Learnt of a tragic loss today

I often read and take part in the support forums of Macmillan and ProstateCancerUK , I find them supportive and a comfort. Its great to be able to converse with people who are going through the same journey as yourself and also get support from their partners who understand what we are going through. Today I was quite shocked and saddened at the death of a chap on the forums who passed away aged 60. He was diagnosed with the same Gleeson Scores as me 7 years ago and had the same operation I am having. It really hits home that even after you have the operation you have to hope the cancer hasnt broken out of the capsule. Also, if it has, you have to have faith to fight on. As he did. Got to think positive and hope its all contained and can be removed. Dont fancy the years of radiation, hormones, chemo ....

Went to a horse show today that was raising money for Cancer Research UK and wore my new fundraising t-shirt from the latest StandUp To Cancer TV campaign launched on C4. Have also ordered a hoodie as the funds go towards research and a cure.

I do need to learn to smile more ...

Had a go on my daughters friends horse .. for a photo..

28th Sept 2012 .. Its getting closer

Two envelopes in the post to day from The Priory Hospital in Birmingham.
One for my pre op visit next thursday 4th Oct as an outpatient. Lots of questions to answer and a form to fill in with details and Bupa account information.

The second was for the inpatient admission for 9th October for the cancer operation. Pages of questions to answer on my health and medical history. Lots of 'N' for no's as I havent really been in hospital or been seriously sick at all in my life.

Great little booklet describing the hotel .. woops .. hospital facilities .. the sat TV and the WiFi .. looks like I will be able to blog and use facebook whilst I am in there to pass the time away.

Forms all completed and sent back in the 1st class reply paid envelopes .. its all happening. Just got to make sure I done get sick or catch a cold in the next week .

27th Sept - So good to speak with someone .......

Thursday I had a phone call from Ian, from the local prostate support group near where I live. For weeks I have been reading forums and exchanging small messages with people online. But to actually speak with someone who has gone through everything I am going through at the moment was such a relief. It was calming, re-asssuring , whatever we would like to call it - it was just what i needed right now. I was able to explain what was happening and he was able to share with me his journey - somewhat very similar - same Gleeson etc.

There is so much you cannot put down in forum messages that you can discuss in conversation. Exchanging views on transport, talking about the after effects and recover aspects, the post op and pre op. Ian also spoke with my wife before speaking to me and was able to put things to her about what would happen that I dont think she fully knew as I hadnt gone into that much detail - I hadnt managed to find the words. I think sometimes that a problem when you are close with your partner.

We chatted for about an hour and it was the best conversation I have had , apart from the meeting with Mr Doherty , since I was told I had cancer.

Things are looking up .. you never know .. I have bought a lottery ticket just in case my lucks in -:)

Ordered myself a Stand Up For Cancer hoodie to go with the T-Shirt I have bought. Gonna wear my hoodie and t-shirt when I am in hospital. Proceeds of the purchase go to Cancer Research UK.

http://www.standuptocancer.org.uk/

Will be watching the channel 4 programmes while I am in hospital .

Final climb up a mountain for a while

22nd September was a lovely day, an early frost and clear skies. A drive from England over the border to Wales and crossing the county boundary into Conwy I was greeted with the magnificent sight of the mountains, The Carneddau, The Glyderau, The Snowdon Horseshoe. It was going to be a fine day, walking the Snowdon Ranger Path to the summit of Yr Wyddfa, Snowdon, supervising two groups of Explorer Scouts who were to be invested on the summit by their Leader.

What a great day to be blessed with good weather for my last venture onto the hill before the operation in two weeks. Hopefully I will be back on these magnificent hills for Christmas or January.
Photos from my day on Snwodon

The day went very well, both groups and a group of parents all got up the mountain and back down again safely. I had a pleasure of walking down the mountain with Explorer Leader Amanda who went up on the train as she was recovering from knee surgery . She took the opportunity to walk down the mountain on her crutches - 3 hours of hard work and bravery. She was inspiring.

19th September 2012 - NHS Farce strikes again

Arrived home after workign in the south for a couple of days and there was  a letter from Shrewsbury & Telford Hospital Trust.

Remember that 'urgent' referral they were arranging so i could have a second opinion on what treatment I was going to have. Well this is urgent for them - December 2012, nearly 5 months after I asked for the second opinion. I find this really incredible.

If I had not gone private and sorted out my treatment I would be sat at home with all the worry of wondering what was going to happen. Basically I feel that the initial consultant on the NHS tried to railroad me into a treatment , because I didnt accept this and asked for a second opinion they put me on active surveillance so they could tell the government \ NHS they were doing something, when in fact they were just fiddling statistics.

We say we get the NHS for free, well we dont, I and millions of others pay high taxes for this service and this is a sham. Maybe its just the area I live in - its in the countryside, not a big city.

I do hope the rest of the NHS services i will need after my hospital visit wont be like this.

One plus point today, Macmillan Cancer Care ( Charity ) sent me my personal organiser so I can put all my details in the one book. Its like a fileofax binder with all the right pages in it to put in your diagnosis, tretament, personal details, doctors, nurses, next of kin  .. basically everything. All in a handy binder that I can carry around with me.

http://be.macmillan.org.uk/be/s-435-macmillan-organiser.aspx?utm_source=homepage&utm_medium=heropanel&utm_campaign=macmillanorganiser

17th September 2012 - Hospital Information Arrives

A large envelope drops through the letterbox. Its from The Birmingham Prostate Clinic and the Clinical Nurse.

All the infromation I need about my up and coming operation, the details I need about the hospital, the pre op and what to do and what happens on the day of the operation. All very informative and helpful. Lots to read, but of importance are the Kegel exercises information - I need to start those and get my pelvic muscles strong for post op incontinence. They are handy to do, as I drive 6 to 7 hours a day, they are something I can do in the car or whilst sat behind an office desk.

Two other surveys within the pack had to be completed, one on the current state of my urinery system. This is so that there is a baseline  to judge against after the operation so we can see how recovery is taking.

The other concerns erectile function . Interesting as its based around the last 4 weeks. Only problem with this being the fact that due to the biopsy and passing blood from the seminary vessals you dont really fancy having sex!! Hum not good, but I answered the quesions as best I could. Its important knowing whats going to happen. Most people I have spoken with on the forums reckon its a long time before their 'member' stirs into life. Well my mother always said I should be a priest - maybe its about to happen ... or at least the abstinence -:)

14th Sept 2012 - Surgery Arranged

Well, as good as his word, Alan Doherty's PA phoned me at home. She was lovely, explained everything simply for me so I could write it all down.

Mr Doherty will be doing a flexible Cystoscopy ( http://en.wikipedia.org/wiki/Cystoscopy ) on me on thursday 4th October as a day patient at The BMI Priory Hospital in Birmingham (http://www.bmihealthcare.co.uk/priory ). 

I was given choice of 7am or 9.30am. As I would be driving myself I picked the 9.30am appointment - it still means I have to be up and out by 6.30am to get through the motorway traffic. The procedure will be done under local anesthetic.

At my previous meeting with Mr Doherty he had described this procedure and also said that he would be able to show me at this time the pelvic floor exercises I needed to do. ( Typically I have already researched these and started to do them Kegal Exercises )

Zena ( Mr Doherty's PA ) , also booked me in for the surgery at The Priory. This would be tuesday 9th October 2012. I have to be at the hospital no later than 7am as Mr Doherty starts his list at 8am. She also said that I need to be relaxed and not stressed up. Well at least if I miss the motorway madness by being up early it will help!.  She also confirmed that the anesthetist would be a Dr Faroqui.

The Priory will send me an admission pack with all the details I need. She has provisonally booked me in for 5 - 7 nights as it may be that I might need a full 7 nights. ( When I spoke to Bupa they said this would be ok as long as the clinical team at the hospital contact Bupa and explain the reson for the additional 2 nights as the procedure os normally 5 days - no problem ).

Well that was all systems go.

Phoned my Bupa support team and gave them all the details Zena had given me. They gave me all the authorisation codes the hospital will need and they wished me all the best for everything. They were great and told me to call them anytime if I need help with anything. They also told me to contact my GP and brief her, also they said to ask the consultant to write to my GP and get the GP to prescribe under NHS any take home medication that the hospital might want me to take as Bupa would not cover a private prescription. (Interesting - they did say this shouldnt me a problem but speak to GP)

So we now wait and whilst waiting I have started to do my Kegal exercises http://www.johnshopkinshealthalerts.com/alerts/prostate_disorders/Kegal-exercises_6215-1.html

10th September 2012 - Saw my new Consultant - Brilliant

Went to see Mr Alan Doherty, in Birmingham and went through my case with him. Significantly, he had my MRI from the hospital with him and he could explain this. ( Thanks to Dr Parnell at my GP practise for here efficiency ).

Yes there was cancer in the central zone. The biopsy being done before the MRI had also caused some problems there with the clarity of the MRI. He did explain that the clinic would probably have done the MRI before the biopsy as its normal to see the trauma in the prostate caused by the biopsy. ( I have heard and read about this online and through support forums ). But it was still correct for a biopsy to have been done based on my PSA and my family history of my father haveing PCa. ( Prostate Cancer ).

Having gone through the clinical side of things, we discussed myself and my life. 52 years - Young. Healthy - I hillwalk and mountaineer, dont smoke, also we dont want any new children. Water works and erectile functions are fine. So the consultant said - why would I need a prostate? He explained that its only there as part of the reproductive system. So if we can remove it and minimize all the side effects then that would be the goal. So priorities in order would be :

1 Cure the cancer - get it all out
2 Minimise the incontinence issues and use a procedure that helps with this
3 Maintain erectile function - so save the nerves - all of them where possible
4 Leave an option in the even of cancer re-occuring in later life for more treatment

Based on the ability to do all the above, then the discussion centred around

laparoscopic radical prostatectomy
Robotic laparoscopic radical prostatectomy
Open radical prostatectomy

At this point in time I didnt want any radiation - this could come later in life if cancer ever comes back, also if when they operate they find that the cancer had already broken out of the capsule.

Mr Doherty had a fabulous and simple way of describing the cancer in the Prostate. I must admit, I have read 5 books, including the distinguised surgeon Dr Patrick Walsh's Guide to Surviving Prostate Cancer, and the simplicity of Mr Doherty's explanation was amazing. He used a dictaphone ( prostate ), cassette ( cancer ), paperclip ( escaping cancer cells ). With these simple tools he explained to my wife and I the whole procedure for removing the prostate and cancer and the dangers of cancer escaping the capsule. I forgot to ask whether he was ever a scout or scout leader as this improvisation was brilliant.

Of the three surgical options, the Open surgery, though more complex and taking longer gives the best results. This gives the option of proven results with regard to Bilateral Nerve Sparing - key to item 3.  Also, the Open procedure has other benefits of the surgeon having more to work with. Mr Doherty has done over 2000 prostatectomies and 400 of these have used the nerve sparing technique and are auditable. http://www.harleystreeturology.com/the_prostate/treatments/nerve-sparing_prostatectomy.php#

Mr Doherty also spoke with my wife and put her mind at ease concerning all of this.

Mr Doherty also described his monitoring of patients and the index-case system. I would be one of the index-case patients who would be monitored as part of his study and results auditing. I had seen this on his website and as an Account Chief Technologist for HP I had been impressed by the use of technology and analytics in the monitoring of patient outcomes. I feel honoured actually to be part of this study by Mr Doherty. http://www.birminghamprostateclinic.co.uk/news/news_2012_09_10.php

I was so uplifted and agreed therefore to move forward , with confidence, with this procedure. As I said to him when he asked me what I wanted - I told him that he was the expert, not me. I would be in his capable hands.

He said his PA will set it all up for October 2012 as he beieved his caseload would be full in september.

6th September 2012 – things are moving

Took a phone call from my GP’s surgery at home.

The wonderful young doctor who had done the original referral phoned - Dr Parnell.

She had the message about going to the private clinic and seeing a private consultant.

No problem, she would fax a letter to him this afternoon. She would also get on to Shrewsbury Hospital and get copies of the MRI which are computerized, sent to the private clinic.

She said this would be done electronically so they would have them later today.

We had a chat and she said the private clinic would keep her in the picture.

If I have any problems at all, I should go to the GP practice and she or a colleague doctor would make things happen. Whilst she was on the phone she also confirmed my repeat prescription for my blood pressure tablets was waiting to be collected.!

Spoke to Bupa – they re-iterated that all the costs will be covered by them for the private consultancy and also any hospital and post-operative treatments.

Both Mr Doherty, The Birmingham Prostate Clinic, and The BMI Priory Hospital in Birmingham that I am using are on their fee assured lists and approved.

5th September 2012 – time to take control of my life

I have spoken to NHS and told them I will be arranging an appt with another consultant myself and will keep them informed. They also advised me to speak to my GP and keep them in the loop.

Spoke to my private health insurance and got the names of two consultants and their secretaries. ( Both names I had in my research list from the Internet and seeing who were leaders in the field of keyhole\robotics within commute distance from my home ). 

I looked at a survey of top urologists done in 2010 by The Daily Mail who asked doctors who they would get to treat them. I then looked at which of these were located close to me, commutable by car or train taking into account that I may need to go back and see them after any procedure. The best is a chap called Alan Doherty from The Birmingham Prostate Clinic http://www.birminghamprostateclinic.co.uk/ who is also at http://www.harleystreeturology.com/ 

Confirmed with the insurance (Bupa) that costs would be covered by them and they have emailed me confirmation of that. The consultant being used is on their books and is 'fee assured' so I know the costs are covered. Also his clinic is on their list and comes highly recommended. Now just the nervousness that he has the time to see me and sort me out.

Phoned the secretary for the consultant urologist, Alan Doherty , gave all my details including my insurance account to cover the costs. What a fabulous conversation with his secretary. I nearly fell on the floor with shock when she said I could be seen first thing Monday morning, that’s in 3 working days time. Why I didn’t do this several months ago I don’t know!! She also told me that Mr Doherty is wonderful and he would put both myself and my wifes minds at ease.

When I put the phone down, it was like lifting a huge weight from my shoulders.


Phoned my GP practice, they are faxing a letter tomorrow with my details to Mr Doherty's PA.

I now have some control of my own destiny.

At least now if I screw up its me , I have control of my journey - I hope

5th September 2012 - how the NHS can make you even more anxious!

As I write this it has been 16 days since I spoke to my NHS clinical nurse who told me that the NHS consultant who I saw 3 weeks ago was arranging a second opinion with another consultant on the NHS.

As I hadn’t had any contact I phones her for an update – I am so glad I did.

Apparently there had been some complaints concerning appointments and the lack of them happening. Not by me I might add. I apologized to her for calling and just said I would be grateful for an update. She checked the records on the hospital system and apparently no appointment had yet been made. She also told me that the consultant was now on holiday until near the end of September. We had a lovely friendly chat where she was able to tell me that this consultant only did open operations, not keyhole; we both agreed therefore that he wasn’t the best man for the next meeting then.

In talking she said that normally the hospital operates what they call a tracking system for appointments for cancer patients. But as my original consultant had marked me down for Active Surveillance ( even though this wasn’t my end goal ), it seems the trackers were not put on my case. If I hadn’t pursued this myself I could probably have waited months - or to the end of September as I am having another PSA then.
So basically she confirmed that as I had turned down the original consultants offer to operate on me , I was marked as an AS to enable the statistics to be noted up for the NHS\Government. Shambles.

What is worse, this has caused anxiety that I didn’t need. I spoke with my nephew who is hospital doctor and he told me that the 'system' was flawed and I would be better going private. In my case it is looking that way. Its hard enough knowing that you have cancer inside you and living day by day with that thought, without the worry that your medical team may not be engaged fully on your behalf.

I have been thinking this all through, its like a project \ programme plan that has milestones agreed. One of these major milestones was the second opinion where my wife and I would attend , gain reassurance and then agree the next milestone, the treatment\cure option.

In my case the people who had jobs to do to enable the milestone to be completed didn’t do their job and I as the PM was blissfully unaware that the milestone would be missed.

So - as when all projects fail, it’s time for some proactive management.

30th August 2012 – still no news on second opinion

Its been over two weeks since I saw the urologist and no news on the new appointment.

Can only assume that I am caught up in the holiday period and bank holiday. Maybe I will hear soon.

I have been reading some really interesting articles in the Journal for Oncology with reference to studies done on men with early localised prostate cancer and Gleeson 6, PSA > 10.

Several of these studies have noted that over 70% of men who had this 'low risk' form, when they had RRP and pathology was done on the removed prostate, these individuals had clinically significant disease.

Therefore you can assume that if they had gone on Active Surveillance and no noticeable change was noted in the 3 or 6 month PSA tests, or if an annual biopsy didnt pick up the cell changes, then they could well have lost their 'cure' window. Something that came out in Dr Patrick Walsh's book Surviving Prostate Cancer - where he said it was a mistake not to choose treatment when the first opportunity arrives

29th August 2012 – another book finished – I know now what I want

Just finished reading , The Decision: Your prostate biopsy shows cancer. Now what? 
: by Dr John C McHugh.  http://theprostatedecision.com/ 

This has really confirmed to me that I need to do something to save my life in my 60's. I have a chance now, at 52 to do something that will extend my life\quality of life in my latter years.

At 52 and healthy the prognosis is meant to be very good to get through the surgery ok. Also continence should be restored fairly quickly if i have no complications.

Erectile Disfunction  - well as another book I read said, " Dead Men dont have Sex", so though important, I think thats down the list of priorities. http://www.amazon.com/Dead-Men-Dont-Have-Sex/dp/1451577877

Mentally therefore I am getting there. Still have this fear of the unknown and being put out for an operation - have never had it done before in all my life.

21st August 2012 – so where is the appointment for the second opinion????

I phoned and spoke with my clinical nurse in Shrewsbury. Discussed my concerns with her and she was fabulous. She is on holiday next week, as I am, but has said that she will go with me to the next meeting with the urologist. She will also have a private meeting with me and my wife afterwards to go through everything again to be sure I am happy and didnt miss anything.  Told her that really my mind has come around to the surgery but I want the right surgeon so I can have the best chance. Told her what Prostate Cancer UK said about the surgeon needing to be doing over 50 of the procedure a year. she was surprised at this but said we could talk about getting it done by another health authority. 
She checked my records and said all the scan information was there now, the new urologist will therefore have the information. She said the letter of referral to the new chap was in his secretary’s tray and she would make sure it gets actioned. Told her i would phone her when i have the appointment confirmed so we can arrange for her to be there

15th August 2012 – I wish I could get away with blagging results to my clients!

Ah well - had my meeting with the Urologist and he confirmed that the MRI says the cancer is organ contained. 
He is not recommending Active Surveillance despite the fact he staged it as T1c and it has a Gleeson 3+3=6. 

He wants to do a Nerve-Sparing Radical Prostatectomy via keyhole, he had a preference for that over radiation. However when I asked what nerves he will save he said left side only and used the excuse that he couldn't guarantee clearing all the cancer if the left in the right bundle of nerves.

Am not happy as I queried this as it goes against everything i have read. This procedure was invented by Dr Patrick Walsh in the USA and if my cancer is not in the outer aspect of the capsule then I don’t see why he couldn’t save both sets of nerves. He really didn’t explain this well.

Suspect there is something I am not being told or he doesn't have all the information. I asked for my prostrate volume and he said it was 33. If this is correct then Epstein's research (|Epstein is a leading doctor in the USA at the famous John Hopkins Institute )  would say my PSA should have been around 3.3 and it was 5.3 - that would indicate an aggressive cancer not a low risk. Also the Density would be 0.16 again indicating aggressive. Also my freePSA was only 8% which would also tie into these findings. He wasn’t interested in any of this side of things.

Could be that this is why they don’t recommend AS and want to do surgery - but it all didn’t add up. I asked him if I could have a second opinion and he said he would arrange it for me with another urologist in Shrewsbury.  I will be quizzing the new consultant. In the meantime, my  present urologist said he would put me down on Active Surveillance - not happy with AS though as its like having a ticking time bomb inside you. Dont know how long I can live knowing that cancer is growing silently inside me. He gave me a PSA test form and told me that I needed to go to my GP with the form on or about 5^th October and have another blood test.

Was a little annoyed as the urologist couldn't give me any idea of how much cancer was on the MRI's and locations. Hopefully things will get better with the second opinion person. The most frustrating thing is all the sitting around and waiting.

Another upsetting aspect of the meeting with the urologist was the speed of the meeting. All very clinical and no time to think. It was as if I was being asked to make a decision there and then to satisfy some NHS target. When I told him I needed time to think and I wouldn't make a decision there and then it was as if he wanted me out asap to get on with the next person. 

If the next person is anything like this then I will immediately go private under Bupa. I think my heart is already telling me to do that.

The next day I received a letter from the hospital confirming a booking with the urologist in 12 months time  - so I suppose that’s the last time I will ever see this urologist.

Apart from 15mins doing a DRE and initial consultation, and 10 mins telling me what an MDT team had already decided as he didn’t have my notes – that was the sum of his involvement. I wouldn’t employ him if he was in my profession.

7th August 2012 - If you have ever been potholing or wondered about a coffin that is too small for you …. Meet the MRI machine!

7th August came and I now know that I do not like confined spaces. The scan lasted about 40 mins in total, about 30 mins in the machine - I nearly panicked. By the way, I took my own music in for them to play for me over the headphones. I took the Bee Gees Album of hits. "New York Mining Disaster" wasn't the best tune to be in a confined space suffering an anxiety attack!.

I was so glad to get out of that machine.

Post the MRI I spoke with Bupa, checked the NICE recommendations and now know all about Active Surveillance. I have read Ralph H. Blum and Mark Scholz, MD's brilliant book, Invasion of the Prostrate Snatchers. Ralph refused to have his prostate removed and went on surveillance for years – but I don’t think I could have done what he did. Also the various treatments he had to slow down his cancer. Not my cup of tea. Also, Ralph was older than me when diagnosed.

August I read the third edition, of Dr Patrick Walsh's , Guide to Surviving Prostrate Cancer.
This is almost a bible for prostate cancer suffers and I would recommend this book to everyone as it has all the treatments inside, in easy reading format and technical. Use it like a reference book. Its an important book as this chap was the leading surgeon who invented the new procedures that stopped men dying on the operating table

17th July 2012 – the day I thought would never happen in my life !

I attended Royal Shrewsbury Hospital for my results and saw my clinical nurse. Now all through the tests, PSAs , DREs, Blood, Biopsy’s I was confident I was ok. I had no symptons of anything, no water works problems, never had blood in urine. I had given up smoking 7 years earlier and now climb mountains as a hobby. So what was all this to do with me?

I was the last person called in and I was so confident everything was going to me alright. Afterall , my PSA was only 5.3 and the DRE was ok.

People say that you should take someone with you for support for such visit, but I was so confident I went on my own. I was on my own for the visit, but I had taken advice from people online and prepared two sets of questions. One for the positive result, one set for the negative result. The Clinical Nurse sat me down and made sure I was comfortable - that’s when I noticed the Macmillan Cancer book on the desk in her folder. She then , in a really nice and calm way told me my result was positive for Cancer, but she said , don't worry , it is really low risk and one they can treat really well . Stunned would be an understatement.

We went through all my questions but in summary it was:

Early Localised Cancer.
Out of 12 Cores on Biopsy, 6 on right, 6 on left
1 core on right was positive with 5% cancer - Adenocarcenoma
0 cores were positive on the left
Clinical stage not yet known
Gleeson 3+3=6

She was fabulous and advised me to get in touch with ProstrateCancerUk which i already had done. She said she was going on holiday for a week , however she was booking me in for an urgent MRI within the next 10 days. If I didn’t have an appointment whilst she was away i was to immediately contact her the Monday she was back. That would also be the same day I was back as I was having a week at Scout and Guide Camp doing voluntary work. She said that when the MRI was done, the clinical teams meet the Friday after to discuss the results and I would find out the week after.

We talked about possible treatment, she said that Shrewsbury offer Laparoscopic Radical Prostatectomy, Open Radical and Radiotherapy No mention was made of Active Surveillance. I needed to educate myself, but all this was going over my head – fact was I now had Cancer and we were now looking at MRI scans to see if it was spreading.

I asked for a copy of the pathology report so it can be sent to ProstateHealthUK, the company who had done my initial check. She said I could have this but probably when the MRI done and I go back in for the results.

The next week duly came at the end of that week on 27th July, I received a letter issued on 25th July booking me an appt for an MRI on 7th August 2012 at 2:15pm at Princes Royal Hospital , Telford for MRI Abdomen and MRI Pelvis. So much for an urgent MRI within 10 days!! Early indications here of the lack of efficiency of the NHS in the Shrewsbury and Telford NHS Trust.

5th July 2012 – my first invasive hospital treatment – Biopsy time !!

TRUS Biopsy performed at Royal Shrewsbury Hospital. This was an experience. There were six of us scheduled that morning and we were all give our own bed in an anti room. It was very factory like. Nurses going around each of us. Getting us to sign a form - I now know that was the form advising of side effects - hum - not very consultative. We were all given drugs. Then one at a time each of us was pushed into the treatment room and had the biopsy.

Whilst I was waiting I had my mobile phone playing me music and was tweeting away on the internet to keep my mind away from what was about to happen.

The biopsy wasn’t as bad as people online and youtube made out. The worst was the feeling when a large suppository was shoved up my rectum - this was an antibiotic. Also I am not that good at needles and an antibiotic was administered via an injection in the arm. Then the pain relief needle - this was the worst. Using the ultrasound guidance device this was a massive needle - I saw it unfortunately - and was injected in the gland through the rectum. Having said that, I was glad they gave this, as the needle biopsy then wasn't that bad. Counting the 12 clicks, I knew when it was all over.

Discharge summary given to me in a letter that I could copy and I dropped a copy at my local GP’s. Appointmentt given to me for results on 17th July with my clinical nurse. She is a lovely person who was calm and reassuring at the hospital. She gave me her business card and said I could phone her at anytime

27th June 2012 Letter preparing me for Biopsy at Royal Shrewsbury Hospital

Letter received, issued on 25th June, booking me in for a Prostrate Biopsy at 08:00 on 05/07/12 at the Treatment Centre in Royal Shrewsbury Hospital, Shropshire. I started to read lots of articles online, I registered with ProstrateCancerUK and started to read their forums and information. Also registered with Healthboards in the US http://www.healthboards.com/boards/cancer-prostate/ and got lots of advice on there.

I also went on youtube as saw loads of videos about the biopsy, a few made me really laugh. But quite a few were worrying talking about pain and after effects .. maybe I shouldn’t have had a look at them.

22nd June 2012 PSA Still high – time for the Biopsy

I received a letter received issued on 21st June saying my PSA is still higher than normal at 5.3 ug/L and that a prostrate biopsy was being arranged.

No other readings such as %free etc given.

It also didn’t give me an option not to have the biopsy, just that it was being arranged.

I do now know better and that I had a choice about having or not having this, but it hadn’t been explained to me. I also know now that if I had had the chance to exercise my Bupa private healthcare insurance then there were alternatives to the biopsy that could probably have saved me the problems associated with this invasive procedure.

You live and learn.

13th June to the Princess Royal Hospital , Telford I went.

I duly attended outpatients at the Princess Royal Hospital (Telford, Shropshire) , known as PRH.

I love the NHS hospitals, you go to one reception area, then they move you to another, then finally another before you are called in. Its like being at Disney, it gives you the illusion that things are happening but really they are just shuffling your around and preventing boredom. 

I saw a great chap, consultant, very pleasant. He went through the letter from the private company who had done the test. He explained that he would re do the tests, and DRE. He also said that due to my family history, father having had Prostate Cancer and my age, that if the PSA came back high he would send me for a Biopsy – no explanation as to this or the complications. I just accepted what he said, after all, he was the expert! He did the DRE , again , like the GP’s I just assumed the position and it was over in no time at all.

He passed me to a nurse who then did MRSA, Urine and Blood Tests. Hospital nurse joked about the MRSA as they had to do this to confirm they were not infecting me. Then it was time to go home.

6th June 2012 .. wow get ready to go to the hospital … that’s fast!

I received a letter that had been issued by the hospital on the 4th June booking me to see a consultant urologist on 13th June. This was pretty fast. I wasn't aware at the time but I am now. The UK Governments targets under NHS for cancer are that from the GP referral to treatment is set at 62 days. So the clock had started ticking.

31st May 2012 – Visiting the GP – double wammy .. or triple?

Went to doctors on 31st and gave her the letter. She didn't know what FreePSA or Free Total meant , she was only a young gP, but she was great. I told her what Dr Google said and she agreed. She then asked to do a DRE - she said the hospital expected here to do this. Lots of people bitch about this, but hey, it’s a normal thing for a guy once you start getting older, have had it done on Bupa health checks and its been ok.  Bit different here with a lady doctor but a doctor is a doctor so I respect that. Didn't mind so I assumed the position on the couch and it was over in a minute. She said I was normal. That gave me a sense of relief. She said she would refer me to the hospital and they would be in touch.

So one wammy was the DRE, second wammy was the referral to hospital, but the third … As a guy who avoids going to the doctors as I am always working away from home, I never worried about heart or other problems. Previous Bupa health checks had said my heart rate was slightly elevated but I had ignored these. So my surprise here was this young doctor took my BP and wasn’t happy. ( to cut a long story short on this one – she put me on a weeks monitoring as a result of which I am now on blood pressure tablets as we cant get the rate down any other way at the moment ) – so that was the third wammy.

29th May 2012 – The start of my education concerning PSA – Dr Google time

More days past, then on 29th May 2012 a letter dropped through the letterbox. (Interesting that the letter was dated 17^th May .. must have been stuck in someones outbox ).  It said that due to my family history and the result I needed to go see my GP with the results letter or they could alternatively arrange a private consultation with a specialist. PANIC now set in.

The letter said:
PSA 4.25 above expected level for my age group ( I am 52 years old )
Free PSA score = 0.35
Free:Total ratio = 8%

I didn’t understand any of this so I used the famous Dr Google. This said that in the UK a PSA of 3 or above and the GP had to refer the patient to a urologist at the hospital.

I rang my GP surgery, at first they didn’t have an appointment, but I read the letter to the girl over the phone and she gave me an appointment on 31st May.

15th May 2012 – Time to give a little blood for testing and donate some for medical research.

The day arrived and I went into the office and had the blood test. The nurse took the first sample and then prepared for the second – I had totally forgotten that I had volunteered to give some for research.. We had a chat as she took the second and said that I was one of the few who had volunteered to give extra blood for research. I was surprised at this, after all, once the needle is in there is no problem giving two vials of blood as opposed to one. Its not as if she had to put the needle in twice, its only done once. Donation over it was back to work.

Days past and I received no results. Spoke to a few of my friends and they said they had their results, negative all OK in days via email

Faced with Prostate Cancer - April 2012 The Journey Begins

April 2012 was the month that I made a decision that would change the rest of my life.

For better or worse, at the moment I don't know. I work for one of the largest IT companies in the world, HP, and I would say one of the best employers.

In 2011 they ran a campaign and screening for women employees for Breast Cancer, this year, 2012,  in the UK they had a Prostate Cancer test programme. I saw the advert at our head office and the emails; I also knew personally the chap who's story of survival was at the forefront of the campaign. What the hell, it was free, a simple blood test and I could also donate more blood for medical research. I therefore decided to have the test.

It was quite simple to sign up. An on line questionnaire was completed, standard stuff and I clicked submit and away it went. I didn't give a lot of the questions second thoughts - like, have you had cancer in your family .. my mother and sister had breast cancer and my father had prostate cancer. I received an email back scheduling me for a test at our Bracknell offices for the 15th May 2012.

On reflection, I should have read up a lot more about what I was doing here with this test, but hey, I am so glad that I took the test.