Tag Archives: symptoms

Last days

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

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

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

The weeks before Christmas

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

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

Will the real Ben please stand up?

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

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

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

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

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

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

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

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

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

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

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

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

Why is that then?

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

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

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

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

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

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

Christmas week at Canterbury Hospital 

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

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

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

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

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

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

Having a Daddy cuddle

Having a Daddy cuddle

Comparing our Saskia original art works

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

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

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

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

The weekend and New Year at Pilgrims Hospice

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

Ben and Aunty Maria

Ben and Aunty Maria

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

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

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

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

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

After…

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

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

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

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Early morning ramblings…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The best laid plans…

Hello all,

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

The plan was;

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

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

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

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

“Yep, definitely short of breath”

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

“Oh”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It really does never end!

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

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Pulling a sickie…

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

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

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

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

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

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

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

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

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

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

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Chemotherapy 6 – Vaccine 2

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

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

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

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

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

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

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

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

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

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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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Not About Saskia

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Weebles wobble…

…but they don’t fall down.

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

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

A Weeble

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

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

Weebles at play

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

Weebles at war

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Seagull Massacre

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Dark Days

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for reading.

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