There are certain comments designed not to instil confidence in a cancer patient during a consultation with an oncologist; “I can assure you I am a good doctor,” is one. Another is, “These hormone tablets are the last standard treatment available to you, after that it’s clinical trials. Tell me if you know of any ‘round here.”
Having had both these conversations with my current oncologist I decided it was necessary to get a second opinion. I wasn’t expecting any seismic revelations – “It’s all been a mistake, you don’t have cancer at all”. I just wanted to feel that the people treating me were pro-actively investigating what happens next, rather than seemingly merely going through the motions (no, not those kind of motions).
London has some world-renowned cancer centres, providing innovative treatments and major experimental research. So, having been assessed and approved for an initial consultation, off trotted Anne and me to the unfamiliar sights of South London. We met with a leading cancer Prof. and some of his team. They seem to see me as a viable subject/patient (is that good or bad? – I’m going with ‘good’). We formulated and agreed a plan; I signed up for future trials, then Anne and I went off for a cup of tea. The team confirmed that my standard treatment so far was correct and suitable but that there are additional options they can add to the mix. One of these is the ability to analyse DNA: they can study my genetic helix to try and identify areas of weakness where the cancer is attacking. If successful, they may be able to formulate advanced treatments, personalised for me (again, don’t confuse me with someone who knows what they’re talking about medically).
Such a constructive meeting and such a contrast. Early days with this but shows the difference a team with positive attitudes can make. There’s great work being done out there on advanced cancer treatments and I’m going to make damned sure I’m part of it.
“Yes, that would be great”, “Yes, I’d love to come”, Yes, let’s do it”.
I remember how easy it was to say ‘yes’ before the cancer. Drinks down the pub with mates? – of course. Family get-togethers? -that would be fun. Visit friends? -about time. Go see the Spurs? -try and stop me.
Well now it’s the Alien Inside that’s stopping me. There are so many friends and relatives to see, places to go, experiences to be had, sights to see, smells to smell (within reason), thoughts to be thought. New Year’s resolution of ‘try to say yes more often’ is subject to the whims of the disease. “I’ll certainly try to be there,” replaces “yes; “I’d love to but don’t organise it around me,” replaces “yes”; “Give me a selection of dates and I’ll try to make one of them,” replaces “yes”.
No plans, no holidays booked: how can I? How will I be feeling? Will I be in the middle of another treatment? Illness? Assessment? Consultation? So many questions but there are no definite answers. Make the most of every day and everything. I feel somewhat guilty that I can’t make every ‘do’ I’d like to get to, party I’d like to party (mind you, I can’t remember what alcohol tastes like), or see everyone I’d like to see but I will, over time – just takes a little longer when I can’t immediately say “yes”.
Many congratulations to baby Oliver, baptised on Saturday 9th February 2019. He will always be loved.
Meanwhile, back at my cancer, I’ve been keeping a record of my PSA level every time I’ve given blood. To say the results are erratic is an understatement. A few months ago my PSA measurement would be in the 50’s: more recently it shot up into the 90s. My last few results have been 94, 79, 91, 77 and 84. You remember the tombola stall at most summer garden fetes? To win a prize you needed to draw a ticket with a number ending in a ‘0’ or a ‘5’. My PSA has been recorded as almost every number apart from those, so I still haven’t won a prize. Shame, as I had my eye on that bottle of Blue Nun (though, knowing my luck, I’d probably end up with a tub of Brylcreem or something).
My oncologist says we shouldn’t get hung up on the actual numbers, just follow the trend. Well, if the trend is to go up and down like an auctioneer’s gavel, then my PSA is as trendy as a trendy trendsetter that’s just graduated Trendy College with a master’s degree (what the hell?).
My gum infection is a lot better after having the antibiotics but hasn’t gone completely. My dentist prescribed a course of a different antibiotic but I’m hoping not to have to take them if my infection improves. He thinks it’s just a coincidence that the infection arose the day after my denosumab jab. Hopefully he’s right as my next jab is due in a week.
I keep hoping the radiotherapy will kick in and reduce my dependency on painkillers, but still nothing. Maybe the radiologists’ phasers were only on stun, or they forgot to take the cap off. I’m taking so many painkilling pills at the moment that I’m expecting a raid from the drug squad at any time.
Oh, sorry, let me just look at this email. Yes, another one (fist-pump? Don’t be silly).
Alan Sugar? – lightweight; Elon Musk? – away with the fairies?; Richard Branson? – yesterday’s man. Introducing a new international internet tycoon – me. (You sure?).
I used to sell analytical software ‘stuff’ face-to-face with customers for a living. How old-fashioned; too many people and not enough time. For a bit of a laugh a while ago I designed some T shirts and put them on an online site which also sells the designs on other items. Now I get the odd email at night (really?), over breakfast, in the toilet (again, really?) or maybe down the pub (better).
“You’ve sold a T shirt in the US,” or “An iPad cover in Australia”, or “A coffee mug in the UK”. I can’t get around as much as I used to so, to be honest, it gives me a buzz whenever I receive one of these e-mails and think someone paid out good money for something I designed (aaaahhhh!).
Gotta go, here comes another one.
The prevailing Big Bang Theory offers a comprehensive explanation pertaining to how the universe began. The theory states that it started with a singular event, then expanded rapidly over the next 13.8 billion years to the cosmos we recognise today. Must admit, I prefer hearing about quantum physics from watching Leonard, Sheldon and the rest of the geeks on the TV sitcom.
Had my own Big Bang (careful) one day last week. My treatment universe expanded to include a visit to the cancer centre in Oxford for the Big Radiotherapy Zap (take that you beggar), then rushing back to a closer hospital for the regular Denosumab injection before attending a consultation with my oncologist. He was probably wondering why all three of us were out of breath when we arrived. Victoria and Anne are brilliant at the driving while I’m brilliant in the passenger seat arguing with the satnav and getting us lost. (OK, ok, we got there in the end).
Radiotherapy not kicked in yet but it’s only been a few days. I’m told it could start working within a week, or maybe a month, or maybe six weeks; I’ll just wait and see. Would be great though, because I can then drop some of the painkillers and rejoin Harry Kane in the Spurs’ front line. (What? what?).
With a ruddy great radiotherapy gun, of course.
In spite of the latest chemo, the Alien inside has been keeping himself busy (why doesn’t he just take up tiddlywinks?). Works out my stay in hospital a couple of weeks ago, to reduce the fever and infection, may have had a silver lining. While there, the oncologists sent me for an MRI scan because of the pain in my back and left leg. The results have caused a little concern (no great shakes – everything’s cool). It seems the thought of a metastasis (tumour) compressing the spinal cord keeps them up at night but, good news – no spinal compression for me (lucky, as I like being 6ft tall). However, the tumour is pressing on a nerve root so a mega blast of radiotherapy should do it, as opposed to multiple smaller bolts.
Some close friends have had it and are now doing very well so I’ve been to the specialist centre, had the chat, signed the form, been CT scanned and given a tattooed dot for them to target (I know, but they need to know where to point the thing – be a shame to miss my spine and ricochet off my pelvis). They’re not messing about, I’m back in a couple of days for the zap.
What about super Saturday last week (depending on who you support, but then I’m biased)? Anne and I went to see England thrash Australia at Twickenham in the afternoon, celebrated with a couple of drinks, back to see Spurs thrash Chelsea on TV in the evening. Does it get any better? Only now that the Alien will be getting a good thrashing as well.
Got back last night, later than I’d hoped. We’d had to wait hours for my pills to be brought over from the pharmacy.
When we think of a mini-break at this time of year, we usually mean a few days away in the sun or snow, a short holiday to relax and enjoy. Recently, my mini-breaks haven’t involved either of those; bit of a shame but saves on fares. Who needs sun when you’ve got a temperature above 38 degrees centigrade or snow when your blood pressure is below 90? That was Thursday, start of my latest unplanned holiday to hospital.
“What shall we do today, darling? We could go here, go there, see them, buy that.”
“I’ll just take my temperature before we go.”
“Ah, fire up the Corsa baby, we’re off to A&E – again.”
3 days, 2 nights; drips, needles, regular observations, cannula, even another MRI scan. I don’t believe I had a complete 60 minutes in the whole 3 days without being checked, given treatment or a consultation. Some people knock the NHS but I’ve found them nothing less than totally professional and thorough. My only gripe involves being in hospital over part of the weekend. The MRI scan results caused the oncologists more concern than I’d hoped but they were all away for the weekend, so a plan is still being formulated and I’m told they’ll let me know soon. Nothing so far.
So there we were on Saturday morning; Anne, Victoria, Charlotte and me, waiting for my discharge (no, not that type of discharge); my discharge from the ward. “We’re just waiting on your pills from the pharmacy, shouldn’t be long.” Those words were repeated many times during the next few hours: time enough for life-saving operations to be performed and life-threatening diseases to be diagnosed – we waited for pills; enough time for stitching wounds, curing ailments and fixing bones – we waited for pills.
“Yippeee, the pills have arrived. Thank you all very much for looking after me, now we’re out of here.” Luckily the Ireland rugby team waited for me to get home before winning a historic victory against the All-Blacks, 16:9. Roll on the Rugby Union World Cup.
I took my pills.
“…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.
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.
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.