After years of paying National Insurance there is no doubt I am getting my moneys worth from the NHS. After playing the poo sticks game I have had a Colonoscopy, CT Colonography, a session with a colo-rectal consultant and have been booked in to Surgery School.
My home phone seems like it is a hot line to the QA (Queen Alexandra Hospital).
Following the consult I received a text message informing me that a call had been booked by the Care Coordinator !!! No explanation of why. Obviously I could make a pretty goood guess. But I still had to confirm back to them that a call before midday on the 31st was acceptible. I also took the opportunity to ask what the call was about. The response was almost instantaneous. Lisa, the Care Coordinator from my GP Surgery, having seen various letters between the hospital and my GP, was making a courtesy call to see how I was doing with the ongoing investigations.
So Friday 31st arrived and it turns out that Lisa had very little information. I have since seen the letters that my GP was sent. Not very enlightening. So I brought Lisa up to speed, giving my history so far, up to and including my consult on Tuesday.
She in turn told me about the services that were available to me leading up to the surgery and what support they can provide after I return home. This includes councelling, assistance with obtaining benefits etc. After a very pleasant chat we agreed that she would call me on 28th February to see how I was going. Hopefully I will be home recuperating after the operation.
As I said my phone has been very busy. On Friday morning I missed a call from Julie, one of the colo-rectal nurses. She left a message inviting me to call her back. I returned her call and retaliated by leaving her a message in her voicemail. After one round of answer phone tennis she called me.
She asked if I had heard from the anaesthetist, which I had not. She told me that they had spotted that I was borderline anaemic and that I needed to be scheduled in for an iron infusion/transfusion!
Two weeks ago, the doctor that did my colonoscopy had told me about this. I had forgotten but I am glad that the anaesthetist is on the ball. Julie told me that I should probably expect to be contacted early next week, and that if I didn’t hear from them by Wednesday, to call her.
Later that day I received one of those neutral NHS appointment invitations. Informing me that an appointment has been made for 10:00 on Thursday 13th of February. What is this for? Is it for my iron infusion, or just a face to face with the anaesthetist? There is no information about what if anything I need to take with me. Nurse Julie told me I should arrange a lift for when I have the infusion just in case I’m not fit to drive after. There is nothing in this invite to clarify so I will have to call them on Monday.
One thing I will say for the NHS, once you are in the system they do look after you. So far, I have nothing but praise for the staff that I have been involved with. With the one exception, the CT Colonography, they have ensured that my experience thus far has been reasonably pleasant.
Tuesday 28th January, and my first meeting with the consultant. It was quite intense and a bit of a good news, bad news scenario.
First up the bad news, the results of the biopsies taken during the colonoscopy confirm that the tumour is cancerous. I guess I was expecting that and was already resigned to the fact that surgery was required. Confirming the cancer was just detail.
On to the good news. The results of the CTC show that the cancer seems to be contained within the colon and hasn’t spread elsewhere. Apparently, there are a couple of polyps but nothing to be concerned about at this time. Some time after the surgery, I will likely have a colonoscopy, and the polyps will be dealt with then.
I was told that I should get a surgery date within the next three weeks. The surgery itself will be of the keyhole variety. The consultant ran through some of the issues / risks. Obviously, all surgery comes with risks. It is invasive, and the body wasn’t designed for easy access. In my case, proximity to the spleen was of concern.
Given that my tumour is causing a partial blockage, surgery is the only option. It is what it is.
Prior to that, it seems they have a lot of fun activities planned for me, so I will be visiting the Queen Alexandra Hospital …. a lot.
I have already been booked into surgery school. This two hour classroom session is on Monday, 3rd January, to be held at the Oasis Centre. The purpose of the class is to prepare the patient, me, for the surgery and after. To tell about the process, the time on the high dependency ward, and preparation for going home and what to expect in the time following the procedure.
Another treat will be a session with the stoma nurse. Although it isn’t planned, the surgeons won’t know until they go in and may decide that a stoma is necessary. This may be temporary to allow my bowel to heal or, worst case scenario, permanent if they can’t repair the bowel. Apparently, all bowel surgery patients are taken through this possibility and the ramifications.
Finally, there will be a consultation with the anaesthetist. If they can glean enough information from my notes, then it should be just a telephone consult. Otherwise, a further trip to the QA will be required.
Once I have had the operation, I can expect to be in the hospital for about a week or so. Escape will be dependent on my how fast my bowel starts to function. I was told that some patients have gone home after three days, but typically, it is a five day stay.
The things I’m prepared to do to get out of cooking and housework.
And then it’s on to recovery, i.e. back to normality. Again, everyone’s different, but they were talking three to six months.
I’m coming to realise that this is a big operation. Nobody has actually vocalised this fact, but I’m picking up on the odd words that were dropped by the consultant and one of the colo-rectal nurses.
I have no idea if there will be any after treatment, i.e., chemo or radio therapy. This was not mentioned, and I forgot to ask, but perhaps that is a discussion for after the operation, when they know what they are dealing with.
In the meantime, I have been having a lot of discussions with Gerry about preparing for my time in the hospital and immediately after. These are non medical in nature.
Gerrys mobility is OK around the house, but she can’t stand for long. So preparing meals for herself could be problematic. There are a number of companies that make and deliver ready meals so we are considering getting some to put in the freezer. Gerry should be able to manage those.
Of course, after I return home, my capabilities are a bit of an unknown quantity at this time. There are likely to be restrictions on lifting and carrying. Simple things like lifting a kettle to make a cuppa may not be allowed.
I won’t be allowed to drive for a while, and although Gerry still has her licence, she hasn’t driven for a couple of years. So we are going to have to rely on family to provide taxi services for any appointments etc..
Sadly, this bloody tumour is causing a lot of disruption, impacting others’ lives too.
At the back end of February we have tickets for two concerts. The first is for Uriah Heep, a band that I started following in the 70’s. This concert is part of a 50th Anniversary and farewell tour. Missing that will be a bit of a blow.
The other concert is for Brit Floyd, a Pink Floyd tribute band. We got tickets to this show as a Christmas present for Summer, our great-granddaughter. She is always saying how she likes Pink Floyd, so we thought a tribute band was the nearest she would get to the real thing.
We are already trying to arrange for others to take the tickets
Two further events are possibly in jeopardy. The Goodwood Members Meeting in April, which usually entails a whole day on my feet. And then there is an Andre Rieu concert at Wembley in May. We will just have to see how my recovery goes.
After a week of a Low Residue Diet, a day of fasting, and a day supplemented by laxatives, the dreaded day had arrived. (See my previous Poo Sticks post)
My appointment at the hospital was scheduled for 10:00. By 10:45, I was sitting in a small office with a nurse. I gave my medical history. Then the nurse showed me to a room where I could change into my hospital gear.
It was there that I was provided with the standard hospital gown, open at the back. I was also introduced to my “dignity pants”. These are made out of some kind of paper, very loose and with a trapdoor at the rear, for easy access.
Over all this I put on my dressing gown and slippers. Obviously I was the epitome of sartorial elegance. And so, suitably attired, I was collected and led down several long corridors. Up several floors to the theatre suite.
Why are the reception/changing areas always so far away from the treatment rooms ?
Anyway, on arrival, I was fitted with a cannular and had my obs recorded.
After a short wait I was loaded onto a trolley in preparation for entering the theatre. There was a further short delay as they cleaned the room, after the previous patient had been evicted.
Showtime !
I was wheeled into a small room packed with people and equipment. Well, three nurses, me, and eventually the doctor. Very snug.
I was asked to roll on my side and a muscle relaxant, sedative and pain suppressant were administered. Being on my side allowed me to watch the whole procedure. I viewed it on the same screen that the doctor was using.
As the camera traveled along my colon, I was thinking this is like Indiana Jones riding a mining cart along a tunnel. Laid out before me were the pink walls of my colon. I was impressed with how well I had cleaned up, thanks to the Picolax. As we trundled along in my cart, me riding shotgun with the doctor, we rounded a bend only to be confronted by …… what was that ? A rock fall, a cave in …. what ?
I spoke out loud, “Oh that doesn’t look good!”. Nobody responded to me, which was perhaps quite telling.
At this point the doctor started taking photos, biopsies and leaving markers (tattoos). And then the mining cart started the return journey and the procedure was over.
There was very little discomfort in fact my imagination blew everything out of proportion. I found being able to see what the doctor was seeing very interesting. I have since heard from friends and family that have experienced a colonoscopy. They all have no knowledge / memory of the procedure as they were all knocked out. I was told that I would be sedated and my records show that I had fentanyl. But, I didn’t experience any softening of mental focus. I am guessing that I was only given a minimal dosage.
I was wheeled out to the recovery room where I was given a cup of coffee and some biscuits. That was the best coffee ever ! Being my first proper drink since around midnight, twelve hours before. Just before I went to bed.
After a repeated series of obs, I was allowed to dress. The nurses and I then headed down to the discharge waiting room. But after more that half an hour nobody came to see me. So, I went off to find someone. A very helpful young lady in scrubs dispatched a nurse to find out where my doctor had gotten to.
It transpires that he was up to his elbows in another patient. I was transferred to another waiting area, with comfy seats. Being the only one in there, I should have realised that this was the bad news room. The doctor arrived, with back up.
The doctor was supported by one of the Bowel Cancer Screening nurses and a nurse from the Colorectal unit.
The doctor then proceeded to tell me what they had found and the next steps.
Firstly, he is pretty sure I have Colon Cancer. Confirmation will come from the biopsies they too during the procedure. Apparently they took eight samples. I was watching but didn’t count.
The “rock fall” was in fact the cancer / tumour / growth and it prevented the doctor from completing the procedure. The camera could not get past the growth so not all of the colon was examined.
The doctor seemed pretty positive. Given the position of the growth, it should be operable. I might get away with keyhole surgery. And, most importantly to me, I might not have to have a bag. However he went to great pains to stress that none of that is guaranteed.
To determine what is going on further upstream, I am scheduled for a CT Scan. I already have an appointment to see a consultant the following Tuesday.
By then he will have the biopsy and scan results and should be better placed to formulate a battle plan.
So at the end of my last post I had just escaped from the QA following my Brachytherapy procedure. This was to be a temporary escape as I had to present myself back at the hospital for a CAT scan.
So the following Monday I dutifully presented myself for scrutiny. Unfortunately it was organised chaos due to a lack of availability of notes. This is not the first time that my notes have not been available although it is more usual for them to not be available for an appointment that has been set up for weeks.
I did press the radiographer as to why it was necessary for my notes to be available when they knew that the scan was to confirm placement of the radioactive seeds in my prostate. I said that I assumed they knew where the prostate was and therefore where to target the scan.
She, very patiently, explained to me that having a scan 3 days after brachytherapy was not normal procedure. The norm is to have an MRI after about a month, so they needed to know if there were any other issues that they needed to be aware of. They did their best to find my notes, even going up to the ward to search on the assumption that they, my notes, were “in transit” due to the weekend.
My consultant must have foreseen this as he had provided me with an extension number on which he could be contacted, even though he was in surgery. I passed this number over to the radiographer and after a short chat with my consultant we were good to go.
So after nearly two hours pfaffing around I had my ten minutes of scanning and we were out of the hospital. Of course there is then a period of trepidation, waiting to hear if I was going to have to go back in for more seeds. As time passed I relaxed, no news is good news after all.
A month after the procedure I had the MRI. This was a much quicker visit than my previous MRI. I guess because this time they were only interested in checking the prostate itself and the immediate surrounding area.
Once again, there is that trepidatious period of time where you wait for the bad news phone call. And, once again, as time passed I relaxed.
The next check point in all this was to be a visit to the consultant preceded by a visit to the vampire clinic.
Which brings us up to date.
Last week I gave the blood sample required to check my PSA levels and yesterday I visited my consultant. After all the pleasantries, how is your bladder, how are your bowels, etc. etc. we eventually got round to the important business i.e. talking about my PSA.
Brilliant news !!
Prior to the brachytherapy my PSA was up at just over 13. Now my PSA reads just over 1. Which, in the words of my consultant means that the seeds are doing their job. My next check point will be in six months when I will have another blood test and another consult.
My thanks to Clotho, Lachesis and Atropos, the three fates (Moirai) for watching over me. I think they were watching over me last December when my operation was cancelled due to a lack of hospital beds. When I think about all the possibilities I am so, so glad that I have taken this path.
So, It’s been a while, almost exactly a year. Had a fairly intense conversation with a close friend last night. The intensity was about Steve Jobs and Apple, not my prostate, but that’s another story. Anyway during our conflab I was berated for not adding anything to my blog. In essence he was telling me off for leaving my story on another cliff edge.
As it happens I am approaching another significant milestone on this journey and by the time I finish this we’ll be at another cliff edge.
So here we go.
Consultations
Just before Christmas I had a meet with my consultant. Well one of them, seems I have three and they are not as entertaining as the Three Stooges, must be the subject matter. Anyway they take it in turns to see me.
I duly present myself at Urology Reception and after a short wait in the “General” waiting area we are ushered through to sit in a holding pattern outside the consultation rooms. I have been here a few times now and the wall opposite the seats isn’t getting any more interesting. Pride of place is given to a cross-sectional view of the male anatomy.
I’m not sure if this image is the one I get to stare at, but it’s a close match. I keep expecting some hints on the prime cuts and interesting ways to cook them.
I digress.
So, seated in the consultation room, I am informed that the Template Biopsy hasn’t disclosed any new frightening discoveries. In fact this latest biopsy pretty much supports the findings of the original TRUS (Trans Rectal Ultra Sound)(See Part 1 above). Basically my cancer is quite small, isn’t raging doesn’t on the face of it appear to be life threatening. In my words we are effectively back at square one. That is, the situation is the same as it was around 18 months before.
Relief
Obviously, I was quite relieved and commented to the consultant that I had fully expected to have to make a decision following the biopsy results. He was quite interested to know what my decision was going to be. I explained that I would probably have opted for the operation, prostate removal. My reasons being that I would be able to fall back on radiotherapy if the cancer reappeared. Once you have had radiotherapy surgery really isn’t an option.
Lecture
The consultants response to this was to give me a fairly forceful lecture on the possible side effects to the surgical option. Urine leakage and erectile dysfunction being the two headline leaders. He hammered home what a life changing thing incontinence can be and that I shouldn’t go into surgery lightly. For a surgeon he was doing a good job of selling radiotherapy to me. He then went on to explain to me what a difficult operation it is to remove the prostate.
Apparently my weight was a big consideration here and it was at this point he asked me to stand up so he could lift my shirt and demonstrate. He explained that for keyhole surgery, even though this isn’t abdominal surgery, the entry point is through the abdomen. Having entered the belly they then have to turn due south and head deep into the pelvic region. He pointed out that as I was a big lad, with a significant “food baby”, the journey through my entrails would be a long one. That he wouldn’t just have to negotiate his way past all the tubing but would probably have to burrow through extra fat. A new twist was that for the operation I would be tilted head down, meaning that all my fat encrusted viscera would slop up towards my lungs to press against my diaphragm. Wasn’t this a good thing I enquired, won’t this clear the way and make the operation easier. Nope, this migration makes life difficult for the anaesthetist. Yards of tubing heading north makes it difficult to keep the lungs full of oxygen. After this I wasn’t sure if he was bigging up his role or trying to dissuade me from having the surgery.
After all he is a surgeon, isn’t that his raison d’être. To be fair he did pretty much say that himself, that he just wanted me to be clear that surgery is not the easy option, nor is it without risks. I suppose I could have suggested that he had misjudged his audience since I was pretty well read up on the subject. I don’t let anyone go rummaging around my insides without finding out what they are supposed to be doing and what the pros and cons are.
Carry On Regardless
So, having come to an understanding I opted to carry on with the Active Surveillance with a view to probably having a scan and/or another biopsy. I must have given the impression that I wasn’t wholly convinced by his lecture and he was rather keen that I see one of his colleagues for an alternative view. This I agreed to do and we shook hands and parted company.
Approximately a month later I had an appointment with consultant number three. We discussed the biopsy results, the options open to me and the pitfalls of the various treatments. Once again it was agreed that I should carry on with the Active Surveillance. Part of the Active Surveillance regime is the taking of bloods on a regular basis, every 3 to 4 months, to monitor PSA levels.
PSA is not viewed as an accurate indicator of the presence of cancer but once diagnosis is confirmed the PSA can give an indication of change.
Changing Perspectives
And so it was I found myself once again at the QA, being given an opportunity to brush up my male anatomy and finally sitting in one of the consultation rooms. No consultant this time as I was seeing the Nurse Specialist. She talked me through my history and pointed out that my PSA levels had gone up. Previous readings had plateaued but the general trend was up. Her advice, based on 18 years of experience, and taking into account my age, she was of the opinion that it was time to take action. This was a contrast to the position taken by the consultants who were prepared to let me continue with the Active Surveillance. We kicked the subject around and it was agreed that I should go for a MRI scan and that I should then see the consultant to discuss the results.
MRI
If it’s good for nothing else, prostate cancer is introducing me to some new life experiences. TRUS, Template Biopsy and now an MRI. Everyone that I have spoken to, that has had an MRI, have said that they didn’t enjoy the experience. I wouldn’t say that I enjoyed it either but I didn’t actively dislike it either. I did, however, find it interesting. It’s noisy and a bit claustrophobic especially when you are my size. As your lower extremities disappear into the centre of the doughnut the hole begins to look a bit small. And when the table moves further in and your belly and chest further fill the available, visible, free space I suspect that the experience is similar to sausage meat being transported towards the sausage skin waiting on the tube at the outlet on the mincer. Another interesting thing I noticed was that as the MRI is clacking and clanking away the muscles in my left leg started to move in time with the noises. Not twitches as such, just a slight pull. Similarly, my wedding ring was also pulsing in time. These sensations varied with the tone of the MRI. Eventually it was all over and I left the QA to await the call to go and discuss the results.
Decision Time
Time moves on very quickly when you aren’t keeping an eye on it. Before I knew it I was back at the QA staring at that same wall with the same diagrams and posters. Still no recipes. And then into the consultation room.
Much to my surprise he told me that the results were really quite good. That is the MRI showed quite low levels of cancerous cells and that these cells do not appear to have moved onto other areas. All in all the MRI was pretty much repeating what the Template and TRUS biopsies had shown before. The only fly in the ointment was the steady upward trend of the PSA which didn’t seem to be echoing what the scan and biopsies were saying. Once upon a time doctors told you what was going to happen and then got on with it. In these PC times it’s all about patient choice. The trouble is the patient is necessary best qualified to make the decisions. Even if they have all the facts in front of the. And that’s the dilemma that i was confronted with.
I had the diagnostic results all laid out before me. I had all the options for treatment defined. I just had to make a decision.Anyone who knows me will know that I can’t make a decision when I’m in a restaurant with menu in hand. And then it doesn’t really have life changing implications if I make the wrong decision. Here there was no truly wrong decision to be made but the implications were momentous.
Decision Time
In the end I decided to go away and think on it. Subconsciously I probably knew what my decision was, but mentally I wasn’t ready to say it. I pondered for several weeks and then contacted the QA and told them to put me on the waiting list for surgery. The consultant had told me it would probably be a couple of months before I got a surgical appointment so I was looking at December / January.
Appointments & Disappointments
A couple of weeks ago, on a Tuesday, I got a call informing me that my appointment had been made. It was for the following Friday. Three days notice. Unfortunately I had other plans. The proposed day of the op we were due to go away over night and a week later we were heading up to Merseyside for a few days to spend time with family. Hotels had been booked and paid for and I wasn’t prepared to pass on those. The young lady tried to persuade me otherwise, telling me that “it’s really important that I had this operation”.
I wondered who she thought she was talking to. Wondered why she might think that I didn’t know the importance of the surgery. After all, I’m the one carrying the infected walnut around inside me. I’m the one going through the various biopsies, scans and blood tests. I’m the one who is being nagged by various family members to get on and have it done. She did, does, sound very young.
So, disappointed, she said she would call me again when they had another appointment for me. And that call came yesterday.
I have a busy week, next week. Monday I meet with the consultant. Wednesday I go for my pre-op meeting to see if I am fit to have the op. and Friday at 07:00 I have to present myself at Theatre reception.
On Tuesday 9th October, 2012 I had just completed an appointment with the consultant dealing with my Prostate Cancer. I left the hospital clutching the details of my next appointment.
Having elected for “Active Surveillance” the next appointment, to review PSA blood test results, was scheduled for four months time. i.e. 11:10 on Monday 18th February, 2013
A while later, seems like a couple of weeks, I was notified that the appointment had been cancelled and that I would be advised of a new appointment in due course. Time passed, Christmas came and went and no new appointment. Knowing that I had to arrange for a PSA blood test a couple of weeks ahead of the consult and not having a specific appointment I took a punt and arranged for the blood test to be carried out on Friday 1st February.
Well time flies by when you are enjoying yourself and here we are, half way through January and I still had not heard anything regarding a new appointment.
So I contacted the Urology Department at the QA where they explained that the original appointment had been cancelled due to government and/or NHS rules and I had been placed on the Outpatients Waiting List. However, very helpfully she said she would arrange a new appointment for me.
“I have an appointment for you in February” she said.
“Monday 18th” she said.
“That’s amazing” I replied “My previous appointment was on that day”
“What time ?” I asked.
“11:10” she replied
“Bizarre” I responded. “That’s when my original appointment was scheduled”
“Oh I can’t give you that time” she jumps in. “The diary is showing a conflict with your original appointment even though it has been cancelled.” “I’ll have to give you another time. How’s 11:20 ?”
Obviously I accepted the new time and she said she would mail me confirmation.
So in summary, the new rules meant that my appointment had been shifted by 10 minutes, had cost me a telephone call and cost the NHS/QA three appointment letters.
WHY ?
I can only imagine that they are applying the same petty bureaucratic rules that stop me from being able to book an appointment, to see my GP, greater than a month ahead of time.
WrAnTz 