Recently I was going through my old Myspace account, and found a blog I’d kept whilst I was having chemotherapy in 2006. As you never know when someone may find this sort of thing useful, I thought I’d transfer it, in full, to this Blog.
20 Feb 2005: My first blog post, a recap of life thus far…
Okay, well this is the first of my blog posts. It’s actually almost the end of April now, so these posts are actually retrospective. I’ve been meaning to do this for a while, but I’m not really the most organised of people.
I’m going to try not to drone on about myself, although thinking about it that does seem to be the point of the average blog. Ah well.
One of the big things happening to me in my life at the moment is cancer, and that’s what the blog will cover in most depth. Later on, when the cancer is dealt with, I may continue to blog about other things – we’ll see.
I’m not at all embarassed about all this, so if anyone ever has any questions (unlikely, not like anyone is actually going to read this anyway!), please feel free.
Firstly, a recap, with a bit of history. Or should that technically be ‘cap’, as I there is no ‘re’ involved yet.
Around August/September ’04, one of my bollocks got all swollen. Needless to say, this was a less than ideal occurrence – and one I saw a doctor about immediately. Two sets of antibiotics (maybe it’s an infection….), and 2 months, later, I get an ultrasound done. This is a rather strange, and bloody cold, thing to have done on your bollocks, but anyway. 4 days later, I’m in surgery, having an Inguinal Orchiectomy. In noddy talk, that’s basically were they cut one of you bollocks off, by removing it via your groin. Joy. Just before I go in, they ask me whether I want a prosthesis (a fake bollock). I say sure, why not, and then a few hours later……
…I’m bloody sore. Well, actually that’s a lie. Actually I’m quite happy as I’ve got plenty of morphine running through my system, and am chatting (up) a hot (I think – as I said, I was enjoying the morphine) nurse. A few hours after that though….
… now I am bloody sore. Even walking to the loo hurts, and takes a while.
So, a week or so later, the dressings come off. I have the worlds largest bruise (or at least it looks that way), and down below looks a little strange as the, ahem, ‘hair-dressing nurse’ decided just to shave the one side off. Very strange sight. Ho hum.
I’ve now been nil-by-mouth for over 24 hours, and so the docs decide that now, this precise moment in time, is the best for me to have a CT scan. No problem I hear you think (well, actually I don’t, as most people won’t have a clue what it entails). The problem is that they make you drink this pink goop. Euch!!! Imagine pernod/sambuca – i.e. aniseed – but not as strong a flavour. Now imagine a consistency of milkshake. Now imagine having to drink a litre of this vile putrecent stuff. Anyway, enough of this particular segue.
A couple of weeks later I get the results from the biopsy – it’s officially cancer. Seminoma to be precise, and there’s some indication that it may have spread a little. After discussing with the doc, I end up having radiotherapy February. Nothing major, a tad tedious, but that’s that.
So that’s the situation as of the end of February ’05……
15 Sept 2005: … the recap continued….
So it’s now that fate decides to send me a spinball. I’m just about to head off to a jolly in the states, wake up, and feel really rather ill. I’ve a sore throat, temperature, and when I look in a mirror look like a hamster. Grrrrr. So I pop to the docs, who tells me I’ve got mumps. Mumps!! Can you believe it. Do not pass go, do not go to the US, in fact, go straight home.
This started arguably the worst two weeks of illness I think I can ever recall. I won’t bore you with the details, but lets just say that I had a permanent fever, passed out when standing up (something I’d never done before – a very strange feeling), and had _lots_ of pain all over my body.
Anyway, life began to then get back on tracks. Around September I changed jobs, moved to London, and started spending lots of time with work in Seattle. And just then…….
6 Feb 2006: … the final bit of the recap.
After you’ve had cancer, the docs like to keep track of you, and part of this process involves periodic bood tests. The theory is that the earlier you can detect any relapse, the better. These blood tests happen every 3 months initially, and for my particular cancer take the form of 3 tests – HCG, LDH, and AFP. Well, it appears fate had something else in store for me, as my Sept/Oct test came back with an elevated HCG score. Joy.
So I had some more bloods drawn, and the HCG was continuing to go up. HCG is quite a good marker – in general it only goes up in guys when they have germ-cell cancer – or they smoke lots of pot (which I don’t). A CT scan, and an ultrasound, later, and the bad news is they don’t have a clue where the cancer is. As an aside, the ultrasound is more interesting than the last time, as this time I’ve a hot female doctor and hot female nurse playing with my bits – it’s remarkable how difficult it is to concentrate on cold showers and the like sometimes :-)
I then get referred for a PET scan, which finally identifies the tumour – as expected it’s one of my retroperitoneal lymph nodes. What’s more, the tumour now shows up on a CT scan, so it’s growing. In fact, my HCG appears to be doubling roughly monthly. As of the start of Feb, my HCG is around the 1400 mark – not scarily high, but still pretty high. The HCG is also playing some tricks to my body, but I won’t go into that. After a quick discussion with my doctor, we decide chemotherapy is the way to go.
Anyway, that’s my life story (wrt cancer) recapped up to this point. And now onto the chemo…..
7 Feb 2006: My first day off work, sick
So today I travelled up to Cheltenham, from London. I’m going to be based here whilst I have my chemo. I’ve never been off ill for a long time before, and I’m not sure what it’s going to be like. In fact, I haven’t been effectively unemployed since I was 16 or so, so this is going to be strange.
8 Feb 2006: Day 1: Inpatient. My god people are old!!
Today is my first day in hospital. I stupidly assumed that I’d be starting my chemo, but no. Apparently hospitals like to get you in a day early so that when you’re due to start treatment, you actually have a bed to lie in. The joy of the NHS eh.
My first thought with all this is, my god these people are old!! In fact, I’m the youngest person in the ward by in-excess of 50 years. Good thing is that there’s some hot nurses here though :-)
9 Feb 2006: Day 2: Inpatient. Fluids….
Okay, today I actually started my chemo. The regime I’m on is BEP – Bleomycin, Etoposide, and Cisplatin (the P is due to the platinimum in the Cisplatin). Each of the chemicals has an assortment of side effects, so life’s going to be interesting. I’ve a cannula in my hand (semi-permanent soft-needle), and that’s hooked up to a drip machine which periodically goes beep a lot whenever the bag needs changing.
The Cisplatin can really hammer the kidneys, so I’m having lots of fluids pushed through me, both drinking, and by drip. In order to check that cisplatin isn’t sitting in my kidneys, I have to measure how much I pee. Thus begins my new sport, which is going to help keep me occupied over the next few months, of seeing how much I can pee in one go :-)
15 Feb 2006: First day as an outpatient
And boy is it boring. I’m soooooo happy that the hospital let me bring my laptop in, both as an inpatient and an outpatient, just so that I’ve got something to do.
My appointment was for around 11am. About 1130 I had my blood taken, for a complete blood count (CBC), to check to ensure I’m not neutropaenic, not suffering from any illnesses, and my platelet and red cell counts are okay.
About 1/2pm, I get called through to the doc who says that everything looks good, so I go back to the waiting room. And never was a room better named….
…. 3 o’clock, 4, 5, all swing by. The room itself is reasonably large, with about 60 seats, most of which are in use. I’ve previously walked through this room and thought wow, there’s a lot of people here on chemo, but all this time I’ve been wrong. I’d assumed that people pop in, get done, and then leave. No, actually what happens is people just sit, and stay, and talk, and sit. Only about half the population of the room are there for chemo – the rest are friends, and neither group are actually going anywhere at much speed. Finally, people start disappearing, and I get in for my 45 minutes of treatment. Total elapsed time: Approx 6.5 hours. Hmmmm.
22 Feb 2006: Reactions ….
It’s strange the different ways that people react to you when you say you’ve got cancer. And interesting how often these reactions are completely at odds to what you’d expect.
I was an out-patient again today. 6 hours or so hours, joy. No major side-effects from the chemo yet, although I’ve begun to feel a little nauseous at times.
But anyway, back to that first paragraph. I can’t remember the exact date that this particularly occurred to me, but it was around this date, so I’m going to insert it here and accuracy be damned.
The impetus behind this post was when I got into an argument with an ex of mine. The ex and I had always had a very up and down relationship. I really like her, but we’re very not suited in many ways. Nothing new there. Anyway, we’d split up around November/December sometime, primarily my fault as I a) had trust issues, b) my moods were all over the place because of the HCG, the cancer, and some other things – leading me to behave like a prick. Still, we’ve remained friends and I was chatting to her about life etc.
When she was younger, this friend had suffered from Leukemia – had suffered much worse with her cancer than I did/have with mine. I assumed that she’d be one of the people who would most know what I was going through, and would be there for me. I was really rather surprised, and more than a little hurt, how this wasn’t the case – during this entire time we barely spoke and she regularly said she’d visit me and didn’t. Little things I know, but maybe I take things too much to heart sometimes.
At this point of time I was single, and I was discussing with her how having a support network of friends is vital, however that no matter how many friends you’ve got, having a partner (gf in my case) is different. Specifically, I’m fortunate enough to have a reasonable number of very close friends. However, and maybe this is just me being a bloke, there’s a world of difference between a friend and a girlfriend, just in how honest you can, and want, to be.
With friends I always keep a relatively happy face on things. Most of the time this isn’t an act – I’m a pretty happy-go-lucky sort of guy, and I haven’t let things get to me. However, sometimes the mask is just that, a mask. Sometimes you do feel down, sometimes it does all get to you. However, personally I prefer not to let my guard down around friends, as keeping the guard up helps me deal with things. It’s not a case of my not being close enough friends with people – it’s more the opposite.
A girlfriend is very different. I’ve always tried to be (and failed, but c’est la vie) honest with them, and this extends to my fears. At times I have felt really down during this process, and a little scared. Not having a girlfriend to be there for me for emotional support has at times made this process a little harder – believe it or not everybody sometimes wants a shoulder to cry on, even me.
The friend didn’t understand this. It’s interesting – is it me being strange, or her not appreciating my view, or is it a guy/girl thing. Who knows. Don’t get me wrong – this isn’t a dig at the ex – it’s just interesting.
23 Feb 2006: New hair! New drunkeness! New cute bar-maid!
Today I got my hair cut. When I found out that I was going to be losing my hair due to the chemo, I decided “Bugger it, I’ve never had a wacky hair-style, maybe it’s time for me to try one”. so I got a red fauxhawk. Interestingly (to me) I quite liked it, and feedback from that most important of demographics, the 18-30 yr old hot female market, was reasonably positive. In fact, I may get it cut like that again when I get my hair back. But I digress…
…. so today I got a new hair-cut. This time, bluey/green spikes. The hair-dressers was rather fun (even if that statement did sound rather metro-sexual) – I turned up, was given beer, and chatted with a collection of cute hairdressers :-) Unfortunately, there was a delay, and my appointment was rescheduled by a couple of hours, and therein lay the seeds of my downfall.
How, one may ask, would I, a typical bloke, deal with a delay of a couple of hours. Well, I took my laptop (alright, a typical slightly-nerdy bloke) to the pub. Then, following the hair-dressing, I met up with a rather eclectic bunch of friends, who then presumed to force-feed me even more beer.
And then to clubbing, and the next stage of the night. I have worked in bars and restaurants for many years of my life, and so have seen just how much barmaids get chatted up, and by whom. Because of this, I tend not to bother doing so myself – they’re just there for work, not to be letched at. Well, just this once I didn’t pay attention to ethics. And it’s all J’s fault.
J is a friend of mine who, being a largeish bloke, and a rugby player, drinks like a proverbial fish. We got chatting at the club (Subtone), in the upstairs bar (a pleasant place, with a piano in the corner, and a really cute barmaid). So we get talking about my cancer, life, the universe etc, and he buys the first round. I remember this well, as I felt I should reciprocate for each round. So….
round 1: A JD and coke, and 2 smirnoff ice, each,
round 2: A JD and coke, and 2 smirnoff ice, each again!
round 3: A bottle of champagne,
round 4: A bottle of champagne, again!
round … – I can’t remember. It’s around this point that my memory of the night disappears. I remember chatting with the bar staff, drinking away, going home, worshipping the porcelain god and in doing so waking my housemate up. I also found, to my extreme surprise and delight, that I’d managed to swap phone numbers with the cute barmaid, and had arranged a drink with her sometime.
All told, an excellent night :-)
28 Feb 2006: And the hair loss begins….
It’s now been about 21 days since I started my chemo, and my hair is now beginning to fall out more noticeably. It’s not majorly noticeable at the moment, but I’m sure it soon will be.
I’ve a bit of side-burns with my hair-style, and have taken to demonstrating how my hair is falling out by plucking out a few of my hairs. It can quite spook people out, which is always funny :-) However, I’ve noticed that the side-ies still feel stubbly, so I thought I’d check out what was happening in the mirror. I’m still horrified by what I saw….. my beard has always had a bit of ginger hair, and it appears that when I was plucking my side-burns out I’d only been plucking my dark hairs – leaving behind a mass of pure ginger!! Abomination indeed! Needless to say, I then proceeded to shave the whole of my beard area off.
5 March 2006: Another stay in hospital
My hair is now all but gone – check out my photos for what it looked like. Most of it fell out over the course of only 2-3 days – it’s a really strange experience to feel whole locks of hair falling out. In fact, I had to clean the plug-hole several times during each shower just to stop it from getting completely blocked and flooding the place. Not nice.
The hospital food is getting a little icky as well now. All told I’ve not been too dismayed by the food. Each meal is made up of three courses, a starter which is normally soup – tends to be okay although sometimes a little chalky. Then there’s a main course and herein lies the problem. The ‘meat’ part of the meal is often quite nice, however the hospital insists on giving everyone a balanced diet. This involves them adding a portion of potato, and of other veg. This veg is normally overcooked, and all told I’ve been having problems keeping it down.
I’m not sure whether it’s the hospital food or not, but I’m definitely beginning to feel more nauseous. All told though, I’ve been rather fortunate with chemo side-effects.
6 March 2006: New hair! New drunkeness! New girlfriend!
Finally got around to having my hair all cut off, and it’s bloody cold! Still, at least it’s not falling out over the place now – my bedroom looks like a mad barber has set up office!
Anyway, decided to get out, so went with a group of friends to a place I like called ‘Slak’, for comedy night. It was an excellent night, with a bit of an accidentally beneficial outcome.
Turns out there was a bit of a problem with the bar-maid from Subtone the week before. The prime problem being – I didn’t know her name, and she blew me out (good excuse though, so I can’t complain). As I’d said, I was rather drunk that night, and must admit I can’t remember exactly what she looks like. Moreover, I’d obviously had some problems typing her name into my phone, and so was left with a name or ‘la’… So was it laura, louise, katy, who knows…
This doesn’t sound a problem thus far. However, there was a girl at Slak (the comedy night) who looks just like her. I think. And she’s made eye contact with me. So, the quandry is, how do I find out whether it’s her or not, without tipping my hand?
Anyway, to cut a long story short, it turns out this girl isn’t the barmaid from Subtone. She is currently in her final year as a student nurse. “Interesting”, I say (not thinking where the conversation is going to go), “I just got out of hospital myself”. “Really, why?” – D’oh!!
And this brings up an interesting point. When you’ve got cancer, and you’re on the pull, at what point do you let the girl you’re chatting up know? I don’t want to scare them off, but at the same time don’t want any sympathy, whether false or real. Decisions decisions. But back to the story – so, I’ve just put my foot right in my mouth. So I tell her all about the cancer, and it’s cool. I then get chatting to a friend of hers, and get the surprise of my life….
…this friend thinks the whole cancer thing is just a line!!!! I was in complete shock! It had never occurred to me that anybody would be as low and deceitful to use something like that as a line – surprised the hell out of me, and rather sickened me.
Anyway, I’ve now got a girlfriend. Hurrah!! :-)
8 March 2006: Feeling rough
Back in hospital as an outpatient again. As I’ve mentioned, when I’m an inpatient I have to pee a lot. One of the numerous downsides of this is that I can never get much sleep – having to go to the loo every 2 hours is hardly conducive to rest and relaxation. When I get out, my sleep routine is completely shot, so I’m doing something I never normally do – using sleeping tablets. I try not to use them too often, but they’re really rather useful! The trick is not to get used to them.
As well as feeling rough, I’m still up and down mood-wise at times, and there’ve been other issues – when I discussed all this with the doctor she(!) decided to give me a testosterone blood test. Results will take a week…..
15 March 2006: Testosterone results….
Back in hospital again. You’d be correct to assume it feels like I’m hardly ever out of the place! Anyway, get my testosterone results and….. it’s well down. Joy. Appear the cancer, plus the mumps, has meant that my remaining bollock isn’t putting out anywhere near enough testosterone.
So, I’m now going to need to have testosterone replacement for the rest of my life. Options for this are:-
- A gel to rub into my torso every morning.
Pros: Easy to do, easy to control dosage
Cons: Mustn’t shower within a few hours of doing so, must be careful not to rub the gel onto other people off my skin, must actually remember to do it every morning.
- Skin patches (like nicotine patches)
Pros: Reasonably easy to do
Cons: Can fall off, can irritate skin, can’t change dosages
- Intramuscular injection every 2 weeks or so
Pros: Only have to deal with it every couple of weeks
Cons: Painful, dosages are too high at the start, and too low at the end.
- Implants every 6 months or so
Pros: Even less hassle than the injection
Cons: Requires a minor operation every 6 months, can lead to major mood swings over the course of the 6 months, implants can ‘self-extrude’ – painful!
22 March 2006: Neutropaenic
I was supposed to be in hospital as an inpatient for the third time today. Unfortunately, it turns out that I’m neutropaenic (my neutrophils – the white blood cells that provide one of the first lines of defence against infection – are too low), and so I’m sent home until they get better. I’m not very neutropaenic though – ANC of around 1700.
27 Mar 2006: Actually in this time…
Back as an inpatient, hopefully for the last time. I’m feeling rather bad now, certainly in comparison to how I initially felt from the first couple of cycles. The nausea has been quite bad a couple of times – so much so that I’ve had to ask for extra anti-emetics – and I’ve been getting weird chills at night. A number of other issues, although none of them mind-blowing.
1 April 2006: Heart palpitations.
A very good friend of mine came up to visit me from London this weekend. Had a brilliant time, catching up and gossiping. On my way to meet her on Friday though, I got my next major health surprise – heart palpitations. I accidentally missed the bus into town to meet her, but realised that it does a loop so I could catch it a little further along it’s route. I just had to run about 100m, up a semi-steep slope – not a problem ordinarily. My god was I in for a shock, I managed to get to the bus but could barely walk afterwards – my heart felt like it was about to explode out of my chest. All told it took about 15 minutes for my pulse to return to any approximation of normal, and even then I had the shakes for most of the rest of the weekend!
10 April 2006: Fainting away on cleeve hill
It’s times like this that you realise two things. Firstly, just how much chemotherapy takes out of your fitness, and secondly how much you rely on your body to do what it’s told.
Today was a really nice day, and I’d spent most of the weekend couped up in the house, playing on my new XBox 360. So I decided to go for a walk. Overlooking cheltenham is a little hill called Cleeve Hill, with some rather good views, and a nice pub called the Rising Sun. So I popped into town, grabbed a book and some grub, got the bus to the pub, and proceeded to amble up the hill. And then saunter. And then struggle. Next thing I know, I’ve only been walking 10 minutes or so, and my legs are feeling like I’ve done 10 miles! A minute later and they’re positively shaking. Literally a minute later and I manage to make it to one of the chairs strewn around the hill, whereupon I, for want of a better word, collapse and remain for the next 15 minutes. My chest felt like it was doing a dress-rehearsal for Aliens, and my eyesight completely went – I couldn’t make out a thing. Bloody scary if I do say so myself.
Anway, after recuperating, I carried on walking, albeit at a slower rate, and still almost passing out twice more, prior to returning to the pub for a well earnt guinness.
This example of just how bad my fitness is really drove home how I cannot push myself at the moment – I’ve just got to rest and let my body do it’s thing. No snowboarding for a while :-(
12 Apr 2006: Neutropaenic again, but properly this time!
So I popped into hospital for my nice, 0915am outpatient appointment today. As ever, I expected this process to take a while, but little did I know….. Per normal, I have my blood taken, and then wait. And then wait. Around noon, the doctor calls me in and tells me that I’m seriously neutropaenic (ANC of 90), and so they’re going to admit me. Grrrr. I’ll still have the joy of the chemo though. Double grrr. And, to add even more joy to the situation, the doctors are tacking on another cycle of EP (so just the inpatient bit, no Bleomycin as an outpatient), so I’m going to be in hospital for most of the next 2 weeks!
Still, I can’t complain. I’ve now got my own private room, ensuite shower, own TV, stereo. If you’re going to be ill, you may as well be comfortable :-)
20 April 2006: One last time….
The stay in the neutropaenic ward wasn’t too bad all told. A couple of friends sneaked in a couple of cans of Guinness for me on Saturday, which was a pleasant surprise :-)
Another friend brought in a Subway sub, which I unfortunately had to turn down. When you’re neutropaenic, you’re at major risk of infection, and so there are all sorts of restrictions on your behaviour and diet. The neurtropaenic ward is extremely clean, although not stricly a ‘clean-room’, and there are signs everywhere for visitors to make sure they wash their hands before entering. I could only eat freshly cooked, hot food – no sandwiches, salad, or unwashed fruit.
I was due to come in yesterday (19th) for the final bit of chemo, but unfortunately there were no beds available. Fortunately, there was one today.
23 Apr 2006: I’m out!! And I broke my record!!
I’ve finally (hopefully, in theory) finished my chemotherapy. This stay in hospital was pretty bad – I won’t go into details as it was due to a number of the other patients being really ill, but at least it’s now over.
On the plus side, I finally made my target for peeing :-) In one particular go I managed to get rid of the sum total of 1015ml – which is more than 2 US pints. It’s sad, I know, but that actually really made my day :-)
The side-effects are now beginning to get to me more and more. I constantly feel nauseous, and in fact was almost ill for the first time today. All told, the nausea has felt pretty-much like a really bad stomach-hangover which has lasted for the last few months. I’m looking forward to getting rid of this particular hang-over.
So, to the future. I’m having my neutrophils counted in a couple of weeks, and if I’m neutropaenic then I may be admitted again, but fingers crossed this wont be the case. The following week I’ve got a CT scan to see what has happened to the physical lump of my tumur. Fingers crossed things are almost sorted. We shall see.
I’m now signed off work until 15 May, and I can’t wait to get back to work. All told, I’ll have been off for more than 90 days. I’ve never been off ill for even one third of this before, and it’s been really strange. I’ve been bored almost the entire time – I don’t know how or why anyone would choose to live like this.
One of the things I’m worried about is being able to concentrate when I get back to work. I’ve tried to keep my hand in whilst I’ve been off, and have tried to do some work, but have had serious problems with my concentration span. It’s actually a really worrying occurance, as being able to hyperfocus is extremely important to my work. Hopefully this will come back to me – we shall see.
27 Apr 2006: The eye(brows) have it….
… or rather they did. I’m beginning to go all freak-like – my eyebrows are beginning to fall out! I noticed it a few days ago, but now (IMHO) it’s getting obvious. OMFG! Ah well, shit happens eh. If they continue to go I’ll post a pic of me sans eye-hair for the general titillation of the masses :-)
In further news, I’m absolutely knackered. I think I’ve had about 4 hours sleep in the last 3-4 days, due to feeling ill, and (ahem) saying goodbye to people. Off out tonight and tomorrow, travelling and then drinking Sat, then a mates birthday at Porterhouse on Sunday – fingers crossed I should be able to rest Monday. I hope. Otherwise I think I may just find a comfortable park bench. As you can tell, I’m a tad sketchy today. Ho hum. 2 hours til I have to go to the pub.
1 May 2006: People I don’t know, caring….
It’s really random (and sweet) when people you don’t know, care. Twice yesterday, I was chatting to people I knew of, but hadn’t previously met (friends/family of friends), and they said that they’d previously heard about my whole cancer thing and that I hoped I didn’t mind, but they’d prayed for me. Now personally, I’m an atheist/agnostic, but nonetheless it was really nice of them to do that – and so I thank them. It’s strange, moments like that give you the warm fuzzies – make you think that maybe humanity isn’t doomed after all.
13 May 2006: Back online – 11 days in hospital :-(
I’ve just got out of hospital after 11 days. Went in on Wednesday to hack a quick check-up, and it turned out I was both anemic and neutropenic – and so got admitted. Nothing much to say other than that it was typically good fun, and not boring at all, honest.
17 May 2006: And I’m done
Well, it was a fun few months, but I am now clear, and the doc has decided I need no more treatment, hurray!! Now I need to get back to work, and kick off the periodic checkups I’ll need for the next 5 years.