one of the buttons to start a tune, and then ‘dance’ next to it. Her dancing mainly involves shaking her hips back and forth, and smiling gleefully at anyone nearby.

It’s very cute to watch, and fascinating that she seems to have this inbuilt desire to dance when she hears music. As far as we can tell she’s not learnt this from anyone else (her Daddy isn’t much of a dancer, and we haven’t taken her clubbing yet), which suggests it’s an innate characteristic present from birth. Interesting, in terms of nature and nurture.

On the swings at the park

Moving on, she has also become a regular at the local play park – we’re very lucky to have the recreation ground right behind our house, so there are plenty of opportunities for park trips. She is a brave little thing, and will go off of her own accord, crawling or cruising round the park, interacting with the various park ‘furniture’, and watching the other children. Whilst still a bit small for most of the activities, she particularly enjoys the swings and the slide.

We recently had an afternoon out at Whitstable Castle, which has a great play park – including a ‘big’ slide which she very much enjoyed throwing herself down. Sally would sit her at the top and she soon got the idea of shuffling herself off to launch her descent – while I knelt at the bottom, repeatedly messing up trying to focus the camera on a fast moving baby (you can see my best effort below).

Wheeeee!!

She has also recently started using her first word – that being ‘uh-oh’. This seems to translate into grown up as ‘oh dear, I appear to have dropped s0mething’, as an item of food or her water bottle goes over the side of the high chair. When at her very cutest she says it with pursed lips, while looking back and forth between you and the dropped item.

However, ‘uh-oh’ seems to be a very versatile phrase, able to be used preemptively as well as after the event – translated into grown up as ‘oh dear, I am about to drop something’. It’s highly amusing to watch her look at you, say ‘uh-oh’, drop something, then look at you as if it were an accident. She’s going to need to work on her timing a bit if she expects us to believe it was unintentional!

Sharing the driving on the way back from the Lake District

She still goes swimming, although we take her to the local pool these days for ‘freestyle’ swimming, rather than the structured class at Whitstable that we used to go to. We found that she wasn’t really enjoying the Whitstable class – it consisted of a number of activities, two of which involved being dunked under the water, which always seemed to upset her. I understand the logic behind getting the babies acclimatised to water, but I’m not sure they need to be dunked under at six months old to achieve that. I have always been confident in the pool or the sea, but wasn’t dunked under the water as a baby (back in my day… grumble, moan, grumble, etc).

Eventually, as she got more aware, she seemed to enjoy the whole class less and less. So we decided to just take her to our local pool instead, and she seems to have a much better time. She is able to do things at her own pace, seems much more confident, and enjoys it a lot more.

Teaching her Aunty the finer points of boating in the Lake District

She has been busy growing teeth over the last few months – now sporting six fine examples of… ermmm… teeth. So as not to spoil her good looks she has so far managed to grow her teeth entirely symmetrically – she has the middle two at the bottom, and the middle four up top.

As of a couple of months ago she has also been attending nursery. She started going one day a week, but we recently changed this to two half days. There were some settling in issues initially, but these seem to have been overcome in the last few weeks – the switch to half days has possibly helped with this. She now seems to really enjoy her nursery days, and is bonding well with the nursery staff and other babies.

Sally has become mildly obsessed with vicariously trying to live her own dreams of becoming an artist through Saskia, buying her pencils, felt-tips, paints, and play-doh. Progress has been somewhat limited, with Saskia yet to fully appreciate the difference between the two ends of a pencil / felt tip. Her best work so far has either been on her own face, tongue and clothing, or on the spare bedroom wall.

Some of the observant amongst you might have noticed that she has short hair in some of her photos. Unfortunately we recently had to cut all her hair off, as she had developed a habit of pulling her own hair out and eating it. It actually started with the cat’s hair, then Daddy’s chest hair, and a fluffy cushion, before moving on to her own hair. Before long she had plucked the top of her head to the point of almost being completely bald.

We really didn’t want to cut off her lovely blonde curls, so tried everything else we could think of; hats (which she took off); swim caps (which she also took off); a stern ‘no’ (which was either too late or ignored); giving her other things to divert her attention (which she ignored or lost interest in).

So eventually we admitted defeat, and decided that the only way to break the habit was to cut her hair off. So far she seems to have stopped reaching for her own head – but will still go for the cat, cushion, or Mummy and Daddy’s chest or arm hair (for clarification, ‘chest hair’ refers to Ben only, not Sally). I guess we will keep her hair short for a while, until we think the habit is broken.

As it is we have got used to her without her hair, and still think she looks gorgeous (but we’re her parents, we would think that!). You can make your minds up from the photo below.

Saskia finds treasure at Whitstable Castle

Finally, saving the most important news until last, I would like to congratulate Saskia on completing her first full orbit of the sun – or in other words, becoming one year old on 26th August! She had a great day on her birthday, with a meal / little party with family at our local pub, followed by a trip to the park to show off her swing and slide skills. She was on top form all day, and really seemed to have a ball, which was great to see. She particularly enjoyed playing with her older cousins, Molly and Robin.

I have included a few photos from her special day below…

… enjoying her birthday lunch at The Phoenix pub…

… time to unwrap some presents…

… blowing out the candle on her birthday cake…

… with cousins Molly and Robin (and an attention seeking fluffy dog)…

… more present unwrapping back at home…

… and finally, playing with her birthday balloon.

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by | September 19, 2012 · 11:08 pm

Some good news at last…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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