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.

4 comments:

  1. just in case you missed it the first time big bruv you can stay at mine in suffolk FOC for as long as it takes,no need to stay in you car(thought it hadnt got an MOT anyway ?) all the best

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  2. Thanks mate, appreciate that :-)

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  3. Andrew & Liz Turner02 November, 2010

    Hi Daniel - not sure if I am No 27 - but I'm here now! I'm relieved to receive emails from friends who've read my latest - to be told about 70 year olds who are 20 years on from their ops!

    I really hope you get a date soon - I feel for you as they've given me mine...

    Andrew & Liz Turner

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  4. You're in good hands with Claire and the team at Addenbrookes, good luck.

    DEB

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