OK so this is all new to me. I was only diagnosed at the end of April 2013 just 2 days after my 56th birthday. I did feel like 56 going on 18, and still do!
Probably best to go back to the start of all this in February 2013. Just once and only once I spotted my semen was a little pinkish. "OMG I've got cancer" was my first reaction, "I'll go and bury my head in the sand and hope it goes away!" After pondering for a day I did hit the computer and booked to see my GP. Then I rang the GP to cancel and told his receptionist that I was too busy! It was at this point that "the Boss" aka my wife, Jill, found out and went ballistic! Jill has had breast cancer in 2009 and then a small focus of tissue found in her uterus in 2012 so she's been there, done that, bought the t-shirt and run the "Race for Life" 3 times! After she swore at me a lot for being an idiot, she sat next to me as I made another appointment with my GP online.
Now I've been a patient of my GP since he joined the practice 28 years ago and Mark, for that is his name, has seen everything our family can throw at the NHS from minor illnesses right through to cancer, so I know him like a friend! So he put on his glove and told me to turn on my left side. "Yes" he said "I can feel something, like a nodule." And lo "Noddy the Nodule" was born! "I think I need to refer you to the Countess" said he. No, she isn't the local madam, the Countess is The Countess of Chester Hospital affectionately known as COCH - you couldn't make this stuff up! "Oh, and we'll arrange for some blood tests to be done including a PSA." Now to me anything with PS in it sounded like a Civil Servant but I went along anyway the following week. A week later my PSA came back as 2.3 and we all breathed a collective sigh of relief! But we all decided to proceed along the lines of "better safe than sorry!"
So in March my consultant at the COCH put on another glove just to confirm Noddy's existence and marked me down for a MRI, flexible cystoscopy into the bladder and biopsies via "the back passage." Now we live in a terrace house so anyone coming in via the rear entry is likely to be clobbered with a cricket bat! So like the majority of men I guess, I viewed this latter procedure with great trepidation! The MRI was unusual to say the least and the jolting made me giggle like a silly girl for a while, but otherwise loud but uneventful! The flexible cystoscopy made my eyes water but proved clear - hooray! When I saw my consultant again Noddy turned up as am image that I could clearly see - so it wasn't Bombay Mix after all as one of my golfing mates had predicted! And so to the biopsies. I was the (very) youngest of 3, stripped down and all embarrassed! But the staff at the Urology Dept of the COCH were absolutely brilliant. Going through the procedure as a "run through" certainly helped me to relax. And, well it is uncomfortable, it is unusual, but painful it really was not. The jolt of the biopsy gun was the main sensation and after 5 or 6 minutes it was over! You are then kept in until you pee to see if it was clear of blood - I could no more pee to order then run a marathon. A hour and half later after 2 jugs of water and copious amounts of coffee nature finally took it's course, and, no blood so off I went probably suffering from an OD of H2O or caffeine! A couple of bloody poos over the next 24 hours and then back to normal!
And so to the last day of April 2013. This time, accompanied by Jill, to see the consultant back at the COCH. The presence of the "Specialist Nurse" was a bit of a give away particularly as Jill is one herself at the COCH but in a different department! The consultant confirmed the presence of cancer in just 1 of the 14 biopsies taken, but was a 7a on the Gleason scale (4+3) and a T2 (see definitions on this site). A whole host of options were sent down like an over from Curtley Ambrose including "active surveillance" right through to radical surgery! At the end of it I was a little non-plussed! And actually quite glad to go out and take stock with Karen, the Specialist Nurse. Anyway after going over it with her again, I realised that my case was being discussed at the forthcoming Local MDT (Multi Disciplinary Team) and then possibly the Regional MDT at Arrowe Park Hospital on the Wirral. But nothing was or needed to be finalised for (possibly) weeks or even months. So there we are! Much research to do over the coming weeks. So watch this space for updates!
What I have learnt as "living with someone living with cancer" is to stay absolutely positive and hence the tone of my blog, which I understand may not be to everybody's taste.
Early Update Alert!!
Well things really have moved on apace in my first week of diagnosis. But I just want to go back a few weeks to the biopsy, and I have to relate this too you. Just prior to the biopsies, the senior nurse on duty, whom we shall call Andy for that is his name, came to fill my arm full of antibiotics. The reason he said was that "we are working in a dirty environment!" I looked around and thought to myself, "Funny, it looks really clean on this ward!" It was only 30 minutes later that I came to understand what Andy REALLY meant!!
But anyway, the MDT met the day after my diagnosis and according to Karen, my specialist nurse, the "panel" were "split". Although I didn't ask I understood this to be between "active surveillance" and "active treatment". The regional MDT were meeting in 2 days time to discuss further (see below).
In between times I got a very moving telephone call from my GP, Mark. After what we'd already been through with Jill he was, as they say, "Gutted for me" but "we'd caught whatever it was early and I should remain positive". By this time, I'd kinda already come down on the side of the brachytherapy as the way forward for me above all other treatments as it seemed most appropriate to my case. Mark said that this could be indeed a "good choice", but at this stage leave both my options and locations open until I'd seen everybody, and talked to everybody too! I made an appointment to see him in 2 weeks on his return from hols.
The following day I got another call from Karen - the RMDT had met and decided that, indeed, "active treatment" would be the best way forward for me because of my age. I would get a call from Clatterbridge or Arrow Park to discuss with an oncologist and a surgeon. "Good" I thought! Just 30 minutes later the Oncology Dept from Clatterbridge were on offering an appointment in 5 days time. I was speechless! The NHS has many detractors but from diagnosis to specialist appointment in EIGHT days! Now that's what I call a Health Service! Brilliant!
Good job Jill and I were already booked to go away to South Wales for the weekend with 2 of our very best friends. Glorious weather for a Bank Holiday and glorious food too!
So next update should be pretty soon!
Keep positive and upbeat and always look forward not back!
Well a lot of water has passed under the bridge since my last update in May. I got the appointment at Clatterbridge but after a long and ultimately fruitless discussion with the Consultant he thought it inappropriate for me to have the therapy of my choice - brachytherapy. To say that I was both gutted and incandescent with rage is an understatement! He was all for me having a radical surgery using their new, and relatively unused, robot. I thought that I'd rather have the robot that had done 000s of ops not one that had just done a dozen if I was going down that route. I have to say the whole experience there left me deflated.
We went away and hit the web! Over the weekend we continued our research and decided we'd go for a second opinion. Manchester is only 40-odd miles away so that brought the world famous Christie Hospital into play. A phone call to the Macmillan nurse there resulted in a call to the department - I told them of my predicament and was advised to ask for a second opinion via my GP. Mark was great, again!! No sooner had I told him, a letter was winging its way to Manchester, and only a few days later I received a call asking me to go for an appointment. Within a week I was there in the waiting area, and what a difference! A hospital that actually looked and sounded as if they cared! I wasn't actually expecting to see the main man, but lo there he was! I knew instinctively this was the right place for me especially as he sat on the bin in the consulting room so as Jill and I could have the bed and seat!! He really listened and told me that I appeared to be an excellent candidate for brachytherapy and in their system I arrived! I spoke with with another member of his team and 2 appointments were set up for me then and there. The first was to take place in July and then the main one, owing to our holidays, in early September. Oh and my PSA count had gone DOWN to 1.6!!
So in July I was knocked out (for the first time in 28 years!) for the prostate volume etc and that confirmed that I was "go" for brachytherapy. So here we are - the op is this coming Friday (6th Sept) so wish me luck and I'll see you all on the other side! Oh, and by-the-way, Jill has just received news that her latest scan was clear!
So here we are on the other side! Procedure went like clockwork and once again patient centric Christies didn't fail me! There were just 2 of us on the list and I was first up. I was probably out for nearly 2 hours and then back in the small ward a little sore around the undercarriage but other than that ok. It was a while before I could pee into the pot but when I did the nurse bought in a Cold War geiger counter to check I hadn't passed any of the seeds. 3 hours later I was on my way home and that's when the fun started! Actually just before we left I was getting the urge to pee but very little was happening. The journey home was a nightmare! Almost as I got into the car the pain started and I also got the sensation of dribbling. We had to stop once but I got no relief so to speak! Got home, went straight to bed and then endured the worst 24 hours of my life.
Through the night I was up every 20 minutes forcing out a few drops and still in pain. I knew what was happening but tried to work through it. I was pretty close to exhaustion by morning and things got even worse through the day. My poor wife even had to go out and buy man pads - how embarrassing! By tea time I'd had enough so phoned NHS Direct who put me through to a GP who told me to go to casualty.
Well to cut a long story short I was catheterised and instant relief - out flowed a litre like Niagara Falls! No more pain either. Back home to bed and a great nights sleep. This morning spoke with Christies and they are arranging a nurse to come visit and fit another type of catheter without a bag. It'll be in for about 4 weeks so watch for my updates!
Experience not put me off Brachytherapy, know it's still the best for me! This is just a minor blip!
So its exactly four weeks since my implant. The district nurse came to fit just a tap on my catheter so the bag was history. Usual nags with a catheter: inconvenience more than anything else but it was a long four weeks all the same! During that time I did get a urine infection (minor) easily treated with antibiotics, but I did manage to travel to Belgium and France by plane for a WW1 Battlefield Tour (for that's what I do for a living!!). Although sitting around in cars and on planes created discomfort with the catheter fortunately journey times were short!
So that takes us to last week and a trip to Christies. First of all the catheter came out - relief! And then my CT scan showed that my implant was, and I quote, "textbook!" Double relief! But the old retention probs reared up again, so it was agreed that I should self-catheterise until my brain decided to tell my bladder to start working again properly! Apparently "its all in my head!" This could take 1 week, 1 month, 6 months, who knows? Anyway the old s-c is not as bad as it sounds now I'm doing it myself and the bonus is that I can sleep on my front for the first time in 4 weeks - deep joy! Fortunately my lifestyle and work patterns can fit around my urges "to go", so there is no inconvenience there. This weekend I'm off to a Uni reunion to see people I've not seen in 35 years so that should be fun talking about my predicament!
Stay strong and we can all beat this menace together!
Christmas Update! So, no new side effects to report and the s-c is going fine. I now get the catheters delivered direct to the door from the suppliers - much quicker and simpler than going through my GP! No erection or ejaculation probs either!!!! Since October I've done 2 more Battlefield Trips without any alarms or mishaps. Quick visit to Christies and the Consultant did say that the retention could last up to 2 years, but hopefully not! Next visit not until beginning of February so they are happy with my progess. Looking forward to Christmas and a positive resolution in the New Year!
Merry Christmas and a Healthy New Year!
Where were we? Oh yes. I'm still self-catheterising but I do think that the urge to pass naturally is returning - here's hoping. But I've had two great bits of, related, news. My PSA is down to 0.38 (as close to ZERO as you can get!), and as a result Christies do not need to see me until July (it would have been August but it seems everyone is on holidays that month!!!). Brachytherapy seems to be doing the trick for me, so it can for you too!
STAY STRONG AND TOGETHER WE CAN BEAT PROSTATE CANCER!!
Just got back from Christies in Manchester and my PSA is now DOWN to 0.16, so something is working very well!! Still having to sc but natural urges are coming back and it seems only a matter of time when I'll be able to pee like a normal bloke! ED still happening though so GP has put me on Cialis to help!! Can't even remember having cancer now my head is telling me. Next visit to Christies in January 2015 so they are very happy with my progress too! STAY STRONG!!
Well it's 7 months since my last post and the time has flown by! Was at Christies last Friday (6/2/15) for a routine follow-up. My PSA has reduced AGAIN!!! to 0.14 which is the best news of all!! Sadly the old urine retention problem is STILL with me, but I've recently been prescribed mirabegron to try and prolong the periods between the need to pee. Seems to be working! Recent clinical trials with it and low-dose Cialis taken together seem to suggest that this may alleviate symptoms of UR too, but I'm waiting for my local Urology dept to get back to me on that one! Watch this space! ER has reared it's ugly head so I'm actually on a higher-dose of Cialis to counter that one!!
Generally all is well with the both of us (Jill is now 6 years from diagnosis herself) and we're looking forward to celebrating 25 years of married bliss(!!!!) with our 3 week trip to South Africa next month!
Stay strong people!!
Hi folks! Long time no report - my sincere apologies! Those of you that have been following my experiences will know that this time last year Jill and I were about to embark on our trip to South Africa. Truly amazing - every sense was clobbered from the moment we landed in Cape Town to the moment we left Jo'burg! If you've never been , then GO!! An amazing country. Makes you feel great to be alive!! So much so that in exactly 12 months time we are off there again for my 60th as we have "unfinished business". Can't wait !! Our youngest, Charlotte, spent 6 months volunteering in Fiji but missed the cyclone, only to find that the two villages she called home had been flattened. Our eldest, Maddy, is now more settled than ever both at work and in her new relationship. Finally, Jill is now 7 years clear!! So all is good in the Ellis household!
And that includes me! Returned to Christies last September following my PSA of 0.11, to be told that they didn't need to see me for 12 months now and not 6 had been the case previously! Result! On the downside, I now hold the Christies record for the LONGEST period of s-c in the history of their department. However, it is still only an lifestyle inconvenience (excuse the pun) and I am going "normally" more often, if not full bladder evacuations! So one day, you never know!!
There are worse things out there - a good friend and neighbour, big triathlete, fit as a fiddle, suffered a stroke at 60. And I think s-c is a "pain in the a***". Nothing to what my friend and his family are going through!
So BE STRONG and think positive if you are diagnosed. Life doesn't need to stop - go out and embrace it!! New stuff is coming out all of the time for people like you and me!
Ged's e-mail address is: firstname.lastname@example.org