…..dem bones, dem dry bones:
“Your knee bone connected to your thigh bone
Your thigh bone connected to your hip bone
Your hip bone connected to your back bone”
I’ll bet you’re singing the song now. Catchy, isn’t it? although it may be lacking in some anatomical detail, particularly in my case (again, I’ve no medical training – so take with a pinch of salt). It seems not all of my bones may be completely connected. Though the new Abiraterone hormone tablets continue to do a great job stimulating my appetite and energy levels, the pain in my left hip and groin area has been getting much worse. My latest CT scan showed that the metastases (tumours) across my pelvis and down my femurs have increased. “It’s very much what we would expect at this stage” (- thanks a lot guys).
Would radiotherapy help? Anything that will help me grab more than a couple of hours sleep every night and stop me having to down liquid morphine like Jagerbombs at an apres-ski party is worth trying. So my oncologist did as he’d agreed at our meeting a while ago and contacted a consultant at the radiology department. A week later I was having yet another scan at the cancer radiotherapy centre, for them to measure and plot precisely where they’re going to zap. Like last time, they’ve decided to hit me with one super-blast as opposed to multiple smaller ones (saves on parking charges). Like last time, they tattooed dots onto my stomach, which now looks like the beginnings of a dot-to-dot picture, or that ‘Etch-a-Sketch’ game I remember as a kid.
So, a message to the Alien Inside, “You’d better get ready ‘cos we’re coming after you.”
<<Yeah, you and whose army?>>
“Me, Anne, Victoria and Charlotte, all our friends and rels, and the whole of the NHS.”
Pain almost gone, appetite returning and I can see my ankles again – something’s definitely working. I’ve been on the Abiraterone tablets for two weeks now and they’re clearly having a positive effect. I also met with the palliative pain management consultant. She saw that I was taking more than 30 tablets a day and has managed to reduce them to about 20, (at least I don’t rattle so much now when I walk). Speaking of which I’ve not been able to go for walks over the last couple of weeks as my ankles and feet ballooned after I had the blood transfusion. Nobody told me the whole two new units of blood would bypass all of my major organs and head straight for my feet. My plates of meat were now so large they wouldn’t fit any of my shoes, in fact they’d have been hard pressed to fit into a yeti’s wellies.
Now they’re almost back to normal. I’ve been out for walks again, just short ones but it’s a step in the right direction (geddit?). I’ve got my follow-up consultation with the specialist cancer centre consultants next week, so I’ll see what they have to say.
Saw my oncologist again last week. I made sure it was going to be a more productive consultation than some previous ones, as much has happened since the last time I saw him 7 weeks ago. Since then I’ve had a bone scan, CT scan, issues with the Denosumab jab, a plummeting blood count and a PSA rocketing to 122. Anne and Victoria were the back-up team, ready to pounce on him if he didn’t suggest a constructive way forward with my treatments.
In the event, we didn’t need to use the thumbscrews on him as he was in total agreement on formulating a plan. First, he went through the latest results, surprising us all by saying that, in the space of a week, my PSA had dropped down to 89, (no, he had no idea why either). My scan results were a mixed bag: good news – the cancer hasn’t spread to my organs; not so good news – it has spread further through my bones (but this is par for the course).
And so to the famous plan: 1) we agreed to stop the Denosumab injections, whether or not the last one caused my gum infection and as, to be honest, they had become pretty ineffective anyway; 2) he’ll arrange a blood transfusion for me as my blood count is so low; 3) he’ll contact colleagues in radiography to ask whether more radiotherapy would ease my bone pain; 4) the biggie; he’ll finally apply for Abiraterone, the hormone tablets prescribed when the other forms of chemo have failed. I say ‘apply for’ as he has to receive authorisation from the Department of Health (makes me feel important). I didn’t like to remind him that my ‘second opinion’ specialist cancer hospital had already contacted him, recommending he prescribe Abiraterone as soon as possible.
So the plan may not be so cunning, but it’s been the most positive and productive meeting I’ve had so far with my oncologist. I had to put pressure on him by getting my own second opinion and radiotherapy treatment but I feel he now shares my sense of urgency and finally ‘got his finger out’.
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.
Christmas is coming, Christmas is coming – blink – Christmas is over. It was here a minute ago, with Anne, Victoria, Charlotte and my sister. Quiet but intimate, happy and restful. Then, after all the anticipation, it was gone; Santa taking the batteries out of Rudolph’s nose and packing up all his reindeer for another year. New Year found Anne and me in Spain, darlings, (where else?), with my brother and some friends. At times I found it a little difficult keeping up, though there was no pressure, and we had a great time: just the change of air and scenery makes all the difference.
Slept for two days after we got back, then had a blood test before my monthly Denosumab jab at the hospital. The jab is never a problem, although the nurses check my calcium level beforehand and ask about any dental problems, as the Denosumab can cause osteonecrosis of the jaw (when healthy bone tissue is damaged and dies).
As soon as I said the jab was never a problem you knew this one was going to be the exception, didn’t you? I woke up the following morning with a mouth fit only for mumbling inanities and eating through a straw. Try explaining that multiple times down the phone to the voicemail at the end of each emergency phone number I’d been given. Eventually a nurse returned my call, only to tell me to see my dentist. Seems I probably have a gum infection; not sure yet but we’ll see if a week’s worth of antibiotics do the trick. If not, at least I shouldn’t have to worry about an outbreak of any other mild infection.
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.