Prostate Cancer Narrative

 

Prostate Cancer

I am writing this with the latest input at the top, and I hope that putting the information out this way will help keep everyone informed.  If you want to contact me, you can always do it by  CLICKING HERE.  Alternatively (as they say on the One Show) do it in all the usual ways.   If you would like to donated to my Just Giving Page in aid of MacMillan Cancer,  the links are repeated here for convenience:


https://www.justgiving.com/fundraising/Stephen-WhiteanIHYCforMacMillan  


and/or just use your phone camera and point it at this:




NARRATIVE

Sunday 9 May 2021

Here I am at day 9 post Cycle 3.  The dip seemed to follow the normal pattern and by Friday (Day 10)  I thought  I was clear of it, but a busy Friday and Saturday brought me to my knees and the rule for the rest of Saturday was  BDFU (bum down, feet up) followed by a good night’s kip.  Feeling better this morning, if a little washed out still. Gentle day today methinks.


Tuesday 27 April 2021

Gloriously nothing to report since the last nadir subsided.

Hair almost non-existent but funnily enough little fluffy bits are trying to re-grow.   Just had Chemo Cycle 3 of 6.  This time they gave m a large steroid infusion ahead of the Docataxel (chemo) to reduce risk of a reaction and then infused the chemo over 2 hours instead of one.   No problems.   Getting addicted to Costa coffee’s on the hospital ground floor afterward  (a bit of a ritual now.)   Half way through.....

Here I am with the really lovely blanket that my lovely Sarah made for me.



Sunday 18 April 2021

Nadir now subsided.  Just the normal side effects continue.

Sore mouth (not too bad),  dry eyes and skin and itching.  Taking an over the counter  one-a-day antihistamine which is helping keep the itching under control.   A little more energy but most things are a bit of an uphill task.  I received a letter from the NHS reminding me that I am in the highest group of people at risk from infection  (organ replacement and active chemo patients.) So my lovely lady and I are being very careful.    That said, we had a very pleasant lunch at Breeze (the bar restaurant in our marina) in the sunshine.


Wednesday 14 April 2021

Very sore mouth and throat, no temperature but by about 2000 I gave up and went to bed. Slept well til about 0200 and have been tossing and turning ever since.  Now 0447,  had some cornflakes (my ‘go to‘ thing when hungry and thirsty - somehow they just help.)

Heading back to bed to see if I can sleep.


Tuesday 13 April 2021

Felt lousy this morning; dragged myself downstairs but enjoyed my cup of tea and normal breakfast. And before you ask, no, not because of my one pint of Doombar (which was wonderful.)   Went back to bed and slept til about 1430, then got up and sat at my work table.  Lovely food (which I struggle to taste.)  I just read that the effects of Docetaxel are cumulutive, meaning that each chemo cycle effects are going to be a bit worse.   Deep joy.  Must maintain PMA and SOH. 

Strepsils working as a good back up to the medicinal gargle

that the chemo nurses gave me.   Fortunate to have no nausea.   Some aches and pains and dry skin.  Inside of nose has no hair and looks/feels like the surface of Mars (dried blood, especially starboard nostril.)  Scalp itching again, so I suppose the last of the barnet will head south soon. 


Monday 12 April  2021  PUBS OPEN!  HOORAH!

Chemo nadir (low point) started over the weekend and I woke up this morning feeling like someone had ‘ironed’ my tongue.

Barbara advises me that the chemo attacks all cells that replicate quickly,  which includes all the mucous ones. This is why my nose feels like it belongs to someone else and my tongue has been through the Chinese laundry ‘button crushing and rust streaking’ machine (ex RN personnel please explain to the uninitiated.)   Still a  dose of strepsils actually helps and, while I cannot taste much, my appetite seems healthy.   Off to Breeze (our bar restaurant here in Island Harbour) for coffee and cake to celebrate it re-opening.

Last of 5 Filgrastim self-injections for this cycle today.  I am glad because the jab does make me feel a bit $h1tty.


Thursday 8 April 2021

We decided that my hair and goatie are now looking so wispy that the electric clippers came out and took it all off down to about Grade 1 and I had a shave.  A bit bald looking but not  ‘BIC’d’ yet.   We have done it in gentle steps so far but when it comes back I think I will go pink again.



Not a pretty sight


Wednesday 7 April 2021  Chemo Cycle 2

Tuesday 2330  2 Dexamethasone pills

Wednesday 0830 2 Dexamethasone pills

                    1030 2 Dexamethasone pills.


GREAT NEWS IS THAT MY PSA HAS DROPPED AGAIN

Started on Christmas Eve, reported 15 January at 331.7  (normal is 1 to 5)

February reading 4.0, 

March reading 2.7

April reading 1.3

All going in the right direction


1130 in for Chemo.

This session I had normal Docetaxel plus the Biphosphonates (Zoledronic Acid) to bone strengthening.

Half a minute into the Docetaxal drip I had a reaction.  All stop, flush,  into drip went hydrocotisone and antihystamines to counter the reaction and then after an hour of observations we re-started without hitch. They are really good at St Mary’s Hospital Isle of Wight.    So,  the chemo and biphosphonates went in fine, just took a while.  Fortunately the biphosphonates are done every other cycle.   Added to that I now have chewable calcium tablets as well as 5 Filgrastim self injections and Prednisolone pills twice a day through out.


As a chemo patient I am in Tier 1, along with organ transplant patients for COVID jab priority and protection.  A phone call to the surgery and they are going to book Barbara and I in for the 7th of May for our second Pfizer jabs.  That will place them exactly 12 week after the first one and in the middle of my chemo cycles 3 and 4.


Didn’t sleep a wink with all those steroids in me.  I read a whole Harlan Coban novel through till 0500 then lay back and stared at the ceiling inbetween potty stops.

Onwards and up wards.


Tuesday 6 April 2021 Day before Chemo Cycle 2

Rather than bore you with details (I’ll do that later) I thought I would share a poem I wrote the other day as a ‘counter’ to my lovely daughter in law Kerry’s poem about menopause:


LEGO HEAD ANSWERS BACK


So you think that the war now is over

And that the status is quo

Just have a nice dose of chemo and you’ll find

The answer is no.


The jabs and the tabs they throw at you

Will make a true mess of your head

And your armpits and pubes and the hairs on your chest

You might think they’ll all end up dead.


So what could we do to engage it?

I know,

Let’s colour what’s left of it pink

But then you find out t’is a war that is lost

When you find most of it in the sink


So a strong sense of fun is essential

Remember always just to laugh

The hair you once loved and now it is going

Is likely to clog up the bath.


For me it’s a strong sense of humour

To laugh at myself is a must

For after the chemo my hair will return

And baldness?  a thing of the past.


SPW 4 Apr 21



Monday 5 April 2021

Somewhat relieved to have got to sleep at last.  Not sure if the itching was dehydration (note to self: drink more water) or the chocolate or just dry skin.   Better today.  Good news is that Just Giving have put our donation page in the top 1%;  brilliant effort all around and a huge thank you again from us.  Tomorrow starts the pre-cursor to Cycle 2, with blood test, COVID swab and first dose of preparatory Dexamethasone tablets.  Deep joy.


Sunday 4 / Monday 5 April 2021   Itching

Sat here at 0045, can’t sleep,  itching all over.  It seems this can come from the Tocedaxel chemo treatment.  It came on gently over the weekend.  Sometimes my legs itch after eating something sugary, so a bit of chocolate might be a contributing factor, but it is quite irritating.   Took an anti-hystamine that seemed to work for an hour or so;  rubbed some ‘anti-itch’ cream in to my legs,  minor improvement but not enough to let me sleep.


Friday 2 April 2021  Barnet Departing

Well,  the old barnet continued to fall out and, funnily enough, it almost felt like I was wearing a hat rather than having hair. Also my scalp was itching as if to tell me that each follicle was packing it’s bags and leaving.  So yesterday morning Barbara got the scissors out and we transformed my thinning pink pate into a rather natty if almost non-existend  Mohawk, just for fun.

As the hair express leaves this station I will probably turn it into a ‘Kojak/Bruce Willis thing.  My pink goatie,  while still there, does not respond gracefully to the odd tug, with bits of whisker whiskering themselves away.  At least the nesting birds are benefiting from some pink/white bedding.



Tuesday 30 March 2021  The Hair Thing

We had to chuckle this morning.  I am sat here typing with a small flurry of pink hair departing my bonce.  Barbara says that is how it happens.  I have decided that if it looks really silly we will just shave it off and wait for it to re-grow.    I am not bothered at all about it....  actually looking forward to seeing what I look like with Bruce Willis's hairstyle....... with perhaps my grey/pink goatie, which refuses to fly the coop at the moment.......😀


Monday 29 March 2021 - Lockdown Release Day 1

Sat at breakfast,  we decided on the spot to book the noon ferry and go over for a socially distanced visit to see our daughters and youngest grand daughters.  Lovely sunny day, wonderful seeing them and having our one year old, Jenna actually recognise those people she had only seen on a phone or tv screen.   Wonderful day...emotional and wonderful.


Friday 26 March 2021  Day 10 after first Cycle

Feeling virtually like normal today.  Not much tiredness, a little mouth soreness but other than that fine, plus sleeping well.

Just Giving Page this morning now over £3500 and if you add the Gift Aid as well it adds another £662 from us tax-payers,  so up over £4100.   Thank you again to everyone who has donated.  Please do feel free to spread the link to this website and/or the link to my Just Giving page.

Hair hanging on in there too!

Onwards and upwards.


Thursday 25 March 2021  Youngest granddaughter Jenna is 1 year old today

Hopefully coming out of the nadir (low point)  post chemo.  Now Day 9 since first cycle and the low ebb is predicted Days 5 - 9.  Making me feel very tired and quite achey, but manageable with rest and plenty of fluids, developed a taste for cranberry juice.  Can’t get enough of it.

This morning our Just Giving Page is just shy of £3500!  That is so brilliant and we are really grateful to you all for donating. Please do feel free to share the link as far and as wide as you like.

STILL GOT HAIR TOO!


Tuesday 23 March 2021

Orthopaedic Surgeon Appointment today.   Went in early for x-rays of starboard femur and thoracic spine (particularly T6.)

The good news is that the bad metastase (or lesion) has not grown at all since the last x-ray.   It represents about 20% of the bone diameter of the neck of the femur and is ‘sclerotic’ (hard and bony)  rather than ‘lytic’ (soft and squishy.)   The ortho people give these things a score, where 8 or above, they would start to consider an operation, probably a hip replacement and a bar or something.  Thankfully my score there is 3 - hoorah!!   I am booked for a review on Tuesday 28 September at 1000.   As for the T6, the original MRI analysis suggested the ‘wedge fracture’ to be ‘pathological’  ie to do with the prostate cancer secondaries.  X-ray and discussion with the ortho suggests that it could actually be an old ‘war wound’ - I did hurt my back a number of times over the years.  T6 is about 20% down on one side and the advice given is to concentrate on standing up straight and being careful.   All brilliant news.    In all,  a good day.


Monday 22 March 2021

Not what I would have called an enjoyable chemo day.  According to reading,  the ‘nadir’ or low ebb, painwise, for Tocedaxel chemotherapy is around days 5 - 9 after cycle.   That fits!  I felt lousy all day,  resorting to some ibuprofen and gaviscon at bed time.   Took a while to get to sleep but after 10 chapters of a really good book on Kindle called  ‘If you can’t take a joke....‘   by old navy friend John Skull,  I was able to relax.  My dad always used to say that if you cannot get to sleep,  lie right on the edge of the bed......you’ll soon drop off.


Saturday 20 March 2021

I think I can safely announce that the effects of the chemo kicked in last night.  While I slept quite well,  I am literally aching all over - not an exaggeration at all.  Even my teeth ache!  I felt better getting up, so a quiet day, sat rather than in bed for me.   Still, if it is going to give me a better chance of longevity I will take the professional advice and continue with it,  but suffice it to say it ain't much fun.   Still,  3 rugby matches today,  observed from the comfort of our La-Z-Boy recliner sofa.  Best of luck to Wales for the 6 Nations win.   I just wonder if France will spoil it for them........  should be a great game.


Friday 19 March 2021

A small amount of pin-pointed pain woke me up at around 0530.  It felt like small stabbing pains in specific points around my body.  My ribs, shoulder blades,  clavicle, shins and then my right femur top.   I am no medic but my fertile imagination suggests I can feel the medication attacking the metastases in my bones.  I will keep monitoring this.   It is not very painful,  just odd aches in specific points.  Also my tongue feels a bit more sensitive,  like I drank something far too hot...


Thursday 18 March 2021

Second self jab, non-event.  There are 5 daily jabs after each chemo cycle so I won’t report every jab if it is such a non-event.

Quiet day of writing.

Wednesday 17 March 2021

First self-administered injection of Filgrastim (never done that to myself before - didn’t really feel the needle or the injection into my flabby midriff.)


Maxillo-Facial Surgeon Appointment.  (Ms Ana Roman)  Had a full jaw and teeth x-ray to ensure my jaw and teeth are healthy enough  to take the Bi-Phosphate drugs to be added to my chemo mix, starting in Cycle 2.  Link here:

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/bisphosphonates/bisphosphonates-cancer


Bisphosphonates are drugs that help prevent or slow down bone thinning (osteoporosis). They can help to treat some types of cancer that cause bone damage.


Tuesday 16 March 2021  Chemo Cycle 1

Took about 2 hours, sat in a comfy chair.

Came away feeling very slightly ‘vacant’ but that wore off quite quickly.   I wonder if I have just been lucky or whether the effects will get worse as the chemo progresses.

I am just very grateful for the speed of response and the wonderful care afforded me by everyone I have met here.

I have a bag of meds to take at various times, so I will have to get my head around that.


Chemo session (Cycle) 1 complete.  Now for a 3 week rest before Cycle 2.  I feel much better than I thought I might... now,  perhaps that will change.    I have eaten a large bowl of yummy chicken basque, polished off half a box of chocs and mug of tea.


The chemo cycle consisted of:

saline flush

enormous dose of steroids (in the drip) Dexomethasone - actually also used in fighting COVID 19 (but not in my case.)


Docetaxel (the chemo drug)

10 minute saline flush.

After that, daily I have the following:

Filgrastim self-injection, once a day for 5 days


Prednisolone (corticosteroid) 5mg twice a day for 21 days (whole cycle)


Metoclopramide 10mg tablets,  one tablet 3 times a day

anti sickness (if required.)


Dexamathasone 4mg taken 12 hrs, 3 hrs and 1hr before next Cycle.

I am writing this down here more because I have to get my head around what to do.  Some of you might find it interesting but if you don’t,  apologies.

Very slight sore throat and cough.  Plenty of fluids and be gentle with myself are the rules.  I‘ll take that.

Next Cycle on Wednesday 7th April at 1130.  It has been shifted from the Tuesday on this one occasion due to Easter

(to allow me to wean myself of the chocolate, I expect.....)

Next hormone jab Friday 16 April and I don’t need a blood test for that.   The last test showed the ALP marker up a bit (Alkaline Phosphate.)  That shows increased bone activity where my bones are repairing where the metastases are shrinking back due to the treatments - a positive thing.  PSA at 2.7, so I am happy with that.

AND (trumpet fanfare!)  WE HAVE SMASHED THE £3000 BARRIER ON JUST GIVING FOR MACMILLAN.

Another HUGE thankyou and social media hug to all of you for your generosity.


Monday 15 March 2021  pm

Chemo education session complete.  Lovely people, really nice comfy chemo suite   I had no idea how many people are going through this journey but the place was quite busy.  Lovely nursing sister took us through the drill and the Docataxel (my chemo drug) instructions.  Very patient, answering all my questions in a way this thick sailor can understand.   I cannot say I am actually looking forward to Cycle 1 tomorrow but I am certainly less anxious (if that is possible - with my lovely lady I have no surprises and she has prepared me so well for all this.)   Onwards and upwards.


Monday 15 March 2021 am

So from Saturday Morning to Sunday afternoon we have gone up from £2722 to £2912.  £190 in less than 2 days!!  Thank you again so very very very much.  This is all to an excellent cause.  Over this weekend both Dave and Tony went pink, and photos will follow as Kerry is going pink too.

Today is a bit of a land mark:  I am off into hospital for my chemotherapy education session.  So today will be easy;  tomorrow is my first chemo session,  Cycle 1, after which there is a 3 week rest period before Cycle 2,  and so on until the 6th Cycle,  By my calendar  Cycle 6 happens on 29 June, so I am guessing any normality returns 20 July.  A bit nervous.

Yesterday we had a lovely Mothers Day with correctly conducted, socially distanced visit from Dave and Kerry,  Tony (who lives here)  and Portal time with  Sarah and Stirling (the youngest kitty)  and Hannah&Tim and the girls.   We both feel the whole Facetime/Portal/Skype/Whatsapp video thing has helped to keep us ‘sane.’  Barbara was spoiled rotteon with wonderful wine, beautiful flowers and enough chocolate to give King Kong a heart attack.  But a really lovely day,  with Barbara doing something she really loves doing,  cooking up a storm for people who truly appreciate her.


Friday 12 March 2021

Next hormone jab today.  The GREAT news is that I asked about my blood test results from Monday:   My PSA has dropped again,  this time from 4.0 to 2.7.  I am soooo pleased; it means the cancer is responding well to the hormone treatment.   With a bit of luck the chemo will continue with the progress.

Another nice thing:  my two beautiful daughters, Sarah and Hannah and Hannah’s lovely husband Tim all have got on the Pink Bandwagon - in fact they did it before Barbara and I did,  going pink very soon after the announcement about my having Chemo.  I told all our kids that my hair might fall out and Hannah said, ‘why don’t you dye it pink then?’  So I agreed but only to do it to raise funds for MacMillan.  The rest is history, but I have just received a photo I want to share with you all.   So if anyone else fancies going pink...........


L to R;  Tim,  Sarah and Hannah



Wednesday 10 March 2021

It would have been Barbara’s dad’s 97th birthday today. Sadly he crossed the bar at the age of 67 from lung cancer.  We do miss him.


If you haven’t yet donated,  please please do so. Links and QR just above this.   If you have donated,  please do feel free to tell the whole world what we are up to and also to send them the link to my Just Giving Page.


We hope you are keeping warm and dry today.  Yesterday here it was warm and sunny; lovely.


Well,  here we are at £2672 and another HUUUUUUGE thank you and remote hug from Barbara and me.


Busy week coming up.  Blood test on Monday,  COVID swab and hormone jab on Friday,  Chemo education session Monday and Chemo Cycle 1 of 6 on Tuesday (3 weeks inbetween cycles or sessions.)  Maxillo facial on Wednesday;  they have to check my jaw and teeth are healthy before injecting yet more chemo like stuff into me.  Onwards and upwards and thank you again soooooooooooooo much.


Monday 8 March 2021

Pre Chemo blood test with the nurse at Wootton Surgery


Sunday 7 March 2021

Over the last 24 hours the donations continued apace. As of this morning we are up to £2470,  donated by 100 donators.

Thank you sooooooo much. 

Went to the bathroom first thing this morning and caught sight of myself in the mirror.  Bit of a shock!!!  PINK!!!!


Saturday 6 March 2021

Today was a fun day. We both woke up feeling a bit washed out,  so our daily walk in the sunshine and cold wind was a bit shorter than the 11000 steps we were planning.

So,  back in the warm, we decided to ‘do’ our hair.  After my first ‘pinking’ session we both learned from our daughters and also a very nice friend, who happens to be a very knowledgeable hair stylist, some good hints on how to make it soooo much better.    I managed to bleach parts of Barbara’s hair and she bleached mine all over.  We then attacked each other with the pink hair dye and actually both heads came out unscathed and looking rather good.





Friday 5 March 2021

A strange week;  it seemed like things were going to happen on the hospital front yet nothing heard.  Then, all of a sudden I start to receive calls and letters and the diary started to fill up:


Monday 8 March,  blood test pre chemo Cycle 1

Friday 12 March,  COVID swab pre chemo

Friday 12 March, next hormone jab

Monday 15 March,  chemo education session

Tuesday 16 March,  chemo Cycle 1 of 6 session (then a 3 week rest before Cycle 2 and so on.) So this will go on until  the last cycle on 29 June,  which happens to be just after our eldest grandson Harley’s 21st birthday (26 June.)

Wednesday 17 March,  Maxillofacial appointment so they can check my jaw and dentition. They have to be fit and healthy as part of the chemo treatment attacks them, and any weakness there will be a problem.

Then a few days off......

Tuesday 23 March,   Orthopaedic appointment and more x-rays to check the risk areas of my bones.

Thursday 25 March,  Oncologist telephone appointment.

From this it is clear that the system is attacking my cancer aggressively and I am happy for that to be so.


Thursday 4 March 2021

What a fantastic effort,  thank you all sooooo much.  As of last night we smashed 200% of target with a very generous donation,  and another one the same size came in 3 hours ago.

Thank you all so very much

Onwards and upwards

Steve


Tuesday 2 March 2021

Well,  by about 1400 we will have had the Just Giving Page running for a week and this morning we have reached £1740.

Another huge THANK YOU to everyone who has contributed.   We have enlisted the assistance of a local friend and professional hair stylist to come and re-pink my hair AND do a nice job on Barbara’s long dark locks too.  More pictures will follow.  Also MacMillan have supplied some nice green t-shirts so we can do some better photographs too.


Saturday 27 February 2021

As of ‘call the hands’ today the fund has reached £1253 and that is wholly due to all your generous contributions, so a huge thank you.


PINK HAIR DONE!!!!



We were hoping it might have been a tad brighter and that it would have gone on my ash grey (fag-ash grey) barnet.  We will have another go and we will bleach it first then go for something a bit more flourescent perhaps, but here is the first attempt.   

THANK YOU ALL SO VERY MUCH FOR YOUR GENEROSITY. (have I said this before?)

BUT

The whole reason for kicking off this whole campaign:  Facebook, Whatsapp, emails,  MacMillan etc etc

is to try and get all of my oppos to go and get checked.  So please do get checked if you haven’t already.


It is an interesting journey that Barbara,  my family & friends and  I have been thrust upon.

I had no idea just how many people read what I write and I am thrilled

to tell you that I have had responses from all over this planet, including donations from foreign parts as well.


I had absolutely no indication this was happening to me and it was only a visit to the doctor (after a number of phone appts)  where she examined me and sent me for a blood test.   That was Christmas Eve.   The CT scan, MRI and urologist appt to announce the result all happened between Christmas and the 15th of January (lightning speed in medical terms.)


Hormone jabs started that day, with the second jab on 12 Feb.  Blood test on 18 Feb, announced at oncologist  appt on 25 Feb showed PSA  had dropped from  330.7 at Christmas to 4  (high side of normal which is 0-5 I believe.)


So the hormone jabs are working and I will be on them for a long time.   The chemo is to attack the metastases in my bones.  It comprises  6 ‘cycles’  of an infusion that takes about an hour, then 3 weeks to get over it before the next one.


Anyway,  as soon as I am fit enough Barbara and I intend to be out and about again,  visiting our lovely family  and sailing our beautiful boat.

Our choir has not met since Feb 2020 and our archery has been similarly curtailed along with sailing,  Dammit,  so bring on all activities when it is safe to do so.


Thursday 25 February 2021

Oncologist appt done this morning. My PSA Score has dropped from 331.7 (the decimal point is correct)  to 4.0 in just 6 weeks and 2 injection sessions, which means the disease really doesn’t like the hormone jabs, which are to continue.  This will be supported by the chemo which starts in a couple of weeks, so we are hitting it very hard.

Notwithstanding the initial diagnosis, this is really good news.


Wednesday 24 February 2021

Just Giving campaign running for a little over 24 hours. I set an arbitrary target of £1000 and the generosity shown by all you lovely people has it at £640 at the last count, so please accept a MASSIVE THANKYOU from my lovely Barbara and me.


Monday 22 February 2021

FUND RAISING FOR MACMILLAN


Hi All,  by now you will have heard that I have prostate cancer.  I was told about it on the 15th of January but it had already decided not only to arrive but to invade my bones as well.

Anyway, the good news is that the MacMillan team at St Mary's are angels and their care and attention to date spurred me on to to do a little fund raising.   When I told our kids that the chemo will probably make me lose my hair,  our youngest, Hannah Mary Elizabeth Morgan  said 'why don't you dye it pink?'   So the idea grew from there.  I have set up a Just Giving page for it with the aim of making £1000 for MacMillan and I have it connected with the Island Harbour Yacht Club (IHYC.)   So,  on(or maybe before) the 27th of February I will have  pink hair and I will be posting photos.  


Please do donate.  The link and QR codes are here:


https://www.justgiving.com/fundraising/Stephen-WhiteanIHYCforMacMillan  


and/or just use your phone camera and point it at this:




Thursday 18 February 2021

Blood test at Wootton,  cared for by our lovely nurse Sue, in preparation for Oncologist appointment next Thursday 25 February.   From there I believe I will be given dates to start my

chemo treatment under the Stampede Trial.  Apart from aches and pains due to working on the kitchen,  I feel great.


While discussing my chemo programme with the family,  our youngest, Hannah, suggested that I dye my hair bright pink. So I have decided to do it and see if I can raise some money for MacMillan.  Watch this space (and others);  as soon as I have sorted out how to do it safely I will be prodding for donations.


Friday 12 February 2021

Urology appointment with the 3 lovely McMillan nurses for my second round of hormone injections.   They asked me again if I needed any pain relief and the answer was still no - I feel fitter and healthier now than I have since January 2020. 


I have been put on to the ‘Stampede Trial,‘   an activity where they put me on to chemotherapy early.  Useful link here:


http://www.stampedetrial.org/participants/about-stampede/

 

Classically they would have waited until the hormones weren’t working well enough and then resorted to chemo.  The Stampede Trial has been going on for quite a while where they put you on to the ‘cycles’ of chemo early, while still receiving the hormone treatment,  so they are hitting this very hard.   They tell me there have been very successful results to date, so it is worth going through it.  The treatment comprises 6 ‘cycles’ of 3 weeks,  where Day One is a few hours in hospital, on a drip, receiving the cytotoxic (cyto meaning cell) drugs, then a 3 week rest and off again for a total of 6 times.


A little warning,  and while it might look a bit odd:

I will probably lose all my hair in the process but I am assured it will grow back.  Also the chemo is going to make me quite tired and vulnerable to infection, so we will be being very careful - even more so than now.     (Barbara tells me I cannot get infected if I talk to people on Portal/skype/facetime etc,  so please feel free to arrange a call if you like.)


I am told that huge advances have been made in the treatment of this, and that they are learning all the time and adjusting treatments accordingly.


Tuesday 9 February 2021   Bone Mets Sclerotic not Lytic

Orthopedic appointment with Mr Jonathan Gardner at St Mary’s

Had an X-Ray before seeing him.   He announced some good news in that the bone metastases are ‘sclerotic’  (hard bone) rather than ‘lytic’  (fragile and easy to break.)  This means that the risk of bone fractures, especially in my starboard femur is much reduced.   His message was, however, quite clear.  No lifting heavy tool boxes or jumping on an off boats.  All my actions must be gentle to reduce any further risks,  but right now this makes me feel quite a bit happier about things.  The prostate cancer is still there and I will be continuing with the treatments provided and also the Rife machine every 2 days.


Friday 22 January 2021

Surgical biopsy of  Prostate

Results showed Gleason Score 4+4 = 8  Highly aggressive tumour  (10 is highest).


Friday 15 January 2021

I have just been told I have Stage 4 Prostate Cancer with bone metastases all over me.  In particular my starboard femur is compromised, so ocean sailing will be limited not only by COVID 19.


Friday 9 January

Two MRI Scans done,  one of pelvis area to inspect prostate, second one whole body to look for metastases.


Here is the message I have send out to family, friends and the wider social group,  with the one intention of spreading the message to GET CHECKED PLEASE - EVEN IF YOU HAVE NO SYMPTOMS AT ALL. The sooner you do the better will be the outcome.


Hi All,

I apologise if this is a slightly blunt way of promulgating this information, but I really did not want to talk to each of you on the phone/facetime etc to let you know individually; rather I would give you all the information together at the same time and then we can talk about it once you and I have had the chance to soak it up (if you want to, that is.)


I have cancer.   It is Stage 4 Prostate Cancer with bone metastases all over my body.  In particular my right femur appears weakened. 

The prognosis is that this is EMINENTLY MANAGEABLE.  People live a long time with all of this going on and a huge percentage of men have it as they grow older.   My version is a bit aggressive which is why the medical folk are reacting quickly and aggressively too.


That’s the bad news.  The good news is that I have already seen the specialists and they have already started me on hormone injections and have put a plan in place for more tests etc very quickly.    


People live a long time with this cancer so don’t expect me to check out just yet.   I will have to be careful with everything I do, especially overly physical things.  I will be seeing the orthopaedic specialists as well, to make sure my bones are looked after, and the other specialists for regular treatment.


It has been a bit of a shock and we will need to come to terms with what is going on, but I don’t feel any different today than I did at any other time in my life and we have many things we are going to crack on with.


Please rest assured that I will be doing absolutely everything I am told to do by the medical folks and I have the best person in the whole world to keep me on the straight and narrow with all of this.   It is my intention to deal with this in a positive manner and to live a full and active life for as long as I can. 


Sorry for the direct approach but I believe if I give you all the same information at the same time, it might make things a bit more manageable for you all and for us too.   I am happy to talk on facetime or portal etc at some stage, but do please just let any feelings out and we can talk about it when you/I are ready.   This is something that I am happy to talk through, I have no intention of hiding details or feelings about it and I am happy for you to talk to others too.

This is just the next adventure…

Loads of love

Steve/Dad/Grandad etc xxxxx   Friday 15 January 2021


27/28  December 2020 early hours of the morning,passed out,  fell off toilent and banged my head on the bath and the floor.  Was unconscious when I hit the bath.   Called 111 and went in for a CT scan of my head.  Bloods also taken in A&E.


23 December 2020  Blood and Urine Test

I was suffering with constipation.  I had a number of telephone appointments and telephone prescriptions,  cornering the market in laxatives and all to no avail.  Felt like I was ‘pooing around a corner of something and the stools, ‘when they came out’  we thin. Unusual; I have not suffered with constipation before.

The only thing that got things moving was, on advice from our son David,  half a dozen prunes blended with orange juice.  That worked!

I returned the unused laxatives to the chemist for disposal/reuse.


INTRODUCTION

This is the narrative of my journey into prostate cancer.  A bit of the precursor is entered for completeness, as I had no symptoms of anything at all,  and as of writing this in (18 March 2021) I still have no symptoms other than minimal side effects of the hormones and chemo treatments.  I am writing this upside down so that the up to date entries are always at the top, for easier reading.