A very sincere “thank you” to Charlotte for running/walking the 10k March for Men last Saturday and to everyone who supported her. It shows the power of family, friends and relatives and the difference they can make.
A quiet few weeks?
You may think I’ve just been lying on my back and taking it easy. Partially true but I’ll tell you all about it later. This is just a quickie to let you know that Charlotte is again fundraising to fight Prostate Cancer.
She’s doing the “March for Men” on Saturday 15th June (next Saturday) in London. It’s clearly a personal thing but if you’d like to donate just go to:
http://www.justgiving.com, search for cg2019 and you’ll find Charlotte’s donation page. Absolutely no pressure (really?), just thought you might like to know.
More info about my situation soon (I’ll bet you can’t wait).
Mouracles (pun courtesy of Charlotte) really do happen. Lucas Moura’s hat trick for Spurs knocked Ajax out of the Champions League and propelled Spurs into the final. All his goals were scored in the second half, his third and vital goal being almost the last kick of the game. They said it was impossible – nothing’s impossible when you believe.
“It’ll probably get worse before it gets better.”
They weren’t kidding. I’m writing this blog post whilst sitting in an extremely comfortable, super-duper, whammo, state-of-the-art armchair, (Vorsprung Durch Techchair). The headrest reclines at the touch of a button, the footrest extends with an assured purr from the hushed motor. It is the latest example of easy-living technology for the mobility challenged – yet I can only sit in it for 10 minutes at a time. After that the aching in my left (gammy) leg becomes so overwhelmingly painful that I need to get up and hop around the room like a scalded Easter bunny (yes, they do exist). It’s the same with any chair at the moment; my leg won’t let me sit down long enough to relax.
It’s been nearly three weeks since I had radiotherapy on my left leg and hip. Those final words from the radiotherapist after my zap still resonate with me every day, “It’ll probably gets worse before it gets better.” Well, it’s certainly got quite a lot worse so I’m trusting it’s going to get a whole lot better soon, in time for me to score the goal that gets Spurs into the Champions League final. Meanwhile I’m playing my own version of musical chairs, moving from one to another when the pain starts. At least I’ll win, as I’m the only one playing.
In the middle of all this I had another blood test and my PSA level has risen to 122, so now I have two targets to smash – and smash them I will.
…..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.