Prostate Cancer: My Journey:

It all began in June 2024, with an issue with my left leg. I found that I was having problems putting weight on my left ankle, and there was an odd feeling on the outside edge of my big toe. I assumed it was just a toe nail that needed cutting. The odd feeling didn't disappear after cutting the toe nail and I thought that maybe I had cut the toe nail back too far. The issue with the left ankle continued throughout June, I gave up using the exercise bike (6th June) and I was finding that standing for even short periods, e.g. even when shaving was becoming an issue..

The problem came to a head on the Friday 28th June, when standing for even very short periods was a big issue. On the 1st July, I called the surgery and had a telephone consultation, where the problem was diagnosed as a trapped nerve. I was told to take painkillers and rest the ankle. The 4th of July, a Thursday, was polling day and I parked quite close (within a 100 yards or so) to the Polling Station. Even that relatively short walk caused pain, not in the ankle but in the calf muscle. I should mention that my toes had been feeling very cold - this would later prove to be significant. We come to the 8th of July, a Monday and time for the recycling bins to be put out. Even that short distance up and down the drive six times (and it's not that far) caused real pain in the calf muscle in the left leg. I duly made an appointment at the surgery and was seen the same day. The doctor examined the left foot and declared it a trapped nerve, and to rest up and take painkillers and the issue should resolve itself in three weeks. The left foot and toes were cold, and I really should have stressed this at the appointment. Walking even short distances caused pain in my left calf, and I stopped going out dog walking. 

It was the issue with my left leg that eventually prompted all the various scans and tests, which finally lead to a diagnosis of prostate cancer and the its treatment. Here, detailed below, is what happened from July 2024 onwards. This is when things really started to ramp up in terms of tests and scans. What follows is a combination of the diagnostic tests ordered by the vascular consultant, standard blood tests ordered by my surgery and tests ordered by the Urology Investigation Unit at Worthing Hospital. I have been to Southlands Hospital (Shoreham), Worthing Hospital and St. Richards Hospital (Chichester). In one week I had four appointments at three hospitals. It has certainly been a whirlwind. The entries below document all my appointments at the various hospitals involved or my local surgery.

20th July 2024 (Monday)
With no change in the left foot or calf muscle, I decided I should see an osteopath - the thinking being the osteopath could resolve the trapped nerve issue. However, the osteopath thought that the problem in the left foot wasn't a trapped nerve, but circulation related (this turned out to be the case) but worked on the calf muscle as it was knotted. Walking the forty yards or so from where the car was parked to the osteopath's clinic was an issue - pain in the left calf muscle.
23rd July  (Wednesday)
I called the surgery to tell them that the osteopath thinks the problem isn't a trapped nerve. I didn't get the opportunity to see, or talk to a doctor regarding the osteopaths' thoughts of it being circulation related. Instead, an x-ray appointment was arranged for the 26th July.
26^th July (Friday)
X-ray at Southlands Hospital.  X-Ray results later show no issue with the ankle bones.
29^th July (Monday)
Second visit to the osteopath, more work on calf muscle.
5^th August (Monday)
Third and final visit to osteopath, more work on calf and now the heel. I think the issue with the calf muscle was changing the way I was walking and was putting a strain on the heel.
6^th August (Tuesday)
This is a key date. With no improvement  in the left leg, I was really desperate.  I made an appointment at the surgery, and saw a different doctor who examined both left and right feet. Not a trapped nerve. The doctor arranged for blood and Doppler tests. Advised to stop resting leg and be more active. I took this to be going back on the exercise bike.
14^th August
The Doppler test was not entirely successful, but I was assured there was blood getting to the toes.
15^th August
Resumed using exercise bike, starting with a few minutes at first. In hindsight, this was probably not a good idea, with what was to come, walking would have been a better option.  
16^th August
Blood test. (Results would show a high level of bad cholesterol).
20^th August
Notified of referral letter being sent to Referral Support Team - this is as a result of the appointments on the 6th and 14th August.
21^st August
Call from surgery regarding high cholesterol level. I didn't want to start taking statins, and agreed with the surgery that I would try and reduce cholesterol level by change in diet. Blood test to be booked after 12 weeks. In hindsight, it would have been better to go on statins at this point. It might have prevented the issue in my left leg from getting worse.  
22^nd August
Notified (via NHS app) that the referral had been received and is pending.
25^th September
NHS app reports that the referral is no longer pending. No indication of what will happen next or when. 
22^nd October
Booked appointment at Goring Hall, a private hospital,  with a vascular surgeon for 27^th November.
New blood test shows cholesterol level down to 2.99 – still over upper limit of 2.4. At this point, I really should have started on statins, although, it was perhaps already too late to make any difference and probably not related to the cause of the problem.
23^rd October
Received appointment date at Worthing Hospital Outpatients for 23^rd November.
22^nd November (Friday)
Blood test at Willow Green surgery. I am not sure what this blood test was for.
23^rd November (Saturday)
This is when things start to really kick off. Appointment with vascular consultant Mr. Karim El Sakka, who examined my  left leg, including (using better kit) a Doppler test which showed restricted blood flow – 40%. Aspirin and statins prescribed, but no intervention required yet and possibly never. CT Angiogram to be arranged. Advised to be more active – do more walking, but no to exercise bike. Follow-up in four weeks (which sadly didn't happen).
24^th November (Sunday)
Day One of taking aspirin (75mg).
27^th November
Appointment with Mr. Mario Caruana at Goring Hall. He carried out a Doppler test (but with the same type of kit as used by the surgery) and refers to my NHS medical record. He agrees with Mr. El Sakka's diagnosis, although he thinks blood flow is nearer 30%.  He is, in fact, a colleague of Mr El Sakka at Sussex County Hospital.
29^th November (Friday)
Appointment at Worthing Hospital Cardiac Ward. This is for an ECG. All OK. This is good news, as almost everyone in my family tree has died from something heart related. I believe the reason for this was to find the cause of the blockage in the arterial tree in my left leg. 
9^th December (Monday)
Day One of taking Atorvastatin, 40mg.  
11^th December
CT Angiogram carried out at Southlands Hospital. The technician carrying out the CT scan also called Michael.
16^th December
Call from Vascular Nurse following MDT, an intervention is required, will be carried out at Royal Sussex County Hospital, Brighton and a likely date is late January, early February. This call was probably a mistake and intended for someone else as this was never mentioned again.
18^th December
Appointment for an ultrasound at Sussex Medical Chambers. I find out later that the ultrasound reveals I have a 17mm gallstone - this sounds quite large, but isn't causing me any pain or discomfort. I haven't heard anything since, if they are planning on removing it I haven't been told of such.
30^th December
Blood tests at Willow Green, one ‘spectrum’, other requested ‘PSA’.
31^st December
Appointment at Worthing Hospital for a flexible sigmoidoscopy (which included a Digital Rectal Examination.). Possible issue found during CT Angiogram. Update: no lower bowel issues, just ‘wear and tear’. it is likely that bowel cancer was suspected as being the cause of the blocked artery tree.
11^th January 2025
Appointment with Mr Karim El Sakka at Royal Sussex County Hospital, Brighton. CANCELLED. New date is 15^th February at 1:15pm.
14^th January
Call to Sussex Vascular Solutions. Voice message left, awaiting call-back. I thought that going private might be a good option, rather than waiting on the NHS, certainly after my January appointment being cancelled and rearranged for a month later.
20^th January
Doctor phoned regarding gall stone – 17mm in diameter. (Later found out that one big one is better than many little ones, the little ones cause problems). Blood test at Willow Green at 12:25.
21^st January
As I haven't received any response to my call to Sussex Vascular Solutions, I have emailed them. Sussex Vascular Solutions are not keen on taking on my case and my email has been forwarded to Mr El Sakka's secretary.
21^st January
Letter (via Patients Know Best) received regarding referral to Urology department (as an outpatient). Appointment to follow.
23^rd January
Call from Urology Investigations Unit regarding elevated PSA levels (later found to be 338 - I thought this must be a mistake). Appointment at the Urology Investigations Unit, Worthing Hospital, 2^nd floor, East Wing, is on the 29^th of January at 15:00pm.
25^th January
Letter from Worthing Hospital regarding camera test. No major bowel problems. Raised PSA level so referral being made to urologists (appointment already made). Now discharged from colorectal clinic.  
27^th January
Results expected today from PSA blood test, however, results already known to medical staff and I was advised of elevated level (but not the value) on the 23^rd of January.
28^th January
PSA blood test result, 338. This did come as a bit of a surprise, the typical level is between 0 and 4.5. I thought that this was either someone else's result, or the decimal point was in the wrong place. Turns out it wasn't.
29^th January
Appointment at Urology Investigations Unit. 3pm. MRI and bone scan to be booked. Two blood tests scheduled for Monday 3^rd February, 11:35am at Willow Green Surgery. Urology registrar was amazed at how well I looked, I think he was expecting someone with a PSA level of 338 to be a shambling wreck. He did examine my prostate (digital rectal examination), which showed I had a tumour. He prescribed Bicalutamide tablets ahead of any prostate cancer diagnosis. I took the prescription to my local pharmacy, who could not read the doctor's writing (what a cliché), although they were sure they knew what he meant.  They had to check with the hospital, which meant the tablets were not available until the next day.
30^th January
Bicalutamide tablets prescribed. These tablets have had an immediate effect on my PSA level, as found in the blood test on the 3rd February.
31^st January
Appointment at Southlands Hospital, 8:10am for an MRI. I am now on first name terms with the staff, Michael and Kevin. Lovely fellows.
3^rd February
Blood Tests 11:35am Willow Green. PHLEBOTOMY OP and FORM BHI. This included a PSA test  (which later showed a decrease in PSA level from 338 to 317. Note: I only started taking Bicalutamide tablets on the 30^th January).
10^th February
Appointment at Worthing Hospital, Radiology Department, 15:35pm. CT Thorax, abdomen and pelvis with contrast. I'm not sure what they are looking for here, as this is my second CT scan.
12^th February
Appointment at St. Richards, Chichester, Nuclear Medicine, Bone Scan 13:45 and 16:45. In the first appointment, I am injected with a radioactive fluid, I then have to wait three hours before the bone scan can be taken. We took ourselves to walk around Chichester. The scan itself takes about 45 minutes. I am the last one of the day. Disappointed to find that I have not developed super powers after being radioactive.
14^th February
Appointment at St. Richards, Chichester, Day Surgery Unit, Prostate Biopsy 11:30am.
Informed of large tumour in prostate (almost entire prostate).
15^th February
Appointment at Royal Sussex County Hospital Outpatients at 13:15pm.
This is for the problem in my left leg. No intervention required now; progress satisfactory. Not plaque but blood clot. Exercise will create alternative routes for blood supply to leg. Additional blood thinner to be prescribed, letter to be sent to surgery. There definitely has been an improvement in the condition of my left leg. At the very beginning, walking up and down my driveway was an issue. I am starting to walk further.
17^th February
Call to hospital regarding repeat prescription of Bicalutamide tablets. More tablets will be issued, but ongoing will be 12-weekly injections of hormone treatment. Call back expected on Wednesday/Thursday.
20^th February
Call from Worthing Urology Investigation Unit, appointment made for 21^st February, 10:00am. Results from bone scan and biopsy. Prescription and letter to pick up.
21^st February
Appointment at Worthing Urology Investigation Unit, 2^nd floor, East Wing, with an Urology Registrar.
The bone scan showed that the cancer has spread to the bones in the pelvis, especially on the left. The good news is that it hasn’t spread to any of the major organs. The cancer isn’t curable, but it can be managed by 12-weekly hormone injections in the stomach. (this has settled into a three monthly injection). This will stop the production of testosterone, which the prostate cancer feeds on, wherever it might be, from growing. This injection will be for life. The results from the biopsy are to follow. It was at this appointment I was told life expectancy was 5 years and ‘palliative care' was spoken of. This was a major blow and, of course very upsetting. In my favour, was my level of fitness. I do not have any symptoms. At this point, however, the biopsy results were not available, and they would tell a total different story.
24th/25th February
I've started telling the family, separately, using either face-to-face over WhatsApp, or WhatsApp voice messaging. this is because I wanted them all to see that I am feeling very positive about everything, and to reassure them. This was a very difficult thing to do, but very important not to get upset. I didn't see any need to tell them about the five years live expectancy. I scarcely believed it myself, however, it is important to remain positive.
25^th February
First injection of PROSTRAP-3. Next injection is on the 20^th of May. (this is the twelfth week). Appointment to be booked, but I cannot book it until the 20th April. I have created a WhatsApp group with Louise, Cheryl and Mike, so I can keep them informed of what's happening with my prostrate cancer treatment and just generally keep in touch. I am still taking Bicalutamide and will continue to do so until the supplied tablets run out.    
26^th February
Letters received from Worthing Hospital, copied to Willow Green Surgery, Oncology and Respiratory Teams at Worthing Hospital.
1^st March
I received a letter from the Respiratory Department at Worthing Hospital regarding the incident finding of a cystic lesion in the central part of my chest. After reviewing the scan, the Respiratory Team feel that the lesion has a clearly benign appearance, most in keeping with a thymic cyst. No further tests or interventions are required, but a repeat CT scan has been recommended with the Urology Team. This is to confirm the stability of the cyst. If completely unchanged, no further follow-up would be needed. The CT scan is most likely to be in early 2026.
4^th March
Appointment with Urology at Worthing Hospital, 10:00am.
This time I am seen by an Oncology Registrar, who told me that the biopsy results show that the prostate cancer is low grade in that the cancer cells are more like normal cells than cancer cells. As well as the cancer being in the bones of the pelvis, it is also present in the 7^th rib. Enzalutamide tablets are being prescribed as from the 20^th of March, with the first four-week course being  picked up from the Worthing Hospital pharmacy. Further prescriptions will be delivered directly. A course of targeted radiotherapy will happen later this year (it didn't). This is excellent news! Life expectancy has increased from 5 years to 10 plus! I have kept the fact that the cancer is advanced and is in the hip bones from my children, I don't see the need to worry them any further than is necessary.
5^th March
Appointment at Worthing Hospital, Upper GI and Liver Clinic at 12:50am. This is regarding my 17mm (0.669inch) gall stone. However, this turned out not to be a real appointment – a zombie appointment that was sent to me by mistake. I suppose I am on a waiting list, but if I am, no one has told me.
6^th March
Collected Rivaroxaban 2.5mg from Kamsons.
7^th March
Started taking Rivaroxaban 2.5mg, twice a day, early and late.
Letter received confirming appointment at Worthing Hospital on the 20^th of March.
15^th March
I have started taking two calcium and vitamin D tablets daily. This is to replace the calcium that can be lost from the bones due to the anti-cancer treatment. These are being purchased from Sainsburys.
20^th March
Appointment at the Worthing Hospital Amberley Unit at 2:00pm. This is the cancer unit, but with a pharmacist  to discuss next steps and pick up the first four-week course of Enzalutamide tablets. Further prescriptions will be delivered to home. Problem! Enzalutamide tablets and Rivaroxaban don’t mix, so the pharmacist will write to Willow Green surgery and request the prescription be changed to a blood thinner that is compatible. This will take at least a week. I will continue with Rivaroxaban – I have six days supply left after today. I will be having monthly blood tests and well as calls from the hospital. I should also monitor my blood pressure weekly. I've been told that my PSA level is down from 338 to 317 (the blood test was  on 3^rd February. I took the first Bicalutamide tablet on the 30^th of January) PSA blood test results are only available to me a month after the blood test, but available a lot sooner to hospital staff. .
23^rd March
Tablet Regime as of today; -
Morning (before breakfast)
Cod Liver Oil Tablet (this is optional)
Calcium and Vitamin D supplement (2) not prescription but advised due to likely calcium loss.
Rivaroxaban (2.5mg blood thinner), prescribed, first of two.
Morning (after breakfast)
Aspirin (75mg blood thinner), not prescription but advised by vascular consultant.
Evening (after meal)
Rivaroxaban – second of day.
Atorvastatin, 40mg (1 tablet).
24^th March
Blood Pressure
1) 145/95 60bpm
2) 137/89 63bpm
25^th March
Blood Pressure
1) 120/70 58bpm
2) 118/71 58bpm
26^th March (Wednesday)
Letter received (copy to surgery) regarding prostate cancer diagnosis. Gleason score is 3+3 (6), this indicates a very slow growing cancer where the cancer cells look more like normal prostate cells. This corresponds with what I was told at a recent appointment with the oncologist at Worthing Hospital. Unfortunately, Enzalutamide clashes not only with Rivaroxaban but also Atorvastatin. Alternatives are being prescribed; Edoxaban and Rosuvastatin. This will take probably a week to filter through the surgery system, delaying the start of taking Enzalutamide. Adcal D3 and Alendronate are also being prescribed. Adcal D3 is a calcium and vitamin D3 supplement. Alendronate is to reduce the risk of bone thinning.
27^th March (Thursday)
Blood test at Willow Green at 9:00a.m. This includes testing for PSA levels. It will be interesting to see how much further the PSA level has dropped since the last blood test (3^rd February, when it was 317). I will take the last Rivaroxaban tablet today. Letter received on the 26^th includes two orders for blood tests in April and May. Testosterone level is 1.03 (range 8.6 to 23.4nmol/L). This is my first blood test that includes testosterone levels. Prostrate cancer feeds on testosterone so a low level of testosterone is good. This level is below the normal range, if I didn't have prostrate cancer, I would probably be on a course of treatment to increase the level!
Blood Pressure
1) 151/89 59bpm
2) 145/90 60bpm
3) 138/83 58bpm
4) 136/83 58bpm
28^th March (Friday)
I was planning on starting on Enzalutamide tablets today, i.e. two days after blood test (a month’s supply was initially provided; further supplies will be delivered). However, Enzalutamide affects the effectiveness of Rivaroxaban and apparently Atorvastatin, so both will need to be changed to the alternatives specified above. Call to surgery regarding changes to existing medication – the team that would authorise the new medication are on a day’s training today, so nothing will happen until Monday 31^st March at the earliest. This is annoying as it will delay starting on Enzalutamide.
Blood Pressure
1) 133/79 57bpm
2) 135/77 58bpm
3) 132/80 61bpm
4) 125/82 61bpm
31^st March
Call to surgery regarding changes to existing medication, is now being raised with the Pharmacy Team. ADCAL-D3 and Alendronate have appeared in NHS app.
Today’s medication:
Cod Liver Oil tablets (optional)
Calcium + Vitamin D tablets (2)
Aspirin (75mg x1)
Atorvastatin (40mg)
Blood Pressure
1) 134/79 60bpm
2) 134/73 59bpm
3) 127/76 57bpm
4) 129/75 56bpm
1^st April
Received a call from the Pharmacy team regarding the recent letter (typed 20^th March). They are querying the Edoxaban strength (currently Rivaroxaban is a lightweight 2.5mg) and have emailed Worthing Hospital. The alternate Rosuvastatin will be taken initially as 10mg and if all is well then, the dose will be increased to 20mg. There will be a blood test in July to measure cholesterol levels after the change of medication.
Blood Pressure
1) 120/65 64bpm
2) 123/66 64bpm
3) 133/65 57bpm
4) 124/70 60bpm
2^nd April
Started taking Rosuvastatin 10mg, one tablet daily. Advised, one per day for a month, then if tolerating then increase to two tablets daily.
3^rd April
Call from Surgery pharmacist, Edoxaban 60mg has now been prescribed. Pharmacist advised to take two Rosuvastatin daily, as 20mg Rosuvastatin is equal to 40mg Atorvastatin. Single Rosuvastatin tablet taken. Initial four tablets Enzalutamide taken tonight. Enzalutamide (x4) Day 1
4^th April
In absence of Edoxaban, I have taken aspirin this morning. This will be the last time I take aspirin now that Edoxaban has been prescribed. Collected part prescription of Edoxaban 60mg. Remainder of prescription will be available on Monday. Rosuvastatin 2x10mg taken.
Today’s tablets.
Cod Liver Oil (1) and Calcium+D3 (2, nonprescription). Aspirin (after breakfast).
Rosuvastatin (2x10mg). Enzalutamide (x4) Day 2
5^th April
Cod Liver Oil (1), Calcium+D3 (2). Edoxaban - for first time..
Rosuvastatin (2x10mg). Enzalutamide (x4) Day 3
6^th April
Cod Liver Oil (1), Calcium+D3 (2). Edoxaban.
Rosuvastatin (2x10mg). Enzalutamide (x4) Day 4
Blood Pressure
1) 132/80 63bpm
2) 116/80 56 bpm
3) 127/80 57 bpm
4) 123/78 58 bpm
7^th April Monday
Collected outstanding Edoxaban tablets. Email to Daily Mail letters page.
8^th April
My letter published in the Daily Mail!
27^th April
Result of blood test on 27^th March, PSA level now 15, down from 317. A massive drop!
28^th April
Second four-week cycle of Enzalutamide tablets received. Appointment at Willow Green, 11:35am for blood test for Bone Profile, Full Blood Count, Liver Function Tests, PSA and Testosterone. To be repeated in May. Testosterone level down from 1.03 to 0.81.
29^th April
End of first four-week cycle of Enzalutamide.
1^st May
Call from oncology nurse, checking on how I was doing after four weeks on the Enzalutamide and as part of the conservation told me the result of the latest blood test (28th April) my  PSA test is now 1.3. (The ‘normal’ range is 0 – 4.5). This means that the cancer is well under control (could it be contracting?). Starting today on the second four week course of Enzalutamide. I am not experiencing any side-effects, apart from 'hot flushes', which happen randomly during the early morning (after breakfast) and at night (more often at night I think).
13^th May
Call to Willow Green surgery to book blood test prior to the end of the second four-week course of Enzalutamide tablets. Unfortunately, the surgery is closed on the Monday 28^th, due to it being a Bank Holiday and there are no available appointments on the 27^th. I have booked a 7:55 a.m. appointment for the 28^th of May. Not ideal.
20^th May
Appointment at Willow Green at 9:30am for second Prostrap-3 injection. Next injection will be on the 20^th of August (needs to be booked). Got to the surgery early, was seen early and on my way home before the appointed appointment time.
22^nd May
Third four-week course of Enzalutamide tablets (Xtandi) to be delivered today. Today is the start of the final week of the second four-weekly batch.
28^th May
Appointment at 7:55am at Willow Green for blood test. Ideally, the blood test should have been on the 26^th, but as this was a Bank Holiday, the surgery was closed, and no appointments were available on the 27^th of May. The result showed testosterone slightly up from 0.81 to 1.15. That is higher than the 1.03 level recorded on the 27^th of March. This level is still ‘out of range’ but why should there be an increase? No more hospital requested blood tests currently planned.
End of second four-week cycle of Enzalutamide.
29^th May Thursday
Start of third four-week cycle of Enzalutamide (Xtandi). Weeks 9-12
2^nd June Monday
Feeling unwell in late Sunday night/early hours of Monday morning, room feels like it is moving (as if I have been heavily drinking).  When sitting up, I must remain seated for a short while until I can get up and wobble to the bathroom. I have no appetite and have had very little to eat or drink, dry toast and a chicken sandwich, a few cups of tea. No other symptoms, no feeling of sickness or diarrhoea. Severity of symptoms wearing off during the day. Have spent most of the day in bed. Did panic thinking I may have taken the ‘wrong’ tablets in the wrong dosage as they look much the same (Enzalutamide and Edoxaban), found not to be the case. However, must take more care when decanting tablets from their pack to the pillbox.   
3^rd June Tuesday
Feeling better today, had breakfast cereal and one cup of tea. I find I have lost weight; I am now 13st 10lbs – this is down from 14st 1lb. I am out of bed and have had a further two cups of tea. Appetite returning, have had a sandwich and cup of tea at lunchtime, now feeling full.  I think it must have been something going around and not related to the prostrate cancer medication. Call received, but missed, probably from oncology nurse, called back and left voicemail.
Today’s tablets.
Morning: Cod Liver Oil (1) and Calcium+D3 (2). Edoxaban (before breakfast).
Evening: Rosuvastatin (2x10mg). Enzalutamide (x4)  
4^th June Wednesday
Everything back to normal.
End of Week 9 (third four-week cycle of Enzalutamide. Weeks 9-12).
5^th June
Start of Week 10 (third four-week cycle of Enzalutamide).
12^th June
Phone call from Dawn, my oncology nurse, checking on my well-being and giving me the results of the recent PSA test. PSA level is now down to 0.45. I had been concerned about the results of the testosterone level from the same blood test as it was slightly up, but Dawn explained that the testosterone level could fluctuate but is still where it should be. I told Dawn of my hot flushes and how I found them reassuring, as it shows the treatment is working. My next blood test will be at the end of July, and then every eight weeks. I spoke about the hot flushes; in a way I like having them in a way as it shows that the treatment is working. All good news. Start of Week 11 (third four-week cycle of Enzalutamide).
18^th June
I have received a letter from Worthing Hospital requesting a blood test. This will be at the end of July, at least two and no more than seven days before the end of the next four-weeks course on Enzalutamide (aka Xtandi).
19^th June
I have started on Week 12 (third four-week cycle) and have realised that I have not been called by Alcura, the people that deliver the Enzalutamide tablets. This has made me panic a bit in the early hours of Friday morning, so will call Alcura on Friday during their office hours.
20^th June
Called Alcura this morning, turns out there is no active prescription, which explains why they haven’t called me to arrange a delivery. They suggest I should call them on Monday morning. I have also called the Oncology Specialist Nurse Team at Worthing Hospital and left a message. I don’t know if this is the end of the Enzalutamide treatment, or probably end of a rolling three-month prescription, after which a new prescription is issued, all depending on how the patient is responding to treatment. As I am responding remarkably well, I am assuming that a new prescription will be issued. I don’t expect to hear back from the hospital until Monday. I am slightly worried, as the remaining tablets will last only until Wednesday. If I can get a delivery by Thursday, all will be fine, with no break in treatment. I think missing a day is OK.
Received a call (12:30pm) from Caroline, one of the Oncology Specialist Nurses, she had picked up my message and called to assure me that I would be receiving my tablets next week. The prescription will be issued by the Pharmacy Team on Monday and Caroline has emailed them to expedite my prescription. Panic over!   
June 23rd Monday
When I put in the request for more Rosuvastatin, I will ask for two months’ worth to try and align the repeat prescription requests for Edoxaban and Rosuvastatin coincide.  Now, I am being prescribed 56 Edoxaban (one a day), lasting eight weeks and 56 Rosuvastatin. The original prescription for Rosuvastatin was to take one a day for a month (28 days) and if handling well, start to take two a day (14 days). I am not having any problems taking two a day, so the 56 tablets only last 28 days (four weeks). I’d like either 112x10mg or 56x20mg (if possible).
June 24th Tuesday
 Called Alcura Patient Services (10:10), they had only just received the prescription from Worthing Hospital, and apparently needs to be checked over by Alcura pharmacy team. Received a call back from Alcura (13:05), they will be delivering my next  (fourth) four-weeks course of Enzalutamide tablets tomorrow (Wednesday). This will be Weeks 13-16. Update on the left leg issue. I think the leg is improving, albeit very slowly. The pain in the calf starts at about 0.25 of a mile and peaks at about 0.30 of a mile. Depending on the day, I either push on until one mile or one and a quarter miles. Sometimes, it feels like the pain in the calf has disappeared and it is only the ankle and toes that hurt. Toes are cold, mostly numb and difficult to move. During the day, I don't really notice the toes, or I can certainly ignore them. Night time is a different matter. Lying down isn't good and trying to get comfortable can be difficult. The best thing really is to have a busy day so when I go to bed I drop to sleep almost immediately.
June 25th Wednesday
Twelve weeks worth of Enzalutamide tablets have been delivered.
June 26th
Beginning of Week 13 Enzalutamide
June 30th
Call Willow Green surgery, following up on recent prescription request for Rosuvastatin. The surgery wants to check on the effectiveness of the change from Atorvastatin to Rosuvastatin and a blood test have been made for the 9th July as 7:40am. There is a support group for those with prostate cancer starting up in the village, meeting on the first Tuesday of the month. I am undecided whether to go or not, on one hand I'll get to meet others, and perhaps having contact with others will be a good thing. However, I do feel that the support I get from my family and friends is all the support I need and I am worried I am going to meet with some with prostate cancer that are 'woe is me'. Or, maybe I should go and spread some positivity. I am looking forward to seeing the Oncologist next week, apart from the hot flushes I don't seem to have any side effects of the medication. Well, apart from sometimes feeling tired in the afternoons, but not the extreme tiredness that is listed as an after effect.  The Oncologist did say that some tiredness would be the case, but maybe even that might be down to my age and if I have a bad night.
July 2nd
I am at the range today and actually did some jogging - about 20 yards at a time, with breaks in between and repeated it several times! Last time I tried that I couldn't do a single step, so this is a good advancement.
July 3rd
This is the beginning of Week 14 of the next four-week course of Enzalutamide. Received call from Worthing Hospital, next week's appointment is now going to be a telephone conversation (the oncologist has broken their wrist and cannot drive).
8^th July
Appointment at Worthing Hospital, Urology Investigations Unit, East Wing, 2^nd Floor at 10:00am. This has been changed into a telephone consultation.
Spoke to oncologist this morning, appointments were running late and I was concerned that my appointment (being a telephone call) had been missed. We discussed my recent blood test results, PSA and testosterone, being 0.45 and 1.15 respectively as at 28th May. It was originally thought that I would need another CT scan in August, however, as everything is going well, the repeat CT scan won't be until next year now, most likely February 2026. I will be booking another blood test for this month (2 months since last one) and once it is clear that PSA and testosterone levels have stabilised, the blood tests will become every 3 months and then possibly every 6 months. The overall position is that the cancer is being managed and will just need to be monitored. If I notice any change in my condition, I should contact the oncology nurses. The only side effects I am feeling is the hot flushes, which can be quite intense. I think there is something that could be done about them, but I feel that they show that everything is working as it should be. All is very positive and really it is only the limpy left leg that is causing me any issue.
9th July
Blood test at Willow Green at 7:40am to check on cholesterol levels following change from Atorvastatin (40mg) to Rosuvastatin (20mg). My last blood test for cholesterol was back in April, when all was good.
10th July
This is the beginning of Week 15 of the next four-week course of Enzalutamide.
17th July
This is the beginning of Week 16 of the next four-week course of Enzalutamide. The four-week course will end on the 23rd July. Next batch of four-weeks begins on the 24th July (Week 17). 
 21st July
Blood test at Willow Green. This is the first blood test for testosterone and PSA since the 28th May. Testosterone level  is now down to 0.62. Still waiting on PSA level.
29th July
Morning tablets are now:- Cod Liver Oil (optional), Calcium & D3 tablets x2, (ADCAL-D3 has been prescribed but I am still taking Sainsbury's tablets until they run out) Edoxaban, 60mg x1
Evening tablets are now:- Enzalutamide (Xtandi) x4 and Rosuvastatin, currently 10mg x2, soon to be 20mg x1. The prescription has been changed and now 8 weeks worth of tablets will be issued (56). The same number as Edoxaban.
Left Leg - I am walking further, and do a longer walk to the beach, so the distance covered is around 2.25 miles, sometimes longer, as I have taken to walking along the beach (on days when the tide is out), recording a short video to upload to the Family WhatsApp group. They are times when I feel that the calf muscle isn't hurting and it is just the ankle and toes, I can't really be sure. The toes are a problem, either they are too cold or too hot. As there is no blood to regulate temperature (this is what I think), they absorb heat or cold from the road surface, pavement, even from the floors as home (wood and tiles, so only ever cold). Toes are not a problem when walking, except I think in the recent hot weather, I have felt a burning sensation in the toes and a desire to remove the shoe (and sock if I could) and massage the toes. At night, there is a similar issue, I often lay with my left foot pressed up against my right calf, which might help the left foot but doesn't help the left knee. I think generally there has been an improvement, I do seem to be able to walk further before the calf starts to feel painful, I estimate it happens at around 0.30 of a mile. This does seem to vary though, and sometimes is less. Walking speed does make a difference. Strolling around at 2 miles per hour doesn't seem to be a problem. Walking a bit faster is.  Recently, I have started to do a bit of light jogging on a Wednesday, not far, just from one end of the 20-yard range to the other and back, so say 40-yards. This is something I would not have contemplated before. I could live with the calf issue, as if I stop for a few minutes, the pain goes away.  If only the ankle and toes felt normal all would be well.
5th August
A prostate cancer support group has started in the village, called "Below The Belt", it meets in The Great Dane coffee shop on the first Tuesday of the month. I attend my first meeting, not that I need support, as I already have a large support group of family and friends, more out of interest.
15th August
The PSA result from the blood test back on the 18th of July is in - new level is 0.06.
19^th August
Appointment at Royal Sussex County Hospital Outpatients (Brighton) at 11:45am. This is the follow-up to the appointment in February. We walk the 1.7 miles from the seafront car park to the Outpatients Department, with only one brief stop at the top of the stairs leading up from the seafront. The doctor was surprised at the distance we covered - not something he would have done! However, he did give us different information that from before, not a clot but sticky blood.
20^th August
Appointment at 1pm for the third injection of Prostrap-3. Rather than being every twelve weeks, the regime has settled into every three months, so the next injection will be on the 20th November. I do have an issue with the booking of this injection, I cannot book an appointment until appointments are 'released', so I wasn't able to make the appointment for the 20th August until the 21st of July (a Monday). and I was lucky to get an appointment on the 20th August. Next time I will call the surgery as soon as they open (8 a.m.). Ideally, I would be able to book a year's worth of injections all at once.
11th September
I have booked a hospital requested blood test for the 26th September. This is part of the ongoing prostate cancer surveillance. I would have liked the appointment to be on the 21st September, as this would be two months since the last blood test. Unfortunately, everyone seems to be on holiday on that date.
26th September
Blood test for PSA and testosterone. Testosterone level down from 0.62 to 0.53. PSA result expected on the 24th October.
24th October.
PSA result (from blood test of the 26th of September)  is in, 0.01 down from 0.06.
20th November
Appointment booked at Willow Green surgery for the fourth injection of Prostrap-3. This appointment was booked as for early as possible back on the 20th of October.
December 2025
I do think the issue with my left leg has improved, although it does vary at times. It does seem better at night, and although the left foot is still cold, it doesn't seem to cause me as much difficulty as before.
9th December 2025
Three months worth of Xtandi tablets delivered today. This is working well, the hospital issued another prescription automatically and the tablets were delivered promptly. Since taking Enzalutamide I have never had a break in the tablet regime.
20th December
Visited Mike today and told him of the bone scan results, I had inadvertently let slip that I had had a bone scan on our last visit to Mike and Kate's apartment and he questioned me on it today. I told him the significance of the result. He was of course, upset and that made me upset as well. My lack of testosterone does make me very emotional at times and we did have a bit of a weep together. I will tell Louise and Cheryl, but probably not until I get the results of the next CT scan.
29th December 2025
Hospital requested blood test and surgery requested blood test today (general health and wellbeing). Testosterone level is reported as being 0.46, this is down from 0.53 from the blood test on the 26th September. The PSA result came on the 26th of January 2026 at 0.01, no change from before. 
January 23rd 2026
I do have a letter for a blood test from the hospital, but I decided against it as the December blood test was only a month away from the appointment with the oncologist.
January 26th
PSA result from the blood test on the 29th of December 2025 is now available - 0.01. No change from the previous blood test on the 26th September 2025.
January 27th
Call from Sarah at Mile91 to discuss telling my story for Prostrate Cancer UK. Zoom call to follow on Thursday 29th at 12:00pm.
January 29th
12:00pm. Zoom call with Sarah at Mile91. This was an hour long question and answer session, which was being recorded. The resultant video session will be transcribed and I will be asked to approve or suggest edits before the final cut goes live on social media and/or the Prostrate Cancer website.
January 30th
Appointment with the Oncologist at the Urology Investigations Unit, Worthing Hospital at 11:30am. This was a quick review of my most recent blood test results - which are looking very, very good. My testosterone level is down to 0.46 (from a previous 0.53) and my PSA score is again at 0.01. I suppose it could get a bit lower! The oncologist will be organising follow-up CT and bone scans. I did ask about a recent new prostate cancer drug called Talazoparib, which has just been approved by NICE. However, reading more about this new drug, it doesn't seem to fit my current condition, as Enzalutamide is continuing to be effective and the new drug seems to be aimed as those whose cancer is no longer responding to Enzalutamide.
February 19th
Appointment at Willow Green Surgery at 9:30 a.m. for a PROSTRAP-3 injection. The next injection will be on May 19th, then August 19th and then November 19th.
Appointment at St. Richards Hospital, Chichester at 12:45pm and 15:45pm. This is a bone scan looking for prostate cancer cells in the bones. This is my second scan and just over a year since my first bone scan at St. Richards Hospital on the 12th of February 2025. The results will be available in, I think, ten days, although I won't get to see them until my next meeting with the oncologist on the 1st May.
February 20th
Two NHS letters received today, one is from the Oncology Department at Worthing Hospital and copied to my surgery, Willow Green. This is basically a report on my current condition and plans for ongoing treatment. This could include high-dose palliative radiotherapy to the prostate for local control. I am not sure exactly what this means in my case, as an Internet search says it is to relieve pain. I don't have any pain. The other letter is for the CT Thorax, abdomen, pelvis with contrast scan appointment at Worthing Hospital, Radiology Department. This was expected. The appointment is on the 4th March. This is just over the year since my first CT Thorax etc. scan.
February 24th
Appointment with the Vascular Consultant at Royal Sussex County Hospital, 10:30am. I have been signed off, so no need for any future appointment. I do need to be careful, no walking around in bare feet and to take care when cutting toenails, as the lack of blood getting to the toes isn't sufficient to heal any injury. When the issue in the left leg/foot first occurred I did have a sore toe caused by big socks in a tight fitting shoe and that injury did take months to heal. We parked in Regency Square as on a previous appointment and walked the 1.62 miles to the Outpatients Department. It took just under 35 minutes which is good going for us. The 70-odd steps up from the seafront were a bit hard but were navigated successfully, but walking uphill to the Outpatients Department was a bit of a killer! We then covered another 2 miles walking around Brighton, without any difficulty. Walking will cause the blood to find alternative routes around the blocked artery - and it is a blood clot, and apparently the artery will always remain blocked. The toes don't feel quite as bad, standing is better than sitting, walking is better than standing and lying down is the worst of all.  
March 4th
Appointment at the Radiology Department at Worthing Hospital for CT Thorax abdomen pelvis with contrast scan.
March 7th to 8th
I've booked rooms at the Stratford Park Hotel to get the family together. This is to celebrate my one year since diagnosis. It was great to see all the family and a great weekend away. I did think about telling Louise and Cheryl about the bone scan in 2025 and the outcome, but decided against it as it was such a happy weekend - I haven't laughed so much in a long time.
March 9th
Letter received today from the Department of Vascular Surgery at Royal Sussex County Hospital. It's official, no sign of critical leg ischaemia, no tissue loss and (as I told the consultant) no rest pain. I did ask Mr ElSakka to check both my left and right legs, I have a full complement of pulses in the right leg, but only the femoral pulse in the left leg. He states in the letter, that the (left) foot is warm with reasonable capillary circulation. As I reported that I can walk for almost 2 miles without stopping (I have often exceeded this) he has discharged me back to the surgery. This is good news, walking will help the condition and going further and faster will be the only treatment required.
March 23rd
I received a call from the Oncology nurse at Worthing Hospital regarding the recent (February 19th) bone scan at St Richards Hospital. The scan shows that the cancer in my left hip is smaller. This is good news as it shows that the three monthly injections and the daily chemo tablets are working. I have told the family the good news, and apologised for not telling them the bad news from the first bone scan. The results from the CT Scan aren't available yet, there is some delay in the system. I fully expect the results of the CT Scan to be equally as positive as the bone scan.
March 30th
My son, Mike has entered into the March for Men charity walk organised by Prostate Cancer UK on the 13th June in Battersea Park He works with men who are typically at risk and he is working to raise awareness within his company's workforce. Mike, and his girlfriend Kate are raising money for Prostate Cancer UK as are my daughters, Louise and Cheryl and my granddaughter Freya. Cheryl was the first to sign up for the march back in February 2026 and it took off from there.  I've signed up to the cause myself - 5Km will do me nicely I think. We are all members of 'Team Dad'. I can't thank them enough for all their love and support. It will be fantastic to see the family all together.
14th April
I had a blood test at my surgery - Willow Green. The majority of results are reported later in the same day and the testosterone result is usually a day later with the PSA result following a month later for me anyway, the oncologist will have the result a lot sooner). However, the latest blood test update reports that 'No Chemistry Test Requested' and 'No Haematology Test Requested'. This is most unusual. I used a very old (but unused) blood test request, I don't know if that is the issue. I have called Oncology (16th April) and left a voice message. They may need to send me a new test request and I may need to book another blood test! I am noticing an issue with my right shoulder in that I cannot put my right arm up behind my back, everything else is OK.
17th April
Just as a general health update, my left leg is improving in that our usual morning walk does not cause a pain in my calf muscle. The toes are still an issue, but perhaps not as cold as before and sometimes feeling a bit warm - the brighter weather must be helping. I am feeling some pain in my right shoulder, if I shoulder try and put my arm up behind my back it hurts, otherwise all other movement is OK, no stiffness felt. I still itch after a shower, and this may well be the hardness of the Sussex water as I did not have any issue during our recent stay in the Jack Russell Inn, Hampshire. I think this is true of some parts of the country, where the water is actually softer.
20th April (Monday)
Called the surgery to book an appointment - called at 8:00, (four times) message surgery closed, called at 8:01 (four times) message surgery closed, called at 8:02 (four times) same message, at 8:03 (twice), 8:04 (twice), at 8:05, called picked up on fourth attempt, number four in the queue, call terminated after 1 minute 22 seconds. Called again at 8:07, call answered, but now fourteenth in the queue and call terminated after 1 minute and fifty-two seconds. Called again at 8:09, now number twenty-two in the queue so opted for call-back. Call-back received at 8:29. Unable to book an appointment for the 19th of May, so chose the 18th of May instead. Would prefer the 19th so may call back later in the week to see if I can rearrange the appointment for the 19th and cancel the 18th of May appointment. Received telephone call from Oncology nurse - a new blood test order will be sent out. The blood test from the 14th of April is no longer viable for testing. I did three eight minute sessions on the treadmill tonight, ranging for 3.5 to 4.5kph, all on a 9 degree incline. Definitely hard work.
21st April (Tuesday)
Received a new blood test order and booked in at the Willow Green Surgery for 11:55 a.m. on the 23rd. The order I previously submitted had already been used - although the surgery usually keep the order, I should have realised really as this one dated back to March 2025! The new blood test will be in time for the results to be available to the Oncologist. I will get the bulk of the results on the same day, with testosterone a day later and PSA a month later. This mornings walk was a long one - 3.76 miles. I did get pain in my calf muscle at 0.55 miles and reached peak hurt at 0.77 miles, but after that the only discomfort was in my toes.   
23rd April
Blood test at Willow Green. Results show testosterone to be at 0.47, that's slightly up from the last blood test four months ago (December 29th 2025) but still acceptable. The PSA result won't be in until much later, but I would expect it to be either the same or lower.
May 1st Friday
Appointment with the Urology Investigation Unit (Worthing Hospital) at 11:50 a.m. It was a bit of a rush to get there as, although we left in good time, detouring around the village to avoid the level crossings cost us at least ten minutes. And, a very slow driver down the seafront was frustrating! Luckily, parking was easy enough and we managed to appear at the Urology Investigation Unit reception desk with two minutes to spare. However, appointments at the UIU always run late and this one was no exception - 30 minutes late to be precise. I expected the news to be good as I already knew the results of the bone scan and the results of the CT scan showed the same, the tumour had indeed gotten smaller. My testosterone result from the blood test on the 23rd April, was available to me on the 24th and was marginally higher than the blood test on the 29th December 2025, at 0.47, compared to the earlier 0.46. But, still, very, very low. The PSA result, which won't appear in the NHS app until the 21st May was told to me, it is now 'undetectable'. This is fantastic news. The doctor spoke of having localised radiotherapy, this is optional and I would need to know more about it and possible side effects before making a decision. It would be six sessions at Royal Country Sussex Hospital in Brighton. I continue to feel well and always thought that the 'numbers' the 'N', the 'T' and the 'M' don't reflect how I am feeing in myself. I should expect routine blood tests every three months.

They operate a website: prostratecancer.org and have specialist nurses that you can speak to. All calls are in confidence. The information below is taken from their booklet, which is given to those with prostate cancer. My comments are in italic.

What is Prostate Cancer?

Normally, the growth of all cells is carefully controlled in the body. As cells grow old and die, new cells take their place. Cancer can develop when cells start to grow in an uncontrolled way. If this happens in your prostate, you have prostate cancer.

Prostate cancer is the most common cancer in men in the UK. About 1 in 8 men in the UK will be diagnosed with prostate cancer at some point in their lives.

Most prostate cancer grows slowly or doesn't grow at all. It may never cause any problems or shorten a man's life. (You do read that most men will die with the condition rather than of the condition).

But in some prostate cancer does grow quickly and is more likely to spread to other parts of the body and can cause problems. This needs treatment to help prevent the cancer from spreading.

In my case  the slow growing prostate cancer has spread to other parts of the body. However, not to any of the major organs. It has been found in my hips. especially the left hip, the seventh rib and in the lymph nodes in the pelvis. I do not have any pain or discomfort in my hips. It has caused the problem in my left leg though, the only symptom, which was probably lucky for me, as it prompted the CT and MRI scans etc.

Most men with early prostate cancer don't have any symptoms. One reason for this is the way the cancer grows. You'll usually only get early symptoms if the cancer grows neat the tube that you urinate through (the urethra) and changes the way you urinate.

I think that some symptoms may be put down to old age, getting up in the night to urinate for example. Others may just go unnoticed, because I have not seen a complete list of what the signs might be.

Prostate cancer diagnosis requires more than just a PSA blood test. A digital rectal examination is needed, along with a MRI (magnetic resonance imaging) scan, a prostate biopsy, a CT (computerised tomography) scan, a Bone scan and possibly a PET (positron emission tomography) scan. This is commonly used if your doctor suspects the cancer has come back after treatment.

**** End of Extract from the Prostate Cancer Booklet ****

I have had both MRI and CT scans, and there is nothing to be worried about. The scanners are not tunnels, more like large POLO mints and you will find your head pokes out the other end. The CT scan features red lights that whizz round and around, the MRI bangs and crashes about, so much so you wear headphones and listen to music. A warm liquid will be pumped into your arm during the process. I found my ears got warm! You're in the scanner for about 20 minutes. The whole process from when you take off your trousers (or sometimes only down to your knees) to when you put them back on again is only 40 minutes. And that includes waiting to have the cannula inserted into your arm, then removed after the scan and a 10 minute wait to make sure you are feeling OK. I've never had any after effects. 

The Bone Scan is a longer process, and is in two parts. In the first appointment of the day, you will be injected with a radioactive fluid. This needs three hours to circulate and get into the bones. The actual bone scan takes about 45 minutes and again, is not like being in a tunnel.

Once you have had all these tests and have been diagnosed as having prostate cancer, you will be scored.

My Scores are:-
Gleeson
Gleeson 3+3 (Grade Group 1)
All of the cancer cells in the biopsy look likely to grow very slowly.
T Stage (Tumour-Nodes-Metastases)
The T Stage shows how far the cancer has spread in and around the prostate (MRI scan, DRE and CT scan)
T3a
N Stage
The N stage shows whether the cancer has spread to the lymph nodes near the prostate. The lymph nodes near the prostate are a common place for prostate cancer to spread (MRI or CT scan is used to find the N stage).
N1
This means the cancer has spread to the lymph nodes.
M Stage
The M stage shows whether the cancer has spread (metastasised) to other parts of the body, such as the bones. A bone scan or MRI is usually used to find out the M stage.
M1b
In my case the cancer spread to the bones, hips (especially the left hip) and the seventh rib.

Taking all these results, I have Advanced (metastatic) prostate cancer. The symptoms can be fatigue (extreme tiredness), pain in the back, hips or pelvis and problems urinating.

However, I do not have pain in the back, hips or pelvis, or problems urinating. I may get up in the night for a wee, but I can always wee without any problem. As for extreme tiredness, I am not so sure about that either, I can be tired in the afternoons and have a 'power' nap, but is that the prostate cancer, or the treatment, or is it just because I am 70? But it's not everyday and it could just be that I have got used to a certain level of activity (because of the issue with my left leg) and now I am trying to be more active I am feeling it. Another cause for afternoon tiredness, is that I don't always sleep well at night (this predates being diagnosed) and that is of course going to have an effect the next day.
 
The point is the scores might indicate one thing, but the way I feel bears no relation to those scores. If I didn't have a problem with my limpy left leg I would not have any problems (and even that is improving). As for side-effects from the medication I am taking, apart from the hot flushes, which can be quite intense at times (usually at night, but sometimes in the morning at breakfast), and itchy skin, usually after a shower, and being more emotional, I have not noticed any other side-effects from the injections, or any of the other tablets I have been taking.

It is important, I think, to have a positive outlook. There is no point in being all 'woe is me' about having prostate cancer, it's happened and mopping about isn't going to improve anything. Let's face it, life is terminal, no one gets out of life alive, and as sad as it might be, we're all going to die of something. No one knows how much time they have left, so the best thing to do is get on with life and enjoy it while you can.
 

Prostate Cancer Support Group

A support group has recently been set up in the village, by a local chap, recently diagnosed with prostate cancer, and finding he had no one to talk to, started a support group of likewise affected men.

I decided to attend, not because I am looking for support (I have quite a large support network of family and friends all looking out for me), but to go and spread some positivity.

The group has organised an event is being organised where men are  invited to take a self-test. I had no idea a self-test kit was available. The cheapest is around £5, others typically £10, and there are some more expensive ones, up to £34. The cheaper ones are like the COVID test kit, in that it gives an instant result. In the more expensive one the blood sample is sent off for testing. This is probably a better option as it is lab tested. Some of the cheaper ones have had bad reviews and maybe can't be trusted, although saying that the more expensive ones have also received bad reviews due to problems drawing out sufficient blood. This is not a fault of the kit, I think some people just don't bleed that well. But, always better to get a PSA number rather than a simple yes/on. This simple blood test could indicate whether a full PSA test is required. Like any cancer, prostate cancer is best treated as early as possible.

The event was well attended and there was a huge uptake of the free PSA kits, so much so that another event is being planned. In the first hour 124 out of 150 kits were given out.

In The News
Prostate Screening Programme

December 2025. The people that decide these things have decided that there is to be no automatic testing for prostate cancer, apart from those who have a specific gene (BRCA) in their DNA. How this specific gene will be found without widespread testing for the faulty gene hasn't been specified. This does appear just an excuse not to implement a screening programme for prostrate cancer. As prostate cancer generally has no symptoms, and how any  PSA test would, if necessary need to be followed up with other tests, namely CT and/or MRI scans plus a biopsy, it would seem to me to be just a case of the cost to the NHS.

I think men's health is being ignored, a nationwide screening programme for those men at risk ought to be implemented and more information needs to be published regarding possible symptoms. If there is a comprehensive list of prostate cancer symptoms I have yet to find it. The symptoms that I know of could quite easily be seen as a result of the ageing process, for example getting up in the night to go to the bathroom, or a reduction in the urine flow. Most recently, (December 2025) I have read that there is a link between breast cancer and prostate cancer - in that if a member of the family has or has had breast cancer, then there is a likelihood of prostate cancer in the male member of the family. This is the above mentioned BRCA gene (BReast CAncer). The percentage of men with the faulty BRCA1 gene going on to develop prostate cancer is between 7% and 26% and for the BRCA2 gene the percentage is 19% to 61%. However, the percentage of men without those faulty genes and going on to develop prostate cancer is 10.9%. In addition, there doesn't seem to be any way to avoid getting prostate cancer, smoking is definitely an issue, but diet seems to be a maybe yes, maybe no. 

Treatment Options
This is another interesting area. There doesn't seem to be one approach to the treatment of prostate cancer. If the tumour is small, the removal of the tumour could be an option, but if not treatment seems to be many and varied.

Left Leg Issues
January 2026
The situation in my left leg does appear to be improving, in that there are times when I am able to walk further before the calf pain sets in, and times when 'peak hurt' doesn't occur. There has been times when the pain in the calf doesn't appear at all and it is the ankle and the toes that are the issue - especially the toes in the recent very cold temperatures (as low as -6) when walking. Standing is better than sitting, walking is better than standing. Lying down is the worst of all. The toes on the left foot don't always feel as cold as they have been, however it can be uncomfortable wearing socks as they restrict movement in the toes.

I recently purchased (on the 2nd of January) a treadmill as an alterative to using the exercise bike, which won't help my left leg issue. I am getting use to it and have been increasing the walking speed. Unfortunately, it reads in kilometres and I'm sure if  I walk faster in miles! I have also started flexing my toes, not all the time but quite a lot during the day and even at night.

The Daily Mail, which is campaigning for Prostrate Cancer testing reported on a new prostrate cancer pill. Called Talazoparib, it blocks certain enzymes from repairing the damaged DNA in cancer cells so they eventually die.

Left Leg Issues
March 2026. I have been signed off from the Vascular clinic. No intervention is deemed necessary and I just need to take care not to injure the toes on my left leg, as a cut, for example might take a long time to heal. The right leg is fine, which is very reassuring.

Enzalutamide
I've been taking Enzalutamide since the 3rd April 2025 and this has been busy in the fight against my prostate cancer. I read the technical, medical descriptions of what it is and what it does, but I like to think of it as a prostate cancer killer.

Left Leg Issues - July 2026 Update
I think it is safe to say that I am no longer experiencing calf pain or ankle pain when walking. However, there is still an issue with the toes on my left foot. There is only capillary blood reaching the toes, which is a problem at night - trying to get comfortable is difficult - and walking on hot pavements does cause the balls of my foot to feel like they are burning. A bit like a dog's paws on a hot day. I expect the opposite in the colder weather. Standing is better than sitting, walking is better than standing and lying down is the worst of all!

Talazoparib
I have a newspaper cutting which talks about a new prostate cancer drug that is a 'lifeline' for those with advanced prostate cancer (i.e. me). Called Talazoparib, it has been given the green light to treat men whose cancer has spread. It blocks certain enzymes from repairing the damaged DNA in cancer cells so they eventually die. This does sound very good. The National Institute for Health and Care Excellence (NICE) says it should be taken alongside Enzalutamide (which I am taking), which blocks the effect of testosterone on prostate cancer cells. In my case, the combination of PROSTRAP-3 injections and daily Enzalutamide tablets has reduced my PSA level to either 0.01 or 'undetectable'. Although, my prostrate cancer has spread into the bones of my hips (mainly the left hip) and the seventh rib, I do not experience any bone pain - in fact I don't seem to have any adverse symptoms from the cancer, just the side effects of the medication and lack of testosterone; being overly emotional,  a bit forgetful at times and feeling tired - usually in the afternoons. I find I cannot maintain a high level of activity day after day, and the current heat wave (2026) certainly saps my energy levels.

The article goes onto say that patients on the Talazoparib drug trial lived almost nine months longer and had more time before their cancer got worse - this is with taking Enzalutamide. I do find the article is a bit light on information and I assume it means that the 'other' part of the prostate cancer treatment is no longer effective, so Talazoparib is added as a replacement, for what in my case would be the PROSTRAP-3 injections.

The Major Events

30th January 2026

I should say, that the NHS consultants, doctors, nurses and technicians have all been fantastic. I have been to Southlands Hospital, Worthing Hospital, St Richards Hospital and the Royal Sussex Hospital (Outpatients). I am on first names terms with Michael and Kevin at Southlands (CT and MRI scans). I have had three CT scans, one MRI, two Bone Scans (I was briefly radioactive, but deeply disappointed that I haven't developed any super powers), an ECG (heart is good, which is good as I wasn't expecting that), an Ultrasound (which discovered a 17mm gall stone (not causing me any issues - no discomfort).  Apparently, it's the smaller gall stones that are the problem as they can block the bile duct. The larger ones are unlikely to move around in the gall bladder - I found that out in a random conversation with a CT nurse. During all these scans,  a thymic cyst was found (which has all the appearance of being benign).