Monthly Archives: November 2012

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.

Advertisements

5 Comments

Filed under Battle with Melanoma

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.

Leave a comment

Filed under Other News

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.

2 Comments

Filed under Battle with Melanoma

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?

10 Comments

Filed under Battle with Melanoma