Saturday, 27 November 2010

A blissful feeling as I sit here at home on a Saturday afternoon, watching the football, thinking back to Tuesday morning as we set off on our journey to Addenbrookes. How could so much have changed in just 5 days! If any of these events seem a little muddled, it's because my head is still that way.

The journey down took about 5 hours and you can imagine what we talked about most of the time. We had no idea when we would be coming back, but Thursday at 5pm was the plan if all went well. We checked into the hotel and then went to look at a few of the places that had been offered for our stay during Jan/Feb when I have Radiotherapy. They were all very nice, but one in particular, a cottage on a   village green with a duck pond and stream flowing past, seemed idilic. After checking these places out we went back to the hotel, got changed and went for a lovely meal at the Oak Bistro. We jokingly referred to it as our 'last supper', but there was a chill to the thought! I had the artichoke soup followed by Swordfish, it was delicious washed down with a shared bottle of red. Couldn't overdo the alcohol before this event! "Would I like a dessert?" the waiter asked. The Blackberry and Apple Crumble with custard looked hot favourite, but no, hold on, the custard would break my 'dairy free diet'! Sod it, I would have this favourite of mine, after all, it could be my last!

We had a lovely evening, laughing and joking most of the time, well what else could we do? It was a bitterly cold night and as we drove back to the hotel, there was a feeling that the fun was over. I took some diazepam and Beverley some stuff to make her sleep, but there was probably nothing that was going to make it happen, and we had a very restless night.

The alarm went at 5am, this was it, reality kicked in. I could have nothing to eat or drink after midnight, so even a cup of tea was not available as a welcome to this day. I flushed down my antacid tablets which would stop the acid from my stomach burning my throat when they put me on a tilt during surgery. The funniest bit was yet to come though. I had to push two suppositories up my bum as far as I could. After 30 minutes I was assured that everything in my body would hit the floor, so to make sure I was hanging over a toilet bowl. I was provided with latex gloves (yes, for both hands!) so assumed that this would make it easy; not a chance! I couldn't get them past the entrance; there was simply no lubrication as I forced my finger further up, wondering if I had actually found the hole! Eventually, with a bit of spit, twisting and turning, I decided that I had gone as far as I was going to and gave up with the capsules barely inside.

We left the hotel with plenty of time to spare, arriving nearly half an hour early. 6.45am but the hospital was buzzing, staff and patients scurrying everywhere. By 7am I was called in and by 8am I had been introduced to my Anaesthetist, a lovely Aussie woman who really cheered us all up. She explained that her face would be the last I would see as I went to sleep, and the first to see when I woke up. She was right about the first thing, but I never remember seeing her again. She asked me to confirm my name, and I replied, "I refuse to reveal my identity". She smiled.....and I was gone.

Surgery was planned at about 2 to 3 hours, however I was over 6 hours in Theatre. Beverley was frantic with worry as all friends and relatives were trying to get news from her. It transpired that they had problems reattaching my bladder to my urethra, which will now mean my Catheter staying in an extra week. I woke up in the recovery room which I have very little memory of, other than how nice and kind everyone seemed to be. Back on the ward I have little memory of that night, again, other than how nice all the nurses were, and how all the patients were trying to help each other through what were uncertain times. A male Urology ward is not a place for the feint hearted. Nobody really cares about how they walk around or what is hanging out, it's just accepted! I can't speak highly enough about all the people I met in my 2 days at Addenbrookes, and I know that even though I am at home now, they will be still doing it all again for someone else right now.

If you are having, or know someone who is having this surgery shortly, I really don't mind if you contact me to speak in more detail about it. It may help to calm some of your fears, as the whole procedure and recovery are remarkable.

At 6pm on Thursday we headed up to Grantham, to stay the night as part of our two stage journey home. A good idea because doing the 250 mile in one go would have been impossible. A bit of a panic on the Thursday after arriving in Grantham, the collection bag started to look very red and was filling with a larger amount of blood. After phoning the hospital I was told to 'jig around a bit' and try and clear the blockage by conventional plumbing means. To our relief this worked and it was such a beautiful site to see the bag becoming clear again as urine flowed freely through.

The remainder of the trip back to Penrith was a breeze, with plenty of pillows around me, Beverley's (almost) gentle driving, and those lovely painkillers! Still not passed anything solid since Wednesday morning, but occasional gas and taking laxatives twice a day, should soon see results. Beverley still has to give me an injection of a anti-blood clotting agent daily, and I have to wear those lovely surgical stockings for a few weeks yet, but roll on 10th when the Catheter comes out. Wishing for a 'dry' xmas could be more relevant than a 'white' one!

What next?.....The Blog will continue, weekly for now as there is still a journey to be had and work to be done in helping others. I made it onto the front page of the local paper today, because of the ongoing enquiry by the NHS into my 4 month wait locally before any treatment started. It is important to follow this through because nobody should have to go through the stress that I have been forced through since June. Luckily, the blog itself provides a great record of evidence on all that has occurred since that time.

In 6 weeks time, I go back to Addenbrookes hoping that the good news will be that there has been no trace of a spread to my lymph nodes. If there has, then the treatment goes off in a different direction again, but thankfully, there are still treatment options. All being well, this spread will not have taken place, and I will just have radiotherapy on the 'prostate bed', the operation site, which will last 33 days. My PSA will be measured every 3 months for the rest of my life, and while PSA levels remain below 0.05, I will be assumed to be cancer free!

Beverley has just been fantastic throughout all of this. She couldn't have looked after me better in anyway. She was very loving and sympathetic when needed, but also knew when to give me a good bollocking and kick up the arse. Getting through this without her would have been a big ask; she is a very special person.

Today is a very good day...........

Monday, 22 November 2010

Oh OK maybe one last Blog before I travel tomorrow. I have been overwhelmed by the amount of people who have sent me their best wishes, both in person and by other media. I try and imagine what it would be like without all this support and it would feel like a very lonely place. I can't reply to everyone because there is still so much to do today. I've got a couple of big baggy trackie bottoms for comfortable wear after the operation, but just realised I haven't got any trainers to go with them. You wouldn't wear shoes would you? I've also got a meeting with the 'Risk Manager' of the NHS Trust locally at 4.30pm then a press phone call session after that.

I tried bidding on E Bay for the first time last night. I was allowed to bid in £10 amounts but is it all a fix? Thinking I had won the bidding and with two seconds to go, I was pipped by someone who bid some crazy number like £5.27. How is that possible; anyone know? There I was thinking I had got my 500mm lens for £530.00 :-(

Here's a few more photos ...............

All I did to get those seagulls was buy a bag of chips and Beverley just kept throwing them up in the air! The chips that is!!

You won't be able to reach me by phone between 7am Wednesday morning and 5pm Thursday night, but call Beverley for the latest news. I hope to be able to do a Blog by Friday so will catch you up on the news then. Best wishes to everyone..............

Friday, 19 November 2010

Yes OK, I said my next posting would be after the surgery on Wednesday but this has been an eventful day. I have had a visit from John who is the Chairman of the Cumbrian Prostate Cancer support group. Such a fantastically nice guy, it was a pleasure to meet someone else who lives with this and actively fights it in every way possible. We talked for ages about our individual circumstances and I am going to talk to the rest of the group when I am well enough.
John lived in South Africa most of his life and when I told him about my Wildlife & Media degree, he told me that his brother runs the Kafue Wildlife Park in Zambia, the second largest in the world; it's the size of Wales! I have put a link to it below, but I think I know where I am going for my University Expedition next year!

Oh and on that note...If you know anybody who has a 500mm telephoto adjustable lens with optical stabiliser, that would fit my Sony 350; and that they either don't want or can lend me for a year, please shout!

The story in the newspapers is on hold because the local health body have threatened legal action if they publish, saying that my account of events is not accurate. They are of course! But after numerous calls between the NHS, the press and the Cancer Support Charity, I have agreed a meeting with the NHS trust representatives in Penrith on Monday. The papers will hold off until after this meeting, but I really think it is in the public interest for this to go out, don't you? Diagnosed with aggressive prostate cancer and 5 months later having had no treatment is not acceptable to me. It doesn't help me now, but it might save the skin of someone in the future.

Claire, my Urology Nurse from Addenbrookes called today and I had a list of questions for her.

I arrive at 7a.m. and if I am first down it will be at 8a.m. No hanging around there! Surgery will be about 2-3 hours. If I am second down it will be early afternoon, but regardless of when, I won't remember much of the rest of the day, she assured me! I will be discharged around 5p.m. the day after, so might stay locally that night. I go back ten days later for the removal of the catheter, which she also assured me that she is very good at, having done it countless times...Ouch! 6 weeks later I go back for the meeting where they tell me the histology news. Has it spread to the lymph nodes, the seminal vessels etc. What is the final Gleason score; though 8 is bad enough right now, it's better than 9 or 10. First PSA test is 3 months after the operation and that needs to come out at less than 0.05 if there are no cancer cells still growing. Radiotherapy will follow on from that, so might not be until mid January ish! Also I will get no pre-med and not allowed my phone on the!

So that's it for now, and I hope to catch you up on the latest as soon as I possibly can........

Thursday, 18 November 2010

AT LAST! Wednesday 24th November is my date! I got the news on Wednesday evening by phone from the urology Nurse at Addenbrookes. For the first hour I was scared as hell, but it has sunk in now. I have to be at the hospital at 7 a.m. However I have to be up at 5 a.m. to stick 2 suppositories up my bum, which will clean me out, I am assured! I also take something to neutralise the acid in my stomach because for much of the two hour surgery, my head will be lower down than my stomach! I have also got some diazepam to keep me chilled before the event.

The success of the operation will be measured by the skill of the surgeon on the day and the result of the pathology a few weeks later. How far it has spread will make a big difference. My MRI scan showed a small spread onto the prostate surface, but my bone scan was clear. They are removing some lymph nodes in the groin area and if they show no cancer it will be an absolute bonus.

I remember the quote I found some months ago on line, and it reassures me now...

'Prostate Cancer' is not a sudden visit from the Grim Reaper, more of a long slow waltz with the Angel Of Death!

I have just sent an email to my fellow students who are a fantastic bunch of people, but I wanted them to know first hand what was going on. I am determined to be there when they all graduate in 3 years time, and I will be.

Had a great weekend, last week in Whitby, the best fish and chips I have ever had! Beverley will never forget the seagull who just dived into her fish and chip packet and made off with the fish. I saw it as a skilled and well planned stealth attack, by a simple bird on a well evolved human; but she worded it differently!

We have been experimenting with Soy milk for the last few days as I am now 'dairy free'. There are many brands and unlike milk, taste very different from each other. Tesco's own bran of unsweetened is favourite so far. It not only tastes OK in tea and coffee, but it doesn't leave that brown stain on the cup and on your teeth as you drink. I've had my last milk but it's not that easy. Milk is hidden in so many things and it's not easy to avoid. Flora contains milk, but I didn't know that until yesterday. We have tried Soya cheese but it's not cheese as you know it! It's a lifestyle change, it won't be easy and I am so grateful to Beverley for buying into this, because unlike me, she has a choice.

Thank you so much to all the people who are getting involved with the Prostate Cancer Charity and growing a moustache for 'Movember'. David, Tom, Richard, Sasha (not growing :-) and the many others that I just can't remember the names of, well done all of you.

 Let's have the Story so far, on the medical side for anyone looking in for the first time.

May 18th         After rectal examination by Dr Lukose and PSA 4.2 referred to Consultant, Mr Bashir.

May 28th         Saw Mr Bashir, had biopsy same day.

June 18th         Saw Mr Bashir confirmed Prostate Cancer
                        Gleason 7 (4+3) with one sample at grade 5 (highest).

July 5th           Had MRI …told result available in 10 days!!
                        Hospital ‘forgot’ to give me the result.
                        Repeated phone calls to all contact numbers ignored.
                        E Mails also ignored. Complained to PALS, no reply

Aug 6th            Frantic with worry, obtained result over the phone
via McMillan Nurse, from Urology Nurse. Both of who were very helpful.
                        Tumors confined to prostate capsule, no other detail.

Aug 12th         Had bone scan. Very worried by comments made during this by Radiologist.

Aug 20th         Consultants appointment after MDT meeting.
My notes were missing. No details from MRI as to position or size of tumors. Consultant unavailable. Brief details on A4 sheet given by Doctor. Bone scan clear. Nobody available who was on the MDT.
                        Letter being sent to Newcastle Freemans to request
                        seeing Surgeon and Oncologist to discuss options.

Also told that the main guy at Newcastle who did this surgery had moved to Dublin!

Aug 24th      Mel, the Macmillan Nurse called and gave me my first detailed report on my MDT meeting and MRI scan done on 5th July.

Aug 25th        Saw Dr Lewis, gave her a letter on what had happened to me so far, asked for a referral to Addenbrookes

Sep 7th           Saw Dr Sidek, she explained radiotherapy, I decided against it. Dr Sidek couldn’t show me a clear MRI scan as the equipment seemed faulty. Reception in Radiotherapy were very unfriendly and inattentive.

Sep 8th       Saw Dr Lewis again to ask for the referral to go ahead as I had decided against radiotherapy.

Oct 11th          5 weeks after asking (Yes 5), received referral to Addenbrookes .  Appt for Nov 1st.

Oct 25th          MDT meeting at Addenbrookes.

Nov 1st           Appt at Addenbrookes 9.30 to 3.30pm.
                Told I would be given a date for surgery before month end. A very positive experience, seemed a well run and very organized hospital.

Nov 17th         Date for surgery given as 24th November.

I took this at Whitby last weekend. It was very cold but this lad was having too much fun to notice!

When he came ashore I showed him the photos and he asked if I could send him them. It gave me an idea for some tax free income in the future. Just need to get some cards made up with my e mail address on and go out shooting people having fun!

This little chap is called a 'Turnstone'. I only know that because there's a really nice young lad at Uni called Ashley who knows just about everything to do with wild birds. Well worth knowing on this course.

To see more of my photos just follow this link.....

The blog has just passed the 8,000 hits mark today!!!!!

My next post will hopefully be next weekend now, when if all goes to plan, I will be recovering at home feeling a bit sore but glad to have that bit out of the way. If I can't write it then Beverley may step in as a guest Blogger to keep you updated. Go easy on her :-)

A message to my children.......

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

Steve Jobs (founder of Apple)   

Friday, 12 November 2010

It's only Wednesday just now, but I have to start writing this before my head explodes! I still have no appointment date for surgery, but it's out there creeping towards me. The other guy who I met at Addenbrookes, Andrew, was due to have surgery on 16th, but they have put him back to the 30th now.

I have written letters to both local papers this week because regardless, I want to try and make a difference to any man in Cumbria, who is ever given the same news that I had back in June. The more contact I have with Addenbrookes and talking to other Prostate Cancer patients around the country, the more I realise just how 'third world' our service is at Carlisle.

Knowing I would be having radiotherapy for about six weeks in January/February, I wrote a letter to the Cambridge News last week, explaining my circumstances and the impending cost of a hotel for 6 weeks. I was absolutely stunned by the response! I estimate about 20 to 25 people contacted me. One lady just phoned to wish me well with my treatment; how nice. Others offered me the use of rooms in their houses, holiday cottages and annexes no longer needed. Some families offered to put us up free for the complete duration and I am still trying to decide what to do, knowing I have to reply to everyone. This morning, the lady who phoned to wish me well, phoned back to ask if I had found somewhere to stay yet, because she was concerned about me! A lovely man called Peter called, he was over 80 and his wife had died recently. He said that he had a spare bedroom and I was welcome to have it for as long as I wanted. He didn't want anything for it, but he warned me that he liked the football on a lot and he was a Spurs fan! I must write to the Cambridge News and let them know just what fantastic, well meaning people they have in their area.

I am well up to date on my work at University and hope that much of my surgery recovery time will be absorbed by the Christmas break. My course leader Fiona has been fantastic, assuring me that whatever it takes, she will help me get through first year. My mate Paul helps to update me on anything I miss, and ongoing, that might be rather a lot! But there's so much reading to do and work that can be done via the internet, that it shouldn't be too difficult to pull this off. The marks for first year do not count towards the final grade, so a 'pass' would be good enough, but sorry, not for me!

Happy Birthday to my daughter Luci who became middle aged on Wednesday. She's becoming a great photographer and has put out some really unique work. Proud of you Lucienne xxx. You know, you're over half my age now!

Breast Cancer or Prostate you have to check out Jane Plant. She is a professor and several years ago had to have one breast removed through cancer, but by doing some research herself, she came up with a solution which cured her. Her theories are very sound, so girls and boys, please follow this link and take ten minutes to absorb what she is all about. Chantal, Lucienne, Sasha, Maria & Sofia take note!

Another link I am going to give you is my Cumbria University photography Blog which I have just started. There's photos from all the other year one students on it too.............

I handed in assignment one today, my first assignment of my 3 year degree!!! Here are a few shots that I took in the past month. Sorry about the last one, but it was that time of year!

In Ecology this week we had to identify each of 18 different species of Oak tree. I kid you not. Yes, like you I knew there was one type and had learnt earlier in the term that there was at least one other. But now that I know there are so many others, I am really not sure what to do with this information.

Today I switched to soya milk, have you ever tried it? I did years ago and thought Yuuuk! But when you are told that your particular type of cancer thrives on dairy produce, soya suddenly takes on a whole new flavour. I'm also down to 14 stone 7 pound (sorry, metric hasn't touched this guy yet!), that's the lightest I have been for decades. I put it down to what I eat now rather than anything sinister. Mentally, I feel that I am coping remarkably well, and I could put this down to many things but really it's a combination of support from some wonderful people close to me and the never ending amazement of the support from complete strangers.

I am being featured by two local newspapers next week, regarding the struggle I have had with the hospital system up here since I was diagnosed back in June. When the photographer showed up this morning, he asked if he could take a picture of me holding any correspondence from the NHS in Cumbria. Of course that wasn't possible, because they have never replied to any email or letter that I have ever sent. So he had to make do with a copy of Jane Plant's book, which was broadly titled, 'PROSTATE CANCER', making a good prop. He told me not to smile, after all, this was cancer that we were talking about and the readers wouldn't expect someone to look overly happy. I tried my best to grimace and be sincere at the same time!

I see my doctor at 4.30pm today, to get set up for what will be a bit of a struggle when I come out of hospital. Hopefully, by Christmas I will be through the worse and can look forward to starting radiotherapy shortly afterwards. I bought my Christmas cards today, will have to send those out next week or they may never leave the house. The cards are all the same; I love that. I remember the days when I would sit for hours choosing the appropriate card for that particular individual. Baby Jesus or the Holy Mother had to feature for my Catholic relatives, anything less would cut me out of the prayer list and you would have to light more candles than you could afford to get back in. Then a few joke cards for some of my more sinister friends, before speeding through a huge pile, trying to make up something different to say each time, finally ending up with just one card, and two people left on my list! Two people who I couldn't even remember who I had seen last, it was so long ago, but I had to make a choice of who to leave out.

This week, in return for all the research done by Sasha on cancer related stuff, she has asked me to research Buddhism for her, so that she can be less afraid of death. She's not so afraid of her death or mine anytime soon, but my eventual death when I  am nearer 100, she assures me. Where do I start?

Thanks Chantal for all that stuff you sent through in your busy week last week, hopefully you'll get a bit of a rest this weekend. Why do the government make it so difficult when you have cancer, to find out what you are entitled to? Well, I guess I know!

Happy Birthday also to my good mate Paul at Uni who's photography is getting as good as mine!

Not sure when the next posting will be, just waiting for some news, but I would be very surprised if I still had no dates by this time next week; or would I :-) Have a great week everyone.....

Mmmm just had soya milk in coffee, not as bad as in tea :-)

Saturday, 6 November 2010

Well I have no surgery date to report, but Addenbrookes have been in touch by e mail, phone and letter all in just six days! I am trying to get the ball rolling on some changes at our local hospital in Carlisle, so I have written the following letter to the local newspaper. We deserve better than what we have in Cumbria, and it's not going to change unless we change it.

Dear Editor........

'It came as no surprise to me, when reading about the recent 'Cancer Breast Screening' fiasco in Carlisle, where many women had been wrongly diagnosed. I was diagnosed with Prostate Cancer in June this year at Carlisle Infirmary. It came as a great shock, but I was reassured that because it was Cancer, there were so many things being put in place to help me, and that I had nothing to worry about. How further from the truth this turned out to be. I became part of a process that didn't seem to have anyone actually leading it. First someone forgot to give me my MRI results! I thought nothing of it, mistakes happen! Then, when I went to hear the outcome of my MDT meeting, (which is the meeting where your case is discussed by a team of experts), not only were my notes and scans missing, nobody who was at the meeting was available to talk to me. When I went to see the Oncologist, she didn't seem sure how to operate the machine which showed my MRI scan and the guy who did my bone scan left me worried to death by his whole attitude. Because the grade of cancer was high, and I was extremely worried about lack of progress, I first started to send e mails to various departments to try and get information. Having got no reply from anyone I tried letters which got the same negative results. I wrote a very polite reply to my consultant to try and find out where my case was up to and why nobody was replying to me. The next thing I knew, without telling me, he transferred my case to another consultant! After that, there was only one thing left to do, I wrote to PALS (Patient Advice & Liaison Services). They have one in every hospital to help patients who have problems with the system. They also, and incredibly, just did not reply! I could not believe that! Phone calls to anywhere in the hospital were always met by voice mail and I was now starting to feel as if I was in a very desperate situation.
I was lucky, because I had read in a National Newspaper that you can ask to be treated at a hospital anywhere in the UK. I had also researched the team at Addenbrookes near Cambridge, who are world renowned for their research and treatment of Prostate Cancer. Having asked for a referral there, I went down last week and what a difference. I felt for the first time since being diagnosed that someone actually cared about me. I spent the whole day there, meeting the consultant and having the pre surgery check over. Since coming home, I have emailed them twice and received a response within an hour. Every time I have phoned, a person has answered my call. They wrote to me within days giving me a run down of exactly what was going to happen next. Perhaps the most alarming part was that when the team at Addenbrookes looked at my MRI scan and biopsy slides, taken in Carlisle, they did not agree with the diagnosis. Carlisle had said the Cancer was contained when it wasn't, and they said it was a moderate grade when it turned out to be a high grade 8. They are all decent well meaning people working in the Carlisle Unit but they need to visit Addenbrookes to see how different the 'patient experience' is. After being referred to Addenbrookes, and about 3 months after writing to PALS in Carlisle, PALS called me last week to ask me if I was 'all sorted now'! If you get cancer and you live in Cumbria, manage your own case, because nobody else is going to!'

Surgery has been promised before the month end and I am happy with that. It will also mean having radiotherapy, probably in January for 33 consecutive days. I could have this in Carlisle, but seriously, would you? It will mean living down near Cambridge for that time but when it is your life, you just can't take chances, can you? 

My daughter Sasha is 29 today....Happy Birthday my girl, and thanks for all your help and support over the last few months, you have been an absolute gem of a person. Take a blow and make a wish!

Oh I nearly forgot.....I passed my minibus test on Wednesday; people's lives are in my hands!

Tuesday, 2 November 2010

We are lucky to live in Cumbria, because it is without a shadow of a doubt, the most beautiful County in England. However, after yesterdays experience, if you get Cancer, I still stand by what I have said before. "You should hope you are not living in Cumbria". 

We arrived at Addenbrookes, near Cambridge, in plenty of time. After all, the day before, we had done a dry run, just to check that there were no unforeseen obstacles. We even allowed time to change a wheel on the car if we were unlucky! Why all the panic? Well I was told to arrive carrying a sample of my early morning urine, which wasn't a problem, but I also had to arrive with a full bladder! It said in the instructions that it was to be, 'comfortably full'. Well I've always been the same, I either don't need a toilet or I am bursting. The journey seemed to take no time at all, and as I sipped from my litre bottle of water, I was trying to estimate the distance from the hospital against the feeling in my bladder, all the time wondering if I might be sipping just a bit fast. The traffic was very light, there were no holdups and we arrived at or destination nearly an hour sooner than we had expected. As I walked the endless corridors towards area 4a, my comfortable bladder was starting to moan a little. When I got to the desk, it was screaming! I handed in my appointment card and early morning sample, then explained that I was ready for my 'urine speed flow test', and that if this couldn't take place within the next two minutes, she was going to get very wet! They popped me into a room around the corner, where my sighs of relief could be heard floating down the corridor. The graph produced seemed to be a vision of beauty, as it impressed the nurse immensely.

We didn't know at this time, 8.30 a.m., that we would be leaving the hospital 7 hours later!

We first saw the consultant who was a really nice guy, and he took the time to explain everything in great detail. He explained that even though they had taken note of the Carlisle Hospitals diagnosis, their own team had looked at my MRI scan and all the biopsy samples, and had arrived at a different conclusion. My Gleason score of 7, which was in the moderate range had now become an 8, which is in the high risk category. Worse still, where I had been told that the cancer had been contained within the prostate capsule, it had actually broken through slightly.

I told him of my journey and experience whilst going through the system in Carlisle. Everything from them forgetting to give me my MRI results through to my notes going missing after the MDT meeting; from having no calls, letter or e mails returned, through to the Oncologist not being sure how to work the monitor when showing me my MRI scan. He was very professional in not criticising any of it, but his face painted a thousand words. Very rightly, he told me to avoid looking back and dwelling on what has gone, but to look at what we could achieve now. YES, I will do this. BUT, if you are someone who has just been told that you have Prostate Cancer, and you are attending the Carlisle Infirmary, you deserve better!

Don't get me wrong, they are all lovely well meaning people and they all want to do the best by you with every bone in their bodies. They are just drowning and don't have the quality people or the facilities to cope. My Urology Nurse, Jill at Carlisle, is not just the Urology Nurse. She is a secretary, councillor, cleaner, tea maker and multi tasked nurse. I saw about 12 different people at Addenbrookes yesterday who all did just a small part of Jill's job, but did it to perfection, because they simply had the time to. Jill is the most lovely well meaning person you could ever meet, but the whole system up here is letting her down; she needs help!

After my consultant had helped me to decide on the treatment, he then explained what would happen next, including what would happen that day. He wished me well, grabbed my arm, looked me straight in the eye and said, "Don't worry, you will be OK, we will look after you". Even that at Carlisle would have made such a difference. When I wrote to my consultant because things appeared to be going wrong, he responded by striking me from his list without even replying.

There is no certain order to what happened next as I can't remember. We sat down outside in the corridor, where dozens of medical and admin staff were whizzing around, all seemingly choreographed and knowing exactly what their roll in the play was. We met a lovely couple who were sat next to us, the chap being the same age as me and almost identical symptoms and treatment plan. As we moved around the hospital, we seemed to keep catching up and talking more. We exchanged contact details and I emailed them this morning. He is a Chaplain in the RAF, such nice people, I hope all goes well for them also.

I had blood taken by a research team who explained that they were taking samples to try and detect if there were any identifiable genetic markers relating to Prostate Cancer. I also had blood taken to check for many other things, because they put it in about six different tubes. I gave urine 3 times and had MRSA swabs from my nose throat and groin. I had an ECG, losing some chest hair as the nurse quipped, "take a deep breath" whilst yanking the sticky tape from my torso, then smiling and saying, "sorry", with some pleasure on her face. My blood pressure was all over the place, different every time!

I was weighed, had my height measured, my body temperature taken from my ear; yes, my ear! I had a bladder scan, answered several detailed questionaries and probably other things that I have since forgotten. When I left that hospital I couldn't think of anything they hadn't covered. They even apologised once when I had waited 40 minutes. I was delighted as I had waited 4 times that at Carlisle on occasion, but never minding because I always think that there could be someone in greater need, just ahead of me.

So what next.........

In the next couple of days I will get a phone call, giving me my operation date. I have already been given tablets and suppositories which have to be taken in the lead up time. They have explained the importance of doing my 'pelvic floor exercises' which will help me to regain continence quicker. I will be in hospital for 2 or 3 days and can then return home. I have some injections to administer myself, though Beverley has kindly offered to do this. I have to return 2 weeks later for the removal of the catheter. Ouch! After that, and I am not sure when, I will have radiotherapy. If I am to have this at Addenbrookes, I will need to live near Cambridge for about 6 weeks, as it is a daily thing. I would prefer the continuation of the treatment with the same team of people, so whatever it takes I have to make this happen. Living in a hotel, b&b, renting short term, living in my car :-) I simply don't know at this stage, but must research it fairly quickly now.

Beverley was a great support yesterday and probably remembers more that was said than I do. Sasha was about all day and that really helped, as did calls from Chantal and Lucienne on the way back up the road. Great to hear from Paul and Wendy also and so many other texts, a BIG THANK YOU.

WOW! I left a message for my Urology Nurse Claire an hour ago, and she has just returned the call. My radiotherapy will start about 4 to 6 weeks after surgery but I will be put on hormone tablets to suppress any remaining cancer before then. So that will be around eary January I guess. The Radiotherapy will last about 4 weeks, so I only need to stay around Cambridge for a month; that's great!

Oh I nearly forgot! We went to Newmarket races on Saturday and I didn't get one winner! Beverley backed two, both at very good odds; one because she liked the name and the other because of the jockeys shirt colour, I think!

Next posting will be on Sunday when I hope to have my surgery date. Uni is hanging in the balance now and a 'year out' seems more likely, but I'll hang in there for a while yet.

I have just noticed No.27 has joined the Blogg as a follower. It is the person who I met at Addenbrookes yesterday and I still don't know his name. (sorry) Will introduce him properly on Sunday. Great to have you on board my friend.