“Life Is a Roller Coaster…”

“…Just gotta ride it.” See, Ronan Keating knows what it’s like; one day you’re up, then you’re down.
Up – I completed my chemo course a couple of weeks ago after ten cycles of Cabazitaxel. Cause for celebration we thought. The drinks are on me, except…
Down – they told me that my PSA count had rocketed from 76 to 94. Still a relatively low number to some cancer fighters but, in my case, over twice the level it was when I was first diagnosed, and after all this treatment.
Down – Just had my latest Denosumab injection which I’m hoping will help to ease the increasing pain in my bones. You may remember it was very effective when I started on it early in the year but the injection was stopped for six weeks after I needed some dental work (broken tooth, curse that pork crackling). It’s been nowhere near as effective since restarting the jabs so I’ve had to up the strength and amount of painkillers (keep taking the tablets). However…
Up – while in the hospital they told me my PSA count had dropped from the 94 to 79. Happy days, that’s more like it. Hopefully this is the start of a downward trend and the numbers will now stabilise. So far the Alien Inside seems to have been using some sort of random PSA number generator but maybe, just maybe, the latest chemo has confiscated his toy and left him crying in the corner. I won’t be happy ‘til he’s drowning in his own tears (and with his 3 sets of eyes that’s a distinct possibility).
So, I’d say that’s more Ups than Downs. Gotta go, here comes that roller coaster again.

Mad nurse stabs patient

Been stabbed by a nurse with a very sharp needle. Well, her badge said she was a nurse; she was possibly the tea lady on work experience. I was only in for yet another blood test (6 in 10 days, no wonder I needed a blood transfusion). It needed to be in my local hospital so they could analyse it before my transfusion. Big mistake.

I don’t recall treading on her foot, or insulting her Mum, or accidentally killing her pet hamster: maybe she’d had an argument with her partner. Whatever the reason, she came at me as if possessed, a wild look in her eyes (I exaggerate for effect, but not much). The standard procedure for taking blood from my arm has always been for the nurse to find a likely vein, tell me I’ll feel a little scratch (not prick), insert needle gently into said vein and let the blood flow. Not this one.

In one movement she held my forearm and jabbed the needle directly into it. Only once under the skin did she use it to search for a vein, pushing here and poking there. I explained that this was a rather painful technique and was more than a little relieved when she removed the needle from my arm. Yet before I could shout “Keep her away from me” she repeated the exercise on my other forearm. She told me she couldn’t find a vein the first time (hardly surprising, they were all probably quivering in fear). At least this time the subsequent fishing exercise resulted in a good flow of blood.

I came out of there with holes in both arms, two shot veins and the thought that she’d clearly failed her work experience so should go back to being the tea lady. I also felt extremely sorry for the next person in the queue.

The down side

I’ve been looking over some of my blog posts and about all the fun stuff we’ve managed to fit in. Apart from the everyday aching through my bones and the daily routine of pills and painkillers it’s sometimes easy to forget I actually have advanced cancer. However, reality is never far away and has a habit of slapping you around the face when you’re not looking.

In this case it was precisely a week ago when I took my temperature as normal and it registered 39.1c. As it mustn’t rise above 37.5c I was told to immediately rush to A&E. Up we rushed to the hospital for me to be pumped full of antibiotics, then fluids as my blood pressure had dropped, then more antibiotics. Seems I wouldn’t stabilise, so one of the doctors said they were going to keep me in overnight, “As you need a rest.” A rest was the last thing I got as they had to check my temperature and blood pressure every two hours, with more fluids administered and more antibiotics. The oncologists wanted to keep me in for a second night but I managed to escape by convincing the ward registrar I’d be straight back if anything else went wrong. Had to postpone my chemo though, because of this infection.

Another thing that came to light during this time is that I’m now anaemic. I’m physically tired: it’s been getting progressively worse for weeks. I thought it came with the territory (you’re on chemo – what do you expect?) but up until now I’ve been very lucky with the side effects and so this deep lethargy came as a surprise. Walking has been getting harder, legs heavier, distances seem longer; headaches have become more common, even with the painkillers. Then a phone call from my GP, “We’ve checked your bloods, you’re anaemic,” (my first thought? – ‘add it to the list’). This was followed by a call from my local hospital, “You’re anaemic. Your haemoglobin count has fallen rapidly. We need to book you in for a blood transfusion – now.” So, in the absence of growing a set of fangs and stalking the streets of London looking for likely victims, I’m having a blood transfusion.

Even the Rock Choir sessions come at a price. The singing is great (ok, maybe not mine) and there’s a few dance moves involved. It must be the dancing that causes the pain later on, once I’m back home. Painkillers haven’t helped and I’ve been known to have to stand up all night, as it’s too uncomfortable to sit or lie down. “Can’t Stop The Feeling,”as Justin Timberlake so succinctly puts it.

Count down

“Come on you Spurs”. I took Charlotte and my brother to the game against Cardiff City last Saturday. It was part of a late birthday present for him and an early one for my second-born. We all had a stonking good time in the rain, the ref was blind (always the case), Spurs won (not always the case) and we improved on Pochettino’s tactics over a few drinks afterwards. I’d also been buoyed earlier in the week when I had my latest Denosumab injection, to be told that my PSA count had reduced to 69 (no sniggering) – little victories.

Victoria has been busy packing for her trip to the land of Oz. She leaves soon for Perth (not Scotland) to speak at a conference on a subject I don’t understand but no doubt has something to do with biodesign.

Anne and I also recently met up with some good friends and fellow Spurs supporters in London. It was only going to be a few drinks but we enjoyed a lovely afternoon and evening; excellent food, lots of drink and conversation of the highest quality (for some reason, the quality continued to rise with each drink we consumed).

Cover your ears

“Loose, footloose / Kick off your Sunday shoes / Please Louise / Pull me offa my knees / Jack, get….”

Ah, don’t mind me, just practicing my singing. I’ve joined my local Rock Choir. By all accounts I’m a bass (not the fish). However, my vocal range is apparently restricted.

Not the only thing that’s been restricted; my range of activities has also been severely curtailed since the cancer has been eating away at my pelvis and legs. The ability to go for long walks; to fully explore new places; to ‘bop ‘til I drop’ and embarrass Victoria and Charlotte on the dance-floor; to go skiing, something I loved; to play hockey, are all now just things I used to be able to do, (OK, confession time, I had no intention of playing hockey again anyway).

But, what the hell, I can still get around pretty well on my pins and the world is full of endless possibilities – one of which, it turns out, is Rock Choir. Just a couple of hours a week, it gets me out of the house in the evening for something that isn’t just another walk and Anne can watch ‘Bake-Off’ in peace.

I told you it’d be good – in more ways than one.

The spaceship had been damaged by a meteor shower on its journey across the universe. The Alien pilot was fighting with the controls and realised he’d have to make an emergency landing on the forbidden planet, inhabited by war-like and unpredictable humans. Where to land? The thruster jets were damaged so it was going to be hit and miss. ‘Mainly hit’ he thought, as he steeled himself for impact, ‘I hope I’ve got a repair kit in the boot’.
The next thing he knew was the incessant screaming of multiple system alarms filling every one of his six ears, punctuated by a strange voice coming from outside the stricken ship. “Give yourself up,” it hollered. He peered out of the broken control-room window to see dozens of soldiers, guns trained directly at him. “Surrender, or we fire,” shouted the voice insistently.
The Alien opened the battered door and walked down the outstretched platform towards the soldiers, gamma-ray gun pointing downwards but ready to use. The soldiers took no chances, advancing with bayonets fixed. The Alien’s internal scanners focused on the pointed steel daggers, analysing the sharp tips and warning that ‘this might hurt a bit’. He didn’t come in peace. He raised his ray gun, pointing it directly at the nearest soldier, and was about to fire when….
…..And then I woke up.
What could it mean? This was not my usual night-time somnambulistic meanderings (eh? eh? Not bad for a beginner). Then it dawned on me; someone coming at the Alien with a sharp weapon in their hand. It must be because this was another week of injections for me: blood test one day, my 9th chemo the next, rounded off with another jab in the bum for my hormone injection. It could have been a pain in so many ways but these things are necessary and are all keeping me going, so no complaints here, especially as the blood test results showed that my PSA level has come down – now 71. Only 3 down from my last chemo but down is down. My bones don’t ache as much as they were over the summer, so I think the Denosumab injection is working. Now if they could just find the results of my MRI scan from a couple of months ago, it’d be peachy.
So the dream wasn’t just science fiction, it was about kicking an alien’s butt – The Alien Inside.

Hair – do we really need it?

Hey, how’ve you been? I’ve missed you; as well as missing most of my bodily hair, which seems to have disappeared from down-under (careful!).

Throughout both bouts of chemo I’ve been very lucky to have kept most of the hair on my head. I still have a bald patch on the top but if I look in the mirror at a certain angle it totally disappears (the Donald Trump wig can wait). What I didn’t realise was that while I was looking upwards to check, I should have been looking down. When I did, I found that my bits are bald: what was bountiful is now bare; what was bushy is now barren (ok, that’s enough about short’n’curlies). Not sure what they were for in the first place but I kinda miss them now they’re gone.

Talking of missing things when they’re gone, after the latest consultation with my oncologist I was more or less reconciled to my PSA level staying around the 60 mark, give or take. Then, after my 8th chemo, that short-lived stability was gone, shattered, blown out of the water. If you’re going to break a record then do it properly – PSA has risen to 74, from 58. That’s doing it properly, no messing about. Will it keep going up? Should make my next chemo interesting.

We don’t hang around here, though; especially with the good weather. In between chemo sessions, Anne and I have been back to Cardiff to see our friends’ daughter get hitched; to the sound of sheep in the background and a male voice choir to the fore (brought tears to the eyes – or was that the tight trousers?). I saw Spurs beat Fulham (my fingernails still growing back). We went to stay with Anne’s sister and brother-in-law just outside Richmond-on-Thames: Ham House = tick; Richmond Park = tick; Kew Gardens = tick; riverboat race = tick; banter = tick; beers = tick; beers = tick (no, not a mistake).

Back on the Denosumab now as well. Hopefully be able to come off some of the painkillers when it kicks in.

It’s all happening. Make sure you don’t miss the next exciting instalment (‘cos I’ve no idea what’ll be in it).

More wet stuff

I got wet again the other evening; this time soaked from the ground up, which struck me as odd. Anne, Victoria and I were in a bar ((no kidding!) in Portsmouth. We’d taken a few days off as I had no medical appointments last week, so headed down to the deep south.

We’d been touristing (?) all day and deserved a reward. A couple of pints of ‘craft beer’ later meant I needed to go and point Percy at the porcelain. Job done and I was washing my hands when I heard a sharp hissing sound. There was no-one else in the toilet and it wasn’t coming from me, so what was it? As I carried on washing it wasn’t only my hands that were getting wet; I could feel wetness spreading up my trouser leg. Again, I knew it wasn’t me (yes, I’m sure), so I looked under the basin and saw a stream of water jetting from one of the pipes. I jumped backwards into what was already a large puddle on the floor and checked my trousers. Every male toilet-goer’s nightmare; a large wet-patch all down my leg. I couldn’t leave with this embarrassing stain on my trousers but couldn’t stay and drown.  I made a bolt for it into the bar and explained the flooding in the toilet to an amused waitress who gave me a handful of paper napkins while staring fixedly at my trousers. Even trying to dry myself with the napkins looked suggestive as I re-joined Anne and Victoria. “Drink up, it’s time to leave. Yes, I know about my trousers. No, now. I’ll tell you about it on the way back.” We left with the noise of a very loud alarm ringing in our ears.

A few days before the great Portsmouth flood, we’d trooped into my oncologist’s office at the local hospital for my regular consultation. It was nice enough to see him again but a bit of a waste of time as the results of my MRI scan hadn’t yet come through. It must be the summer holidays as it’s been two weeks since my scan and he explained that I was the third patient that day not to receive their results. He told me my PSA score wouldn’t change much more with this chemo but as long as it stayed relatively level then we’d stick with it. To be honest, I was rather distracted by the fact that the colour of his trousers matched his chair, so it looked like his legs disappeared when he sat down. Little things.

What’s this wet stuff?

I got wet today.
I stuck my head out of the back door and there it was – rain; you remember, millions of tiny droplets of refreshing H2O cascading down onto the parched ground, exploding like little fizz-bang(?) grenades. My head was soon followed by the rest of me as I walked around the garden, soaking up this liquid phenomenon while getting soaked; a broad smile on my face.
I tried talking to the plants but they ignored me, their little faces staring upwards, collecting as much water as they could while they could. How soon they forget that Anne and I were the ones that watered them religiously while the grass was turning a browner shade of hay. Now not even a “Where’s your hosepipe, big boy?” from them. Mind you, the Sun’s come out again so they’ll soon be begging us for a life-saving drink.
The rain wasn’t the only thing that’s been cascading down this week. I had my seventh chemo and was told my PSA score has fallen to 58. Every cloud has a silver lining.

What’s not to like?

You know how there are some days when you shouldn’t have bothered getting out of bed? Well, there can be weeks like that as well. After all the fun and celebrations of June and July there had to be something untoward hiding around the corner, just waiting to cause mayhem. Little did I think that the mayhem would start with a broken tooth. Three visits to the dentist later and I had a new crown (delusions of grandeur?).

Not so bad then except that the dental work meant that my monthly denosumab injection has had to be postponed for six weeks; which was compounded by my temperature of 38.0c on the morning of my seventh chemo; which meant Anne and Victoria had to take me to A&E as the upper limit is 37.5c; which meant we spent three hours in hospital while they pumped me full of antibiotics; (keep up, keep up), which meant my chemo has had to be postponed again; which is a shame as my PSA count has risen to 66; which hasn’t been helped by the increased pain in my back; which led to me having yet another MRI scan; which means I need a drink.

There are bound to be these little hiccups along the way and never has the adage “What doesn’t kill you makes you stronger” been more fitting. Cancer ninjas need a bit of a challenge, otherwise it’d just be boring: so, the tooth’s fixed, my chemo is now next week, my temperature’s down and I’ve had the scan – what’s not to like?