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November 1998 – I’m damn sure I shouldn’t be peeing claret!

I had a slight show of frank Haemature (Blood in the urine) on one instance in Nov-1997 thought nothing of it as it as it was only a ‘splutter’ at the start of urinating one morning.

Then Nov-1998 I had a very frank show with a full bladder first thing in the morning & my urine was dark red!
I immediately phoned my Doctor & saw him that morning, whilst I was in his surgery he phoned the Urology Department and arranged an appointment for 13:30hrs. the next day!

I started this diary about a month later as I felt it might make other more relaxed about talking of their health and thereby presenting early, which might save their lives!

22-Dec-2000 – Dr. Gupta – All OK

24-Jul-2011 – 12.30 Not good!!

21-Aug-2001 – CT Scan

02-Sep-2001 – ? – ADMISSION

03-Sep-2001 – Medical Checks

04-Sep-2001 – X-Rays

05-Sep-2001 – THE MAIN OP!!! **************************************************

….CANCEL – 01.09.13 – 13.50 check up at R.G. Ward D2 West
….CANCEL – 01.09.16 – 11.00 admission at R.G. Ward D2W !!!!

16-Sep-2001 – came home!! WITH infected wound but safer at home!

05-Oct-2001 – appt. Windsor Bowsher @ Chepstow [wound still infected]

05-Nov-2001 – appt. Windsor Bowsher @ Chepstow [wound sealed BUT red]

11-Dec-2001 – appt. Windsor Bowsher @ Newport [I was concerned about bloating and immobility of damaged muscle. He recons no medical problem but could wear a corset!!]

07-Jan-2002 – 11.05hrs. appt Windsor Bowsher @ Chepstow CANCELLED

24-Jan-2002 – appt. 10.30hrs. ROYAL GWENT for FLEXI – A/OK

06-Feb-2003 – appt. 10.00hrs. Windsor Bowsher @ Chepstow [OK but don’t consider op. to cure bulge!!]

04-Mar-2003 – appt. 14.40 Newport Urology level 2 for Flexi. – Sam Bennett SHO pronounced BLADDER CANCER – quoted 4-6 weeks for TransUrethral Resection Bladder Tumour (TURBT) and X-Rays prior

18th. NO NEWS so rang Janet Marti – she checked – no appt. but in system.

19th. Janet NO Progress,

20th. Janet NO Progress,

21st. Unable to contact Janet – spoke to Cath Smith 15.15hrs. promised to contact me back TODAY – I called her & they WILL call me on Monday with dates etc.!!!.

24th. (Monday) I was out all day and hospital rang 4 or 5 times. Finally Karen Edwards spoke to me 7pm. from home. book in am. please!!

25-Mar-2003 13.30hrs. booked in saw Windsor Bowsher & Janet Marti – met rest of team – anaethetists etc. – bloods etc.

26-Mar-2903 – operation for bladder cancers on a spinal anaesthetic 7 or 8 early stage TCC (Transient Cell Carcanoma)

27-Mar-2003 – Mytomycin treatment of bladder and then discharge @ 17.00hrs.

13-Mar-2003 – passed a clot of blood – probable scab from op. spoke D2W 21.15hrs. confirmed likely cause.

19-Mar-2003 – 09.00hrs. IVU – they took 8 or 9 plates!!

26-Mar-2003 – 08.00hrs. passed another clot – spoke to Janet 10.15hrs. – probable residual from op. [rest of day clear]

27-Mar-2003 – 11.30hrs. Ist. 15% pink brown rest clear. [rest of day clear]

28-Mar-2003 – 08.00hrs. large clot at start frank for 25% then clear. [rest of day clear]

29-Mar-2003 – 08.10hrs. start with small flakes first 20% dark burgundy then clear. [rest of day clear]

07-Apr-2003 – 11.00hrs. Follow up appt. @ Chepstow Windsor STILL off sick! Dr. I saw – an over weight guy pleasant – informed me biopsey of my bladder cancer a very slow developing type – I suggested downgrade to check 1 per 6 month – agreed as eventually the check up will damage knowing my luck!!

C10th.-May-2003 Windsor due back!

10-Jun-2003 – 14.40hrs. Royal Gwent for a Flexi check!! – Saw Janet – Straight in for Flexi – small C reccurrence and enlargement of a node of the Prostate. Come in and have a flow check & PSA at the same time as Hot Wire!! – No better place to be Hot Wired than Newport they get lots of practice!!!
Went in for a quick chat with Bowsher – relative to 100% he is quite pleased with my progress – will book me in top of his ‘non urgent’ list for about 3 weeks time. Existing muscle pain and fatigue – tough, part of the price you pay for the removal of cancer!!

03.J ul-2003 – 0900hrs. for minor bladder op. hotwire, as day patient. Painfull but all OK!

01-Sep-2003 – appt. 11.30hrs. Windsor Bowsher @ Chepstow – saw Windsor all seems OK but had some bloods done. [next flexi CNov.]

09-Sep-2003 – appt. 09.30hrs. Urology for flow metering!! CANCELLED due Father’s death rebooked:

20-Oct-2003 – LETTER – from Bowsher Liver, Kidney & PSA OK on the bloods.

‘03.10.28 – appt. 09.10hrs. Urology for flow metering [one week prior – measure!] 983mls full > 363mls empty. Suggested regular self catheterisation to fully drain! Waiting till after next appt. to decide!

14-Nov-2003 – appt. 14.00hrs. Newport – attended but re-measure showed 160ml retention only thus self cath. not needed.

09-Dec-2003 – appt. 14.00hrs. Flexi clinic Newport – Dr. Johnathan ? new site!!! need hotwire. Saw Windsor for a chat all OK – he is quite pleased.

11-Dec-2003 – appt. 13.45hrs. D2W for pre op. bloods etc.

16-Dec-2003 – Tuesday in for a couple of nights – phone ward to confirm Tues am. 01633-234 040 went in during afternoon but saw a junior Consultant discussed my preference for flexi & hot wire – he conferred with Windsor & agreed so I went home!

17-Dec-2003 – 08.30hrs. in in time for morning theater – flexi + hotwire [by a youngish Indian chap] AOK and I was out by lunchtime.

02-Jan-2004 – commenced taking RX 10mg. XATRAL XL tablets one a day – reduces Prostate restriction AND blood pressure as a side effect!

08-Mar-2004 – 11.05hrs. CHEPSTOW – appt. Bowsher – he’s happy with me but we now intend to have a course of 6 Mytamicin C over 6 weeks. Treatment MMC + Sodium Bicarbonate & NO fluids from night before – based on Jessie Au’s paper. Last treatment of 6 6th.May’04

10-May-2004 Monday – Windsor Bowsher died age 47!!! 11th. May funeral 20th. May STUNNED!

15-Jun-2004 – 14.50hrs (Tues) Flexi – ALL CLEAR 🙂 – NEXT CHECK +-3 MONTHS

29-Jul-2004 – 13.45hrs. (Thurs) see CARTER [my new specialist] – (also confirm Janet’s daughters painting!) – a basic all clear so far, treat kidney as history – can do nothing about muscle damage & scar but he believes that bits of bladder can be sorted for ever.

18-Nov-2004 – 14.20hrs. (Thurs) Flexi. – prostate enlarged central node and tumour returned part concealed by prostate. Will require op!

11-Doc-2004 – spoke to Janet and then Cath – total cock up they booked me for flexi hot wire but I need rigid and a couple of days!

CANCELLED 14-Dec-2004 – 0900hrs. (Tues) pre op! ?

CANCELLED 17-Dec-2004 – 0800hrs. (Fri) hot wire BOOKED FOR WRONG OP!!!

30-Dec-2004 – 0920hrs. (Fri) pre op! D2W

03-Jan-2005 – 0930hrs. (Mon) check for bed for op. on Tue CANCELLED – NO BED!!!

06-Jan-2005 – pm Janet has informed me my op is rescheduled:

10-Jan-2005 – 0930hrs. (Mon) check for bed for op. on Tue. OK & in

12-Jan-2005 op done having been postponed from yesterday all OK pleased with condition of bladder.

13-Jan-2005 – 1345hrs. Spoke to nurse on D2W who referred to ‘Gail’ had 2 instances of frank haematoria but dark brown red.

13-Feb-2005 – 1145hrs. Produced a scab type plug – Spoke to Ann Brasher keep an eye but don’t worry.

13-Jun-2005 – 1330hrs. Flexi. Check-up FIRST ALL CLEAR

15-Dec-2005 – 1400hrs. Spoke to Janet M. happy Christmas etc. I’m due for January.

24-Dec-2005 – Heavy Frank Urine with particles 17.00hrs. Mild Frank at 21.30hrs. Cleared by 22.30hrs. Spoke Sister D2W 23.15hrs. Don’t panic OK if no repeats but ring on Wednesday.

25-Dec-2005 – Dark dead blood in urine about midnight. Spoke to ward better to be checked but as long as you are sensible!

28-Dec-2005 – rang requesting rapid apt’ment for check-up.

29-Dec-2005 – 14.00hrs. Flexi. Check-up – clear recurrence on floor & adjoining prostate! That explains the bleed [capillary invaded/broken!]

18-Jan-2006 – 10.40hrs. D2W – Premeds [done by Steff.]

30-Jan-2006 – 11.00hrs.-17.00hrs.? D2W for op. Alan Thomas list. Bed probs. all day eventually OK 18.00hrs. and went in at 21.30hrs.

31-Jan-2006 – c11.30hrs. theatre. epi. by John Lloyd-Jones? Alan Thomas op. small growths in one site but stone lodged in situ – broke stone c1cm.

01-Feb-2006 – 11.30 discharge OK next appointment c3-4weeks. [spk. Janet M. 02-Feb-2006]

14-Mar-2006 – 14.55hrs. clinic Alan Thomas – AOK – next flexi end June or July

31-Aug-2006 – 14.10hrs. Flexi check Maureen did check aided by Anne – its back over the back of the prostate centre lobe expanding!

26-Sep-2006 – Pre-op for TUR + TUPR – Samantha pre.op Sister Dr. Adam Vill? Dutch

19-Oct-2006 – phoned Urology Admissions got provisional date – spoke re: outsourcing secretarial services to India! to Jill M.

05-Nov-2006 – provisional for op on 06 – In on 6th. 11.00 C7East prep. etc. op. @ 14.30hrs. No problems small TURP + biopsy. Epi by Sarah Lloyd-Jones Op. Alan Thomas.

08-Nov-2006 – out OK lift home Gerald.

21-Nov-2006 – biopsy result – malignant but slow!

24-Nov-2006 – CTScan result from Huw Davies – Thorax & upper abdomen no Distant Mets. Abdomen, Liver, Gall Bladder, Pancreas, Spleen, right kidney no abnormalities. Signs of changes related to emphysema in upper lobes of both lungs!

12-Mar-2007 – 13.40hrs. Flexi check – hey ho its back again! This time it looks as if it may be CIS but without biopsy can’t tell BP:146/100 – so now for the wait for a date for TURBT

14-Mar-2007 – 10.20hrs! Pre Admission Med. By Theresa – BP:120/86 – all OK now wait for date!

30-Mar-2007 – 16.35 – spoke to Bridgette probable in on 9th. Morning list 10th. Subject conf.

03-Apr-2007 – 10.50 – spoke ? For Bridgette day of surgery 11.30

09-Apr-2007 – 17.00 = in for morning list (Thomas) [I checked in @ 19.00hrs. Then came back at 21.30 and read till 0210!

10-Apr-2007 – SURGERY – Trevor from Powis Alms Houses in bed opposite! Woken ot 0615!! A Mr. Huff doing op under Thomas – A young girl with Jones? As anaethetist – most annoying as for inexplicable reason once on op. table I was out like a light so couldn’t see the op. Came to’ish in recovery but dozey back on ward – catheter no sign of bleeding saw Huff & Thomas – both said Very Minor doing biopsy but fairly optimistic. Catheter out at 16.00 home at 17.30hrs.!!

10-May-2007 – letter from Alun Thomas – Results from last op. no sinister signs
Biopsy no sign of recurrence of the cancer cells – GOOD NEWS! Makes a change. Suggest next Flexi in 4 months (actually he said “we will look inside the Bladder with a telescope”!! I do hope he & Nelson have a different definition of a ‘telescope’!)

03-Sep-2007 – letter for next appointment.

18-Oct-2007 – 15:00hrs. Royal Gwent Hospital Urology Department for a Flexi  visible blemish MAY be very early TCC may not? Op. now or wait – we decided to wait.

03-Apr-2008 – 15.05hrs. Phoned and booked my next Flexi.

28-Apr-2008 – 13.00hrs. Royal Gwent Hospital Urology Department for a Flexi
Well there you go! Turned up on time, straight in and got my jug just in time! Maureen did my Flexi and we have an all clear, though with the caveat that the Prostate is getting notably enlarged at the central lobe but although worth keeping an eye on is no concern yet.
Enquiries on patching the main hernia still lead to the suggestion to leave well alone even though it does cause me very genuine problems.
Next appointment is scheduled for 6 months.

08-Oct-2008: Letter – appointment letter arrived -strange as I was chatting to Michelle Penngelli on Tuesday this week.

28-Oct-2008 – 17.30hrs. Royal Gwent Hospital Urology Flexi – a serious brush with winter! Snow on the M4 at Swindon!! Car park easy near entrance and popped into D2W & had a chat with a couple of nurses I knew. Into Urology Clinic and fairly rapidly in for check. Dr. took longer than normal blaming the Prostate as enlarged and wanted to access beyond.
All clear! He thinks about time for a PSA but no direct reason and it might be worth checking the male pattern groin hernias if they cause any pain.
Next check for BC about 6 months so about April.
Flexi (lost Date!) Maureen Hunter did the flexi – all clear but prostate developing well!!

BPH – No need to worry until it proves a problem.
Message on answerphone samples OK. Next check about 6 months.

2009-11-13 rang as I either have a problem or an infection as intermittent ache front upper bladder slight burning from urinating and very occasional flash pain. All sisters in management meeting – Steff will try to call me back.
Spoke Sue Merrino Flexi Bookings

24-Nov-2009 – 14:50hrs. (Tues) for Flexi.

09-Oct-2010 – dull ache to bladder exacerbated by urinating – mild frank haematoria – called spoke to D2W spoke to emergency Dr.
Trimethoprim 200mg prescribed for pos. infection.

11-Oct-2010 – spoke Steph – complete anti biotics send sample soonest will book in about 2 weeks.

26-Oct-2010 – 17:15hrs. (Tues) for Flexi. OK signs of the infection but not considered sinister. Prostate very enlarged! Will check again in a couple of months that infection totally cleared & no after effects.

23-Dec-2010 – 13:30hrs. (Thurs) for Flexi by Maureen – Tumour of some sort! Second opinion Dr. Raman. Back in soon for op.

31-Dec-2010 – 07:00hrs. Op on bladder am. By Dr. Raman. Tumour sited on stub of left Ureta entry to bladder – burnt away and captured for biopsy. Expect possible further surgery about 4 weeks. Discharged mid afternoon 2011-01-01

03-Jan-2010 – Unhelpful bleed Sunday – spoke to Mary D2W – then infection!

04-Jan-2011 – saw doc. Urine test – Keflex 250mg. 4 a day!

05-Jan-2011 – saw doc. With fungal infection now using Daktacort ointment.

13-Jan-2011 – feeling tired all day – C22:15hrs. Bladder discomfort and then frank mixed (no lumps) haematoria! – drink plenty and take self to bed – lets hope it stops!

18-Feb-2011 – still no hospital date rang Sue – WOOPS!!! She will sort it and call me am.

10-Feb-2011 – 11:50 Dr. Pink – seems I have CKD (Chronic Kidney Disease!) reading 47 was 54 in 2008!

16-Feb-2011 – 15:05hrs. GWENT – R.L. GOWER – not sure why I’m seeing him! He’s isn’t too clear on my ‘stuff’. Janet took over!

17-Feb-2011 – PHONE CALL from Janet – Adam Carter wants a CT Pelvis & abdomen with contrast – Janet off next week phone Radiology direct Wed onwards!

28-Feb-2011 – CALLED Janet – CT Scan booked !

03-Mar-2011 – 12:30hrs. Neville Hall – Radiology – CT Scan –

17-Mar-2011 – 11:45hrs. Gwent – Adam CARTER – Lee came with me as I had a feeling this was NOT going to be good news and she deserved to see the pictures, hear the words and ask any questions she wanted asked – it is after all Lee who I am letting down!

Regards,
Greg_L-W.