A good morning at Medway Hospital and a surprise

Back again after a day off.........

I will get the tiny niggle out of the way first:

Hospitals make it very clear in their appointment letters that you must either arrive on time or let them know if you will be late. Perhaps if they offered to send you a text when they are running late, their DNA (Did Not Attend) rates would go down........mutual benefit?

Meeting with The Great Man very cordial this time; hand shaken, specialist nurse introduced, intelligent discussion in grown up language. If you need a model of how it could, and should, be done, this was it!

A lot more options than I thought...................

• Do nothing, but monitor (worth considering, but not recommended and not a serious contender)
• Minimally invasive surgery (his speciality): Loads of potential side effects/problems which do not sound like a good idea. Existence virtually guaranteed to be prolonged, but not necessarily "life".
• Radiotherapy
• Brachytherapy which is very targeted radiotherapy using implants
• Cryotherapy which, as the name suggests, is about freezing the cancerous cells to kill them
• HIFU which sounds like a Japanese literary form, but actually stands for High Intensity Focussed Ultrasound

There was a 7th which I suggested, but he was not keen on.......................will hold it in the back of my mind just in case though.

The last 4 are the area of expertise of one of his colleagues; I have been promised an appointement a.s.a.p. with the colleague so that I can find out about those. The last one sounds intriguing and is apparently offered at the level of a clinical trial.

I already have a weighted matrix for deciding which to go for in my head; now it is just a matter of gathering enough information to be able to make an informed decision.

And now for the wonderful thing that  happened the other day..........

Saturday night, had a superb meal cooked by one of my best friends and a great evening of convivial conversation. Wonderful in itself, but it was what happened in the kitchen that pushed it into a different realm .

[If you have read this blog from the beginning 1) sorry for your suffering; can't believe you made it this far, but thank you  2) you may recall the second post in which I said I was going to get a tattoo and needed to find a good tattooist.]

Mine (joint) host and chef presented me with a card from a tattooist and said: "it is all taken care of, just ring him after Tuesday".  I think that it was probably the closest to speechless that I have ever been. You know who you are.............thank you, it meant a lot.

Something mellow with meaning from one of the late greats.........

https://www.youtube.com/watch?v=gAetSwVewSc&list=AL94UKMTqg-9C3nm41WbddIhKh0JJBLyYd

Nothing much happening

A great day in the "real world" doing real things with real people at Medway Council yesterday. Medway Social Workers are great! If you can ever get to combine work with the things you love doing, then that was it...........

On the Hospital front: nice woman from the appointments department called yesterday to let me know that the Great Man had invited me to see him on Monday and I would receive the letter confirming it today. Investigations not complete, so this is intriguing. A potentially interesting bunch of options:

• a dressing down for being difficult?
• news about something else they have found?
• an explanation of the initial delay ?
• a discussion about treatment options?
• none of the above?

Who knows? Will find out at 11:40 (ish) on Monday...............

Meanwhile, I had a lovely email from the Care Quality Commission. I had completed their "comment on your care" online form the other week giving them some of the details about the early delays and inviting them to read this blog. It was a straightforward account, but I did add that I hoped to be able to give some really positive feedback about Medway Hospital by the end of all this. These are the people who monitor hospitals and were responsible for putting Medway Hospital in so called Special Measures. They had passed my comments on to the local Inspector and gave me her name........that means that I can work out her email address if I ever need it!

Will not update the blog tomorrow as some really good friends have invited us for dinner tonight and I will probably be recovering from a bit of a hangover...........

Quick update: two letters from the Hospital. One to tell me that I have an appointment on Monday, the other was copies of the internal referral letters sent by The Great Man. I asked to be copied into all correspondence, not believeing that it would ever happen, but, lo and behold, it is happening! According to my in-house expert on Hospitals this is unheard of. Full marks.

A whimsical song to keep you amused. We have all met the subject of this one!!

https://www.youtube.com/watch?v=fz44_Sp0K8A

Good people and a CT scan

Some days are full of surprises and today was one of them............

The day started with getting ready for the CT scan. The instructions given by the nice woman over the telephone yesterday were fairly simple: take prorietary laxative the night before, don't eat for at least 4 hours and drink one and a half pints of water an hour or two before the scan. Easy! Thank goodness the water quantity was given in "real" units; I think that I might have struggled if I had been told to take 850ml..........

Not quite as easy as it might have first appeared though. Taking a dog for a 2 mile walk on no breakfast, with a pint and a half of water sloshing around inside you and (near as dammit) nothing else can be an interesting challenge!

Arrived early in the CT department, with my own plastic bag, and invited to take a seat in the waiting area. Summoned by a very pleasant, smily, chatty, radiology assistant and shown to a changing room just like the one in the MRI department. Same routine, remove most of clothes, don two gowns (one forwards, the other backwards; an interesting  19th century get up I am told by my in-house expert). Smiling friendly person was quite a surprise, but the real shock was the provision of a shiny, clean, new plastic bag to put my clothes in. Having been caught out last time when I had to use a second hand bag that had probably been used by at least 10 more people before me, this was a revelation!

Suitably attired and clutching my plastic bag, returned to waiting area. Waiting areas in Medway Hospital can be fun. We had a fun time comparing our glamorous attire, how long we had been waiting, and people commenting on how good e-cigs are (the one thing I kept on my side of the plastic bag). Summoned by a young man to the tiny treatment room............

The young man explained that he was the radiographer who would be "seeing me through" the experience and generally chatted cheerily whilst inviting me to present an arm. Vein identified, Cannula selected (didn't know they did them that long!) and inserted. Asked whether there were any side effects from the contrast medium (none) and told him about the MRI experience: he was horrified! We had a great chat about all sorts of things in a very short space of time and he promised that he would read this blog. I hope that you are.........you were excellent!

Back to the waiting area.............a few minutes later I was approached by a new "player" He asked me if I would mind waiting a little longer as they had an emergency case to fit in. "Would I mind" was a very good way of breaking the news to me that I was going to have to wait.

CT scan fine. Get onto the machine, cannula hooked up to a pump and advised that a) the machine would talk to me (she was American), and b) when the contrast medium is injected I will probably feel a warm glow. Spot on! If your central heating fails this winter, I would recommend this as an alternative way of keeping warm!

Advised that I would need to drink more water than usual for the next few hours. Call me naive, but I interpreted "you will need to......" to mean that it will be good for your kidneys to drink a little more water after having the contrast medium. From my experience, what it actually meant was "you should keep at least a gallon of water within reach at all times for the next 6 hours as you will have a raging thirst!"


Job done, another exchange with the chatty assistant whilst she removed the cannula. First person to refer to "people" rather than "patients". So refreshing, she should be cloned!

and back to the car...............

Hint: if you have just had a CT scan, are full of contrast medium and empty of food, do not go immediately to an important meeting! 'nuff said.........

Two more really good things before I reward your patience with today's specially selected Glasgwegian song....

Email from Specialist Nurse saying she hoped I had got on ok with the CT scan and that she had been over to the surgeons who would be onto my case at their meeting early next week. Well done to her.

Telphone call from my GP practice this evening to let me know that they had made a parellel referral to the surgeons at my request and faxed it over to them. Excellent service from Malling Health.

Not sure how surgeons react to receiving two referrals for the same person and the same investigations.........will find out next week!

Now the modern Glasgwegian folk song.......
https://www.youtube.com/watch?v=YRbfFZnJZYQ

For anyone who finds the accent a bit difficult to understand, an alternative, easy to understand, treat:
https://www.youtube.com/watch?v=6RRv35Ig2mg

Nearly forgot.......

...................today's tune. Close your eyes, sit back, relax and enjoy...............


https://www.youtube.com/watch?v=6OFHXmiZP38

The Awkward Squad strike again!

Received a nice email reply from the senior specialist nurse yesterday in which she promised to pursue both the CT people and the surgeons to see if she could get things moving.

Came back from the local metropolis to find a 'phone message. 'Phoned back, got answerphone. Waited 10 minutes, woman in CT department 'phoned again; this time we managed to speak...................

Magically, the referral has been "vetted" (I though that was something that we commissioned for horses!) and an appointment arranged for tomorrow morning. Well done specialist nurse! Nice woman in CT department too: gave me all the instructions over the phone and seemed genuinely pleased to be helping.

Hint: if the hospital is not moving fast enough, identify the right people and give them a prod.

Just the surgeons to deal with now and impediments to getting on with things removed...........and thereby hangs a tale already.

Looked at the hospital website, checked out the identity of the secretary to the surgeon. Sent her a short email asking when the appointment would be. The following sequence defies belief, but it is true:

• Got an "out of the office" email. Will confess I did not bother reading it.

• Opened the email a few minutes ago to find that she has now left the hospital and had given the email address of the person to whom all enquiries should be directed.

• Sent an email to the new person

• Got an email back pretty quickly saying that she was not the consultant's secretary (she works for another department), but that she had sent my email on to the consultant. Full marks to her!!

The lessons from this one are 1. Do not believe what you read on hospital websites, and 2. Open all your emails even if they appear useless (obviously not the "your online account has been blocked" type!). Failed miserably on both I am afraid.

Bit of a rant about Medway Maritime again

24 hours after seeing The Great Man. Regular readers may recall that he said he was referring me for a CT scan.................

Called the CT department: no referral on their system yet and they would then need a radiologist to "vet" it as and if it arrives. Presumably they do not trust the judgement of the consultants in their own hospital...........
Asked how long the wait would be and was told they try and fit cancer patients in quickly: one to two weeks! This might be Medway Maritime's idea of "quick"; no wonder they are in Special Measures. Needless to say, I have put a call in to the private hospital they recommended.

I was also told that he was referring me to the colo-rectal people for an endoscopy and potential biopsy/treatment. Tried to contact them: answerphone saying out of the office.

Bearing in mind that both of the above have to take place before I can even discuss the treatment for the primary problem, it does look like the hospital has a policy of either driving people to the local private hospitals or hoping that they will go away one way or another. Might explain the low life expectancy in Medway.

Will spend some time thinking about how to play this one. I dearly want to be able to say nice things about the hospital and do not want to play my "trump card" contact too soon. If he gets involved, my care will certainly come up to standard, but it is an irrevocable move once he knows what goes on (or does not) and the hospital might not recover.

Enough heavy stuff. Got 18 minutes to spare?

https://www.youtube.com/watch?annotation_id=annotation_100727&feature=iv&src_vid=JmyXTOHC3w8&v=W5_8U4j51lI

Pros, cons and dyscalculia

People of a certain age may remember a brain teaser that Primary School teachers loved to catch kids out with. It goes something like this:

A frog is at the bottom of a well which is 30ft deep and has slippery walls. Every time it jumps, it goes up 3ft and slides back 2ft. How many times does it have to jump to get out of the well? (The answer is at the bottom of the page for those who do not get it or think the answer is 30).

Welcome to a world where the frog starts half way up, then jumps up 3ft and slides back 4ft each time!

Before the meat of the post, a little more light relief...........

I am now getting used to the fact that, whenever I meet any health professional, they ask me what my date of birth is despite having it written in front of them. Often it is contained within a letter that I have handed to them. I offer two possible explanations for this:

1. That they suspect I may have stolen the letter and sneaked in off the street pretending to have cancer
2. It is some form of subtle test to see whether I have dementia

There was a new twist to this one today. I was asked (by the same person) what my date of birth was which I confirmed having learnt that it is easier than trying to be smart about it. This question was followed with, and I kid you not, "how old does that make you?" I had always thought that 114-58 was a fairly basic calculation; evidently not for everyone. The person concerned is very unlikely to be reading this, but just in case, here is something which might help:
http://www.amazon.co.uk/Calculator-credit-sized-Slimline-travel/dp/B002JUD3V2/ref=sr_1_2?s=officeproduct&ie=UTF8&qid=1412007301&sr=1-2


Now the "meat"...........
Finally met The Great Man. Will not go into the details of the meeting other than to say that he was a pleasant enough chap, although we did have a few points of friction which I think were really about who was in charge of the meeting (those who know me will understand that one!). The important bit is that he has an excellent reputation and runs one of only 5 specialist prostate cancer centres in the country. He is a pioneering surgeon and seems to be gathering a lot of "bright bunnies" around him.

If you have read this blog so far, you may recall that today was the day I hoped to be able to agree a treatment plan and start to take my life off "hold". No chance! Turns out there are a couple of worrying things that have shown up in the scans and The Great Man will not go any further until they have been checked out. Next steps are a CT scan to make sure that the blip on my pelvis really was the result of falling off a horse and (not so much fun) an endoscopy from what might be termed the "wrong end" of things. No treatment plan, or discussion about the options until:

Blood test (they will not do the CT scan without one)
CT scan
Referral to what the Americans call a Procologist
Endoscopy
?another biopsy
Report on the biopsy to the proctology people
Decision made by proctology on whether there is a problem and what to do if there is
Doubtless several clinical meetings and lots of scratching of heads
Report back to The Great Man

After all this, someone might be in a position to consult me about what could happen next. Based on the experience so far, this will probably be somewhere around Christmas by my reckoning

Bearing in mind that the National Standard is 2 months (62 days) between referral and commencement of treatment...................

The good bit is that they are being thorough. Full marks for that.

Had the blood test on the spot (well, a walk across to the Phlebotomy department and 40 minute wait), so no bar to CT scan being booked. Will contact them tomorrow afternoon if they have not been in touch.

As for the Proctologist, I have his name but will probably not pursue him until Wednesday.

This evening's song:

https://www.youtube.com/watch?v=q-fSZRYeBWk

The answer is 27. On the 27th jump, the frog is out of the well so cannot slide back down.