A Prostate Cancer Journey

Cancer treatment as it happens!

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What fun – prostate cancer, and the treatments!

 Oh, where do I start?  British male, born 1944, which makes me … ummm … 73!  Normal sort of person, really!  Living in Jersey, in the Channel Islands, and writing my first ever Blog on slightly challenging software I’m slowly learning how to use!

MEDICAL BEGINNINGS

Back in 2007 (so long ago now) I went to see my GP, as I was having some bladder issues.  More specifically, ‘urgency’/lack of control, especially for a couple of days or so after long haul flights … but never on the way home, just after the outbound!  Weird, eh?  And no dramatic events when at home!  Anyway, some medication helped a bit, and a PSA test [https://prostatecanceruk.org/prostate-information/prostate-tests/psa-test] showed an elevated reading of 5.04.

Hot Tip:  Get tested, genlemen!

A further test in 2008 gave a reading of 5.37 so clearly something was not right.   Thus followed an appointment with the [then] Consultant Urologist, and after the inevitable ‘finger test’, he put it down to ‘Stress’ … yeah, right, like I fly many thousands of miles a year, and don’t think about it at all.  Thanks for your help!

Question:  Should I have pressed the point, since he left me with a feeling of uncertainty. I left unconvinced.  What about the elevated PSA, Doc?!

So, in 2010, I had my ‘usual’ attack on arriving in the USA.  The prescribed meds didn’t solve anything, and we sort of left it at that.  Incontinence pads as a precaution for the first couple or three days, and things would then return to normal.  Still no issues when at home, so I stopped worrying unduly and just accepted the strange (but temporary) inconvenience when abroad and devloped a comprehensive knowledge of the location of ‘restrooms’ in the local area.

After some further episodes over the next few years, again usually only when travelling West-bound long-haul [although there was also a very bad one on a trip to Malta – outbound only, of course!], in 2016 I went to see my outstanding GP for another routine PSA test.  PSA now running at around 13.5, which is definitely NOT a good number, and he kicked things into a higher gear.  Thanks, Mark!!

He sent me to our new and excellent Consultant Urologist (the sort that actually looks for problems, and their solutions)  There then followed an ultra-sound scan in early 2017, where it was discovered I had a large [4cm!!] bladder stone!   Ah, so that gets fixed in April 2017, thanks to ‘Laser Cystolitolapaxy’, otherwise known as sticking a laser wand up my urinary tract and blasting the stone into submission.  I do not recommend this procedure unless actually needed! After an uncomfortable day/night, with the debris flushed away, I walked gently and slowly home from the Hospital!  A few days of urinary discomfort followed, as things were a bit sore ‘down there’, along with predictable blood in the urine.  However, not surprisingly, this solved my bladder promlem, although I now take a daily pill (Tamsulosin) to facilitate matters in that department, and I have since flown 54,000 miles without any problem at all!

Question:  Is this too much information, or something people need to know?

However, all was NOT perfect, as my last PSA test had indicated.  New medication for the urinary issues prescribed, post-op assessments and further PSA tests.  Consultant then arranges for MRI scan and a biopsy of my prostate.  We’re now in November 2017, and I get the procedures.  The MRI scan is not a lot of fun, as the machine is awfully loud (the headset playing Radio4 didn’t help a lot) and there’s an overhead spotlight right above my face!  Furthermore, the ‘transrectal biopsy‘ was singularly unpleasant … imagine a car’s gear lever stuck up your rear end, while the operator tries to shift gear as quickly as possible whilst also taking small bites out of your internal bits.  I’ll leave that there!  A few days later, that end returned to normality!

Question:  Is this also too much information, or something people need to know?  😐

DIAGNOSIS.

Anyway, the upshot of all that is that I have won a small prize in the ‘lottery of life’ … intermediate risk prostate cancer, with Gleason scores a mix of  3+4=7 and 4+3 =7, apparently.  See Google for an explanation!  It seems that the cancer is fully contained within the prostate, which is a good thing.

Note:  Apparently there are 40,000 new cases per annum in UK.  Could YOU be 40,001?

Yay, I have cancer, at the age of 73.  Considering I smoke 20/day, and have done since about 1963, it’s amazing it’s not lung cancer … perhaps I have that to come later, although my aunt managed 20/day until she was 94.  Whatever.

I found myself surprisingly relaxed about the news, largely because I had already developed complete confidence in my new Consultant, as I already have in my excellent GP of the last 12 years.  So, here I am … apart from a few minor peripheral things, like back pain for 40 years, I’m going to be a serious patient.  Oh, well, nothing to do but get on with it.

There is a rider to this.  My brother-in-law had the same problem a couple or four years previously.  His treatment didn’t go terribly well for the prostate C, which had escaped into the undergrowth, but rather got overtaken by the brain tumour they discovered.  Some people get a bad hand of cards, and he certainly did.  I may return to his story later on.

NEXT STEPS


December 2017.
I start getting assorted information by post about my impending trip to the UK Mainland for treatment.  Yes, we have a reciprocal agreement with UK, so I will be flown there and accommodated for a month while they do the necessary.

I said my Consultant Urologist is good.  No, he’s excellent.  Next step is another MRI scan, this time ‘full body’, to ensure there are no other lurking cancers.  Thorough, or what?

January 2018.
Full-body MRI Scan.  This time I took some eye-shades, kindly provided by American Airlines, to avoid the spotlight!!  I still emerged, some 30 minutes later, with my head ringing from the noise of the MRI machine – it took about 24 hours for my head to feel normal again!

Three days later the Consultant phoned me at home at 1900 (or 7pm if you insist) to confirm there was nothing else hiding in the undergrowth … now that’s a personal and caring service!  Thank you, Sir!.  Indeed, the prostate cancer is definitely totally confined to that organ, so another positive.  So far so good, as that will simplify the subsequent treatment[s].

He’s making arrangements for me to go to Addenbrooke’s Hospital, in Cambridge (UK) for “External Beam Radiotherapy”, which should hopefully zap the cancer.  I do, however, start on a course of ‘androgen therapy’, involving a slow-release injection in my buttock, which is designed to … reduce my masculinity, and thus the size of the exclusively male prostate.  I also have some medication, which I call my ‘Girlie pills’, for 21 days, for the same reason.  Side effects can be varied and interesting, but I haven’t really noticed much, apart from a complete lack of libido [which at 73 is no big deal], fatigue and a bit of insomnia.

Kindly they will gear appointments around a holiday we have booked in February/March, and another one in June.

Where are we now?  Oh, yes ..

February 2018.
Why have I not heard anything about my treatment in the UK?  I call the General Hospital (Travel Office) on 14 Feb to see if they’ve heard anything, and ask if they can poke a stick somewhere [NOT in me again please].  Very quickly [like, within a few hours] I’m advised that I have a pre-treatment appointment at Addenbrooke’s ‘next Thursday’, and can I call in to the Travel Office to sort the details.  “See you in the morning”, I say.  And I do.

Lovely helpful staffer sits me at her desk, books my flights to and from UK and [the next morning] sends me my ground transfer details.  Essentially, I am on the early [0720] Flybe flight from Jersey to London City airport (LCY), where a taxi will be waiting for me to take me to Cambridge … and do the return, of course.  A long day is in store – the return flight leaves LCY at 1905.

I shall update when I’ve done that, next week!!

Question:  I wonder what would have happened if I hadn’t phoned?  My BiL enquired some months after he started his ‘Girlie pills’, and apparently the radiotherapy should start about 3 months after starting that treatment.  He ended up waiting nearly 6 months, presumably as his file had slipped to the bottom of a pile.

Hot Tip:  Keep your own records [which led me to create this blog], and chase them when necessary.  ‘They’ have dozens/hundreds of patients, but this is YOU.

22 February 2018.
To Addenbrooke’s Hospital.  Taxi at 0545 (!), followed by the Flybe flight to LCY, and a nice taxi to the Hospital, where we arrive just after 1000 … for my 1030 appointment for a CT scan and meeting with my Consultant.  So far so good!  A fair bit of waiting in corridors with people who look pretty ill and old.

A brief chat with the Consultant, who gives me the forecast of success and describes possible after-effects.  Not hugely chatty, or encouraging, but I want his medical skills rather than a social interaction!  I have the CT scan, lying very still while this giant technical donut passes over my body doing its scanning thing (silently, on this machine!).  Then some little red lights come on,  to show the staff where to put the 3 tiny tattoo markers to ensure I’m properly lined up when it’s time for the radiotherapy.  I looked for them, but couldn’t find them, but I’m sure they’re there somewhere!  A brief check with Reception about the planned long stay – I’m given a daily treatment programme which simply won’t work, as it starts just 3 days after we get back from holiday!  Excuse me, we need to re-group and do laundry etc. before I set off again.  She returns to the computer and re-programmes me for a week later, commencing 19 March for 22 days in total … but those are Treatment Days, and as they don’t do weekends I’m there for 4 weeks including the 4 days of Easter.

As the Hospital environment is not exactly ‘welcoming’, and as I can’t get either ‘phone signal or WiFi, I ask her to call for my return taxi to LCY.  ‘My’ Jaguar turns up some 10 minutes later, and off we go!  Arriving at LCY shortly after 1300, a quick wander around tells me it’s best to be ‘Airside’, so off upstairs, through Security [efficient] and find a seat.  The only thing I can’t find is WiFi connections, although my ‘phone did work!!  And wait … and wait … for the best part of 6 hours.  Thank you, Amazon, for inventing the Kindle!  Eventually the Gate is called, up and away back to Jersey, taxi home and through the front door at 2100.  A lonnngggg day!

23 February 2018.
Pop into our Hospital to talk to the Travel Office about my flights for the next trip.  Five minutes later my flights are booked, and the ever-helpful Maggie is going to look for information on my accommodation while I’m up there.  That has apparently changed since I was first told, but of course the Radiology Receptionist doesn’t handle that side of things [possibly].   Indeed, I wonder who does?  There is virtually NO information forthcoming from either Hospital, so I’m having to nag my way through every aspect!  I know I have a bed, but other ‘domestic aspects’ are unclear.  It’s apparently Self-catering in a flat with a shared kitchen  (good job I can cook), and a 15-minute walk to the Hospital (good job I’m still mobile), but are there laundry facilities, or do I have to pack 4 weeks of clothes?

Anyway, that’s the update for now.  Having picked up my repeat prescriptions, including my final “Girlie injection”, and made an appointment with my GP for that to be administered in a couple of weeks, I shall now turn my undivided attention to getting ready to go on holiday on Monday (with another 0545 taxi start !!).

24 February 2018.
OK, extensive Googling (since nobody is telling me anything), I may be living somewhere here for a month  …
http://www.cambridge2000.com/cambridge2000/html/2010/PA3018367.html

Not quite sure how I’m supposed to live/eat there, but I will meet that challenge when it arrives.  Certainly a bleak month is in prospect!

Sanctuary-addenbrookes.co.uk seems to be what I’m getting, in Kingston House … probably.  I do wish someone would tell me, like even how to get the key to the door!  But it seems to have WiFi [at a small cost] and laundry facilities, so I seem to be survivable on that front.  Communication in detail [that essential aspect] is totally lacking from both ends.  Hello, I’m an OAP you know, and being dumped in the Addenbrooke’s Desert, with a 15 minute walk in all weathers for my daily treatment!  And where am I supposed to buy this food to self-cater? … miles away, it seems!  Seriously NOT impressed at the moment, especially having to research this stuff myself.  WHERE is the information a patient needs, for a month in a ‘foreign country’?  I’m swimming in the dark, frankly, and just glad I was able to shift things a week after our return from holiday.  I may be able to get some useful information during the week I have before entering the bleak environment of Addenbrooke’s. I think “quite angry” is my current feeling … like, nobody actually cares about ME, the patient, other than the mechanics of treatment for my cancer.  Harrumph!

Oh, and welcome Steven Fry to the Prostate Club … although I suspect he may be going Private for his treatment.  Good luck, anyway, Sir!

26 February 2018
Email from the Travel Office … “I have had confirmation from Addenbrooke’s that your accommodation has been booked in Kingston House .  There are shops nearby and the accommodation is en-suite with a sharing kitchen diner with fridge/freezer washing machine Microwave & kettle. It’s all self-catering so you will need to bring towels and buy own food which you can claim back up to £10 per night.   They have also advised that Kingston house is around a 10 minute walk away from the hospital. They will be sending out information on Kingston House and will also be booking your taxi to pick you up from the airport and will be sending you the taxi reference shortly.”  

Oh, and attaching a skimpy Addenbrooke’s/Sanctuary leaflet about Kingston House, and another guide to connecting to WiFi (£15/month at 8mbps).  And that, Dear Reader, is the limit of the provided information!! All I got from Addenbrooke’s was a standard letter covering another copy of my Treatment Schedule and my taxi bookings!!  Nothing about ‘domestic arrangements’ at all.  Thanks, NOT: bloody infuriating!!  Back to researching everything myself, and a good job I have a computer!

And now it’s time to go on holiday for 10 days in somewhere warm!  Not everything on here is negative!!

IMG_0670

9 March 2018
Home again, and having asked the Travel Office to chase Addenbrooke’s for the provision of some ‘domestic’ information, I visited Macmillan Cancer Support (Jersey) where I find they have some information folders for ‘resident patients’ over there.  Very nice and helpful ladies, and some useful bits of information in the folders too.  WHY doesn’t our Hospital have something like that, and why do I have to go and research things for myself?  The sting in the tail is that the Accommodation Office there is only apparently open from 1400-1630, which is less than helpful when arriving at about 1000 on the 19th dragging a large suitcase!  Oh, and my first treatment appointment is at 1618 [precisely?], so that’s going to be a very tangled day.  I wonder whether I will get the chance to buy some food at some point, or just consign myself to a Burger King dinner in the Campus Food Court?  More chasing around to be done next week!!

12 March 2018
Nobody has answered any emails, or got back to me, except Macmillan (Jersey).  Says a lot for Healthcare these days, or possibly their workloads.  Oh, wait, this is the administrative side … I have my appointments, so everything is OK.  Yes?  I’m just concentrating on generating a list of things to pack for a month of self-catering in a foreign land!

13 March 2018
A day of emails, generating clarity at last!  The Accommodation aspect (1400-1630) is what most people would call “Check-in is only available from …”.  If only Sanctuary had used that terminology in the first place, instead of “You can collect the keys between 1400 and 1630” it would have been clearer!  An attempt to get Radiology Reception to collect the keys for me failed;  “Not until 1400 …”   Anyway, Sanctuary answered my email and, after a brief exchange, I have won a small prize!  Early Check-In, as my room is not being used the previous day!  Yay!  That now explaines the 1400 aspect.  Just the walk from Radiology Reception to Granchester House (Sanctuary office) to Kingston House, which is about 15 minutes in total.  I’m really glad I have 4-wheel spinner suitcases – imagine the scenario for a less-mobile OAP having to carry his/her worldly goods for a week/month across the site!

Which brings me to the massive size of the “Cambridge Biomedical Campus”.  As luck would NOT have it, Radiology is about as far as possible from the accommodation!  From Kingston House {K} in the top left corner of this map to Radiology in the bottom right corner!  I’m sure the exercise will do me good, and of course the whole site is No Smoking so that will help too!  Is there a wine bar on site? 🙂

Screen Shot 2018-03-14 at 10.41.26.png

Right, back to generating my packing list (yes, bring your own towels!).  I’m so pleased I wasn’t supposed to be there yesterday, with just 3 days to get organised after the holiday [and jet lag!].  My fault for being a control freak, I guess … or is that just someone who tries to be organised?

15 March 2018
My 2nd and last androgen therapy injection – Decapeptyl.  That apparently lasts for 3 months [although the effects may last for up to a year] and it didn’t hurt at all.  Thanks, Doc!

And, just received the good news that my B-I-L has been formally discharged by our Consultant, about 4 years from when his prostate case started. Sorted!! Hope mine goes as well!

Oh, and a link to this Blog has been published in the Jersey Evening Post and a couple of other regional papers in the UK, thanks to my favourite columnist, Peter Rhodes.  I may yet become famous!!  😀

I guess that, unless you want the details of me packing my suitcase, the next update will be on Monday, from Addenbrooke’s.  Thanks for reading this far.   You can subscribe to e-mail notification of updates, if you’re really interested … button top right at the beginning of the Blog.

18 March 2018
Oh, snow forecast for overnight at both Jersey and London City airports.  I hope I get away OK at 0720 tomorrow morning.  A touch of nervousness developing!!

To Addenbrooke’s, and Week 1

19 March 2018
Another early start to the journey, made worse by the fact that I didn’t sleep a wink last night.  So up at 0400, and start checking weather forecasts and airports.  And, as if on cue, it started snowing gently in Jersey!  However, all went well and, after a slight delay for de-icing the aircraft, Flybe conveyed me safely to LCY where I eventually met up with my taxi driver for a safe and snow-free run up the M11.  It is, however, very cold and with a stiff breeze to compound matters.

Accommodation at Addenbrooke’s.  Having dropped our other passenger at Radiology (he was doing the one-day round-trip from Jersey) I was conveyed to the Sanctuary accommodation office, where I drew my keys for Flat 24B in Kingston House.  About 400 yards of wheelie suitcase later, I operated the electronic key to the front door, ascended in the lift, and moved in.  I was pleasantly surprised.  Exactly as shown in the link upthread, spotlessly clean, very well equipped and in ‘almost new’ condition throughout.  And towels ARE provided!!  Despite feeling like death after the sleepless night, by 1200 I was dragging myself across the Campus to find the Food Court and visit the M&S Simply Food there (nobody mentioned that facility, except Macmillan) to get some ready meals (by and large ‘local shops’ are not needed, wherever ‘local’ might be!).   It was lunchtime, and the place was heaving!  I won’t make that mistake again.  However, for someone self-catering, at least there’s a good range of foodstuffs available … I was thus stocked with essentials for the first couple of days.

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I’m on the top floor of the 3-storey bit at this end: kitchen and sitting area on this side, and the 2 bedrooms on the other.  Flat 24 appears to be the “Jersey Suite” for Islanders coming here for treatment – the notice boards are decorated with posters of Jersey!  And with the exception of one day I’ve had it to myself so far.

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First Appointment.  Scheduled for 1618, but it actually ended up around 1700.  Apparently slippage in Radiology’s busy/non-stop schedules is not unusual.  Charming staff in all areas, as I’m reminded to drink my 3 cups of water to ensure the bladder is in a consistent state for treatments.  They don’t want to zap the wrong bits!  A brief chat, then on to the machine to check alignments.  Foot, knee and head supports are adjusted and their peg locations noted.  Then, as during the last visit, the “Flying Donut” gets to work, rotating various bits of equipment around my pelvic area.  Totally painless, of course, it’s just super-Xrays targeting the cancer.  I gather there is also a CT scan as part of the process, to ensure perfect alignment.  Some 15 minutes later, I’m done, and start navigating my way home to Kingston House … which is about a 10-15 minute walk, depending on how fit/young/keen you are (I settled for the 15).  And after a quick M&S meal, I crashed into bed at around 1930 … completely exhausted to the point of tottering, and with a bit of a headache.

20 March 2018
I slept for an unbroken 10 hours, and then did another 2 just to make sure!!  😀

A leisurely M&S, avoiding the lunchtime rush, stocked the fridge and larder for the next few days.  And then, Appointment #2 (of 22).  Due at 1224, I finally made it onto the machine at 1305 – I gather one of the 8 (?) machines was out of order, so there were a lot of people in the waiting areas.  On this occasion I was only on the machine for about 5 minutes, which should apparently be the norm from here on.  I also successfully navigated my way from the Concourse (aka Food Court) all the way indoors through the Main Hospital to Outpatients and Radiotherapy.  It’s all well signposted.  This will be handy when it rains, as I can get to the Concourse in about 5 minutes outdoors (OK, maybe 7?  I must do some accurate timings, to inform others).

And that, Dear Reader(s), is me settled into the routine for the next 4 weeks.  Some 5 minutes daily, plus 30 minutes (+) preparation time with my 3 cups of water.  Treatments on Monday to Friday, usually in the afternoon, and with weekends and Easter off for good behaviour 😉   I’ll update if any interesting, amusing or useful happens.

Bye for now from Patient 4021728 🙂

21 March 2018
With a late (1624 precisely) appointment, I use the morning to venture onto a bus on my own for the first time in decades to visit Trumpington and the large Waitrose supermarket there.  Typically, I just missed  the outbound bus (the #25 from Addenbrooke’s bus station) and repeated that on the way back!!  It seems to run on a 30-minute cycle, so loads more waiting around: I shall time my journeys more carefully in future, having now located the timetable on-line.  However, I acquired a few more groceries and (importantly) 3 bottles of wine.  Life is looking better!

I timed my appointment walk today.  Five minutes to the Concourse/Food Court and another 7 through the warren of the Hospital to Outpatients and Radiotherapy.  I was a bit early, but I have my Kindle to pass the time.  Thirty minutes before the scheduled appointment, and already started on my “3 cups”, I see the display saying they’re running 40 minutes late.  Damn!  It was around 1700 when I was eventually summoned, and settled onto the machine and lined up.  It starts … and then stops.  “Houston, we have a problem.”  A technician is summoned and, a few minutes later, things resume normal operation.  By 1725, I’m finished for today, having spent quite long enough lying motionless on the hard treatment bench!  I’m on at 1654 tomorrow, so no idea when that will actually happen … the Staff and the Machines work non-stop every day, but any little delays will accumulate.

And Hello, Sam … News travels fast!  Welcome to the Club, and try not to worry!!

22 March 2018
A Review appointment has been brought forward from next week, and I meet my Radiologist (I hope that’s the right title, Andrew?) for a few questions and a general chat.  Right at the start he explains there’s nothing sinister about the re-scheduling, which was a relief!  Everything appears OK, and I should live for another 15-20 years! I should be so lucky, but it’s still nice to hear ‘they’ are confident of the outcome. What a nice chap.  Then off to my usual 5-minutes session on the Linear Accelerator (I’ll do some pictures at some stage), which again is running behind schedule.

23 March 2018
Yes, more delays.  My 1624 turned out to be around 1705.  Given the non-stop activity, it’s not surprising that by the time they get to #36 in the day’s programme there’s going to be some slippage.  I shall stop arriving early from here on!!

And now I have the weekend off, for a bit more food/wine shopping, and do some laundry!  It’s really quiet around here – the builders aren’t building and the assorted staff and students are doing whatever they do at weekends.  It’s almost a post-apocalypse scenario outside as the sun sets:  lights on in the various office buildiings, but nobody in.  In my block of c. 40 flats there appear to be 5 occupied, and the one opposite seems to have just one.  It’s just spookily silent!!  However, I understand that on Monday there will be someone new sharing Flat 24 with me (separate bedrooms, en-suite, but sharing the kitchen/living room).

Treatment Week 2

26 March 2018
I thought you might like to meet my amazing friend, Linear Accelerator Two, known locally as “LA2”.  About £1m worth of machine, contained in a £1m room with lead-lined walls and banks of computery and associated monitors (8?). There are seemingly 6 such devices, and another 2 of which I know nothing!  This is how it goes …

The bed has a collection of moveable fittings to ensure the patient is in the right position: my pre-sets are on file and ready for me when go in (head, behind the knees, and feet).  The collection of head masks on the wall is quite scary, and makes me realise how lucky I am in this game!  Once I’m installed in the correct position, assisted by a line of green laser light and my previous tattoos, the bed elevates to the axis of the LA, and the 4 elements then extend from the wall to the required location (in my case, obviously that’s the pelvic area!).  On the word “GO” the elements rotate, make assorted weird noises, and do their thing.  After the initial alignment using my tattoos, the first thing the staff do is a CT scan to increase accuracy (moving the bed fractionally as needed) and then zoom in to do the final adjustments before bringing the Tumour-Destroying Death Ray into action!  Utterly painless.  I have learned to wait until the bed is lowered before leaping off into space!!  Five minutes and … done.  “Same again tomorrow, then?”  😄

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I shall spare you domestic updates, after that excitement!

26, 27, 28 & 29 March 2018
Just a routine week of treatment.  The usual 5 minutes or so on the LA, although for a bit of variety i’ve had 2 sessions on LA2, one on LA1 and one on LA6!  And one appointment was at 1230, instead of the usual 1600+ … and next week they’re all at 1500.  Oh, the excitement of it all!  I love the way the staff come into the Waiting Area and say “Mr Patient, you can start drinking your 3 cups of water now.”  😎

No side effects (yet), but feeling rather tired.  Not sure whether that’s treatment-related, or just the boring existence here.  However, almost half-way through now, and having 4 days off for Easter.  Bye for now.

Treatment Week 3 … and past half-way!

I survived the tedium of the 4 days of Easter, helped enormously by a family visit (my son, his wife, the 2 grandchildren and 2 black Labradors!) and an outing for lunch.  Thanks, kids!

Tue 3 April 2018
Just another session on LA2, although I was told off for not keeping fully hydrated.  It would seem that my ‘3 cups of water’ before treatment were rapidly absorbed by my body, so my bladder wasn’t filled properly.  Ooops!

Wed 4 April 2018
Same old thing!  I was well hydrated, and thus needed to rush to the toilet as soon as I was off the machine!!

Admin Note.  I have a new neighbour in Flat 24, a gentleman of 77 from Jersey about to start his 4 weeks of boredom.  Speaking as a youthful 73, I can see him struggling a bit with this self-catering lark.  It seems very wrong to leave us elders to our own devices like this.

However, his Jersey Senior Citzen’s bus pass seems to work fine here!!  😎  I wish I had acquired one now – the £1.70 each way to Waitrose for groceries/wine is starting to add up!!

Thu 5 April 2018
Today I was additionally treated to a ‘Follow-up’ consultation to ensure everything was OK from my point of view. “They” have no idea what the treatment is actually achieving … that will be determined in a couple of months, once my battered prostate has recovered and I have another PSA test.  However, everyone (including me) is confident of a satisfactory outcome.

Fri 6 April 2018
Another day, and another dose of treatment by my friend LA2 and the lovely staff. Bought more groceries, watched TV, twiddled my thumbs, chatted to my wife on Facetime.  And another week ticked off – just one and a bit to go!

Tbought for Today.  As I wandered through the corridors of Addenbrooke’s for my daily treatment, I was particularly struck by the number of unfortunate people.  Severe mobility issues abounded, and some were barely capable of tottering along slowly on their way for treatment.  It really made me recognise how extremely lucky I am to just have a relatively minor cancer.

Treatment Week 4 … nearly done!

I wish it would stop raining – it’s quite depressing!  However, on the plus side, there’s just the usual 5 treatments this week, and then the last 2 next week … with the final one nice and early (Tuesday 17 April at 11:12) giving plenty of time for the taxi to London (City) airport and the 19:05 flight home.  The end is in sight!

Nothing really significant to report, apart from the fact that I don’t seem to be experiencing ANY  of the possible side-effects … except a slight change in urinary function (more frequent, but ‘low flow’).  That apparently clears up in a few weeks.

Monday:  routine appointment, although again told about keeping hydrated.  The 2 litres a day is a nice concept, which would have me standing near the toilet all day!  Tuesday:  managed to reschedule for an early appointment, so had a day out with my son who had driven some 300 miles to take us to the Imperial War Museum at Duxford.  Wednesday:  The 1512 appointment became c. 1615, as LA2 was down for servicing and everyone is going to LA6. … and then…

Thu 12 April 2018
Having had my original bladder issue fixed back in Jersey, the treatment here is certainly now having a bit of an impact.  Essentially it’s “frequency/retention”.  Have a cup of coffee, and a few minutes later it’s time to go again!  Which, of course, makes the mandated “3 cups of water in 10 minutes” slightly challenging.  It also means that keeping hydrated is tricky, since as soon as fluids get into my system they want to get out again!

So, today, I was asked to drink four cups before my treatment, which I duly did with the caveat “I hope the treatment isn’t delayed, otherwise we will have to start all over again!”  Anyway, I was on time on LA2 (if not a bit early?  I didn’t check), had the treatment and just made it to the loo afterwards!  And then went again in the Food Court toilets some 5 minutes later, and again 10 minutes later when I got back to the flat!  This is becoming an ‘interesting’ exercise in bladder management!

Note:  Again possibly too much information, but anyone reading this who goes for the treatment should be aware of the potential side effects.

And meanwhile, Addenbrooke’s continues to ‘enjoy’ rain, drizzle, wind, fog and low temperatures … as it has for most of the last couple of weeks.  Depressing is barely the word for it!!  Take me away from here: I don’t like it!!

Fri 13 April 2018
That’s the last full week ticked off!!  My 1500 treatment was on time, and after my 4 cups of water managed to make it safely to the loo afterwards!  I was advised that my bladder was smaller than was desirable, but not sure how I can fix that.  Certainly drinking 2 litres a day is borderline impossible!  Of course, there may be some residual issue relating to my 2017 bladder stone as well.  Oh, well, I do what I can, and “they” perform magic!

And now a boring weekend in view!

The last bits at Addenbrooke’s … time to go home!

Monday 16 April 2018
The weekend was as tedious as I expected!  Mercifully, the Commonwealth Games at least ensured there was something on TV, and the weather was decent.  Side effects remain as before … frequent passing of urine, with ‘slow flow’ (“often worse at night”) and fatigue.  Yup, last night I went at 2100, 2200, 2300 and 0015!  And not surprisingly, I’m tired too.  However, most of my packing is already done (just the one suitcase) and my food stocks are running down almost perfectly (i.e. no waste).  So just the 1500 treatment today, and the last one tomorrow at 1112 before getting the taxi to the airport.

Annoyingly, Flybe isn’t letting me checkin on-line for the flight … technical issues at their end, I suspect.  However, I’ve also discovered that Jersey booked the return flight as “Just Fly”, so I’ve had to cough up (temporarily!!) £59.50 for baggage and seat allocation!

Tuesday 17 April 2018
Last treatment (huzzah) at 1112 (on time), taxi to London city airport and 6 hours of sitting around (boring!!).

Airside Smoking Area … almost the only seating if you are stuck ‘Land-side’

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The ‘Zoo’ of Departures.

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Wednesday 18 April 2018
Return to normality, and start attacking a month’s mail!  I have been given a post-treatment advice letter (nothing too dramatic). Also (sent to home) a ‘Review’ letter following a consultation on 9 April, noting that I was “tolerating [the treatment] extremely well”.  Again I seem to have been lucky!  So now I just wait for the minor [bladder] side-effects to subside, and for the “Girlie Injection” effects to fade away … and wait to hear from our Consultant here about further PSA tests and post-treatment review in a few weeks.  It all seems to have gone very well!

Further updates in June, I guess. Thanks for reading!

Admin Follow-up

Thursday 26 April 2018
I’ve just written a 4-page brief (with maps and pictures!) as a guide for future patients, hopefully drawing together the Domestic bits of information from both Hospitals, Sanctuary Housing and personal experience.  Jersey is considering giving a copy to all future Off-Island Treatment patients at Addenbrooke’s, and Macmillan Jersey has a copy too.

Meanwhile, Jersey Hospital (Maggie again) are processing my claim for £10/day food provision, and my £59.50 for Flybe luggage.  With luck I’ll get a cheque in the post in a month or so!

Progress?

Sunday 29 April 2018
Can this be true?  In just under 2 weeks since my last encounter with ‘External Beam Radiotherapy’, it seems that things are settling down ‘Down There’!  Bladder function is returning to normal (for a given value of normal).  Less frequent, decent flow, and just 1 or 2 nocturnal trips to the bathroom.  Furthermore I can now often stay awake after 2100, and am getting a decent night’s sleep for the first time in many, many, weeks.  It seems I have been lucky again, and have achieved the ‘recovery predictions’ a couple of weeks early  … Long may this continue!!

Next Steps

Thursday 3 May 2018
I am clearly not forgotten.  The Appointments Department writes to invite me to an appointment at the Urology Clinic at 1100 on Tuesday the 8th.  Thanks to our efficient postal service here, I received the letter on Friday 4th, thus beating the 3-day delivery gap associated with the weekend and Bank Holiday Monday!  Otherwise I would have missed it completely [our delivery is around 1300].

Tuesday 8 May 2018
Appointment made [slightly early, thank you!] with a lady who I assume is a Nurse Practitioner.   We talked through the treatment, and any side effects or changes … and everything seems to have gone very well.  The only slight negative is the side-effects of the androgen therapy (the “Girlie Injection”, aka Decapeptyl) and my body’s ‘repair activity’ after the radiotherapy.  This apparently might take up to a year to wear off completely.  Eeeek!  Still, at least it doesn’t suggest an underlying problem .. like advancing years!!

We made an appointment with the Consultant for 28 June, and I’m also given a ticket for a Blood Test during that week at the General Hospital [where I expect to find long queues!].

So far, so good, it seems … I can now concentrate on holiday planning again!!  I am steadfastly refusing to let this issue get to the front of my thinking.  It seems I am ‘lucky’, and I’m in good hands, so there’s no point in agonising over it.  I know others are less fortunate, with late diagnosis or other forms of cancer, but I’m sure the same principles apply … live your life to the full while you can.

Monday 21 May 2018
The Admin side is now sorted, thanks to Maggie [again!].  I’ve had my £290 grant to cover my self-catering food costs at Addenbrooke’s, and Flybe have refunded my £52 for the baggage on the return flight.  I shan’t lose any sleep over the £7.50 seat assignment fee – life’s too short to worry about that, and anyway it was a comfy flight with 2 seats to myself!

I’m getting the feeling that I’m not quite as tired as I was a week or so ago:  Is the Decapeptyl starting to wear off?  Is my body repairing well?  Am I just imagining things?  I’ll see how I feel after 5,800 miles of flying next month … and that’s just the outbound journey, although there is a night-stop en-route!  So, back to holiday planning full-time, and battling with airlines that keep changing their flight schedules, whilst also remembering I have an appointment on 28 June!

Wednesday 20 June 2018
Hello again!  Back from 2 weeks’ holiday in sunny Arizona with a couple of observations.

Were they ‘hot flushes’, as a reported side effect of the Decapeptyl androgen therapy, or just a consequence of often moving between 40º+ C outdoors and cold air conditioning?

In the hotel car park, I passed [slowly] over a speed hump, but at an angle.  The resulting ‘jiggle’ of internal bits led to a realisation that my prostate is indeed still battered, some 2 months after my last radiotherapy treatment.  I wouldn’t say it hurt, but it definitely felt ‘sore’ down there!  I ensured I met the humps straight on after that.  🙂

Oh, and ‘bladder issues’ on the trip were non-existent. That involved 2 days of flying to Arizona from Jersey [with a night-stop in Dublin on the way], and about 36 hours of non-stop travel to get home. 11,000 miles with no problems at all.  Huzzah!

(Map courtesy of http://www.gcmap.com)

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Time is the healer, along with the brilliant skills and technology of the medical profession!  Thanks, everyone!

Monday 25 June 2018.
To the Blood Test department at the Hospital, where I arrived shortly after they opened for business at 0900.  Fifteen people already in the waiting room – I grabbed the last available seat!  Eventually called at c. 1000 for the extraction of some blood for testing: painless, thanks to a skilled practitioner.  I had a ticket with a barcode, which identifies me to the computer and then tells the staff what is needed … “PSA test, please.”   I’m hoping my Consultant will have the result in time for our meeting on Thursday.  This will hopefully be the first indication of progress, although I doubt I’ll beat my BiL’s last test reading of 0.01 PSA!!

Thursday 28 June 2018.

YESSSSS!!!

Consultant advises me that … PSA reading is now 0.14.  That’s more like it, and miles better than my first test at 5.04 and the 13.5 before my treatment at Addenbooke’s.  It would appear that the Medical profession have worked wonders on me for the 2nd time in 2 years.  And, furthermore, I seem to have escaped nearly all the potential side-effects of the treatments … so who’s a lucky boy?   THANK YOU, EVERYONE!

There may be a small spike in PSA reading as the Decapeptyl androgen therapy injection wears off.  Next steps will be a further Blood Test in 6 months, along with a further consultation appointment.  So, unless anything changes dramatically, I’ll have nothing to say for quite a while.

Thanks for reading, and please spread the word.

Now go and get tested, chaps!  Early treatment = better outcomes!

SIDE EFFECTS

Tuesday 17 July 2018

Still having one persistent [and very common] side effect from the Decapeptyl, which I have just been reviewing on the Internet.  Hot flushes and sweating, particularly at night.  I could have blamed it on hot weather in Arizona, or even warm weather in Jersey, but it’s cooler now and still happening.  Not a show-stopper by any means, but somewhat irritating.   Especially inconvenient at night, when I’m constantly fiddling with the bedding to get to a comfortable temperature … and then 20 minutes later having to re-adjust everything again!  And being woken by sweat pouring down my face doesn’t help either!

Hot drinks and food also bring on the sweating for a few minutes … no big deal, just a rather strange manifestation.  I’m avoiding posh dinner parties for now.

My last Decapeptyl injection [3-month dose] was back in March, so that’s only just starting to wear off, and it seems it will be a few more months before it wears off completely.  I guess continuing to smoke and drink doesn’t help, but I’m not going down that route – things aren’t bad enough to justify such extreme measures!!

Here’s a couple of screen-shots from Macmillan and Cancer Research UK

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Friday 21 September 2018

Wow!it’s been a long time since I updated, probably because I’ve almost forgotten about Prostate Cancer!!  Like, I’m just about normal now!  The hot flushes and sweats are almost a thing of the past, although occasionally hot coffee or food can trigger a reaction.  But a hot week in the Mediterranean earlier this month was … just a hot week in the Mediterranean!  Next review appointment is in January, where I hope another PSA Test will be even more encouraging!

Side Note.  Delighted to hear this week that an old buddy with more complex cancer issues has had his “You have about 18 months left” sentence lifted, as direct treatment and chemotherapy on his liver cancer is being successful.  You, see, there’s almost always hope, no matter how bad things might seem! 

Have you been tested yet?  Just checking!  😉

Thursday 17 October 2018

Just seen this article in the Radio Times … https://www.radiotimes.com/news/tv/2018-10-15/bill-turnbull-prostate-cancer-announcement-reaction/ … another late diagnosis, with considerable spreading.  It says … “But the disease, which had been developing in his prostate, had spread to his legs, hips, pelvis and ribs. “Maybe if I’d got it earlier and stopped it at the prostate, I’d be in a much better state,” he says.  Were there symptoms? Well, he’d experienced aches and pains for a year or so and his “pee pattern” had changed, but he’d assumed it was just “old age.”

Best wishes, Bill.


Friday, 10 May 2019

I hadn’t realised I’ve been neglecting this blog for so long – my apologies!  So …

Poor Bill Turnbull having a torrid time with chemo,  but fighting on.  The curse of late diagnosis, of course.  GET TESTED, Chaps.

February 2019 … routine test and a small spike in PSA from 0.14 to 0.34, as predicted back in June 2018.  Slightly worrying, of course, but the Prostate Cancer ‘alert level’ is around 4.0 for my age, but down around 2.5 for younger chaps. I had gone from 5.3 to 13.4 (eeek) but happily caught in time to prevent a worse outcome.  Obviously a bit annoyed, but the next test was brought forward to 3 months so … broadly content!

April 2019 … another routine PSA test by my GP, followed by a review in May.  PSA back down to 0.29.  YESSS.

May 2019 … the awaited Review.  Still experiencing the effects of the androgen therapy.  There was a 2-page piece in The Times a couple of weeks ago on the broader subject of ‘diminishing male hormones’.  Interesting!  Yes, i have penis and testicle shrinkage, and my pubic hair is decidedly less impressive as well!  Yes, I still have ‘night sweats’ too … “A lack of testosterone means false signals are sent to the hypothalamus, the part of the brain that regulates temperature …”  Last night I awoke at around 02:00 drowning in sweat, running down my face in streams!  Yes, I have sleep problems too, although I’ve always been a bad sleeper.  But lower testosterone makes it worse, and the worse your sleep pattern the less testosterone you produce … a vicious cycle.

However, I was advised that the last androgen therapy injection was ‘only’ a year ago, and it can take at least that long to wear off.  So I shall be a bit ‘girlie’ for a while yet!  And anything to boost testosterone could regenerate the cancer, so NOT a good idea … i shall accept night sweats and a renewed interest in flower arranging in return for a longer life!  😀

Meanwhile, various holidays continue to be “bladder-stress free”, which is where this all started … so all is good. No more navigating foreign places looking for the nearest Public lavatory!  It will be about 47,000 miles this year – apologies for the carbon footprint, but I do have an electric car and about 1/2 acre of woodland to offset some of it!  😉

 

Good company in a journey makes the way seem shorter. — Izaak Walton

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