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.
For those of you who are following this saga you will remember that my last post was shortly after attending hospital for surgery. That the surgery was cancelled due to a lack of availability of beds.
I think the fates intervened and the cancellation of the operation was a blessing in disguise. There were just too many risks with the operation and the potential impact to my lifestyle for the following year (at least) were just too much to consider.
So, surgery, which was always my first choice, has now been kicked into touch, and became the option of last resort.
Since December 2014 I have had follow-up appointments with Mr Wilkinson, my consultant. We have discussed fully, my reasons for not going ahead with the surgical option. As a result I was referred to an oncologist, Mr Nagar who talked me through the alternative radiotherapy options.
Given in the hospital radiotherapy department, as daily sessions from Monday–Friday, with a rest at the weekend. The course of treatment would last for just over 7 weeks.
Low-Dose Rate (LDR) Brachytherapy
This type of radiotherapy is sometimes called internal radiotherapy, implant therapy or seed implantation. This uses small, radioactive metal ‘seeds’ that are inserted into the tumour so that radiation is released slowly. The seeds are not removed but the radiation gradually fades away over about six months. There is no risk of it affecting other people.
So after a full and frank discussion with Mr Nagar I was left with a lot of thinking to do, along with more discussions with my wife. The net of this was that I decided that LDR Brachytherapy was the right treatment for me. The following images show the basics of the procedure.
And so it was back to Mr. Wilkinson who scheduled me for a Flow Rate Test. I mentioned that this was somewhat less than successful last time so he suggested that the fall back plan would be a visit to Urodynamics.
As preparation for the Flow Test I had to keep a diary, over three days, of how much liquid I took on board, the type of liquid (tea, beer, wine etc.) and how much pee I produced. On the day of the flow test I thought I would help things along by arriving at the hospital early and drinking lots of water. I spent nearly an hour walking the grounds sipping at my bottle of water. Twenty minutes before my appointment my bladder started to indicate that it would need emptying soon so I headed up to Urology. I let the receptionist know that I might have an urgent need to perform. I was directed to take a seat and to let her know when things became truly urgent. So I sat there and my bladder went to sleep.
At my allotted appointment time I was called through to another waiting area asked to sit, offered tea and told to shout when I was ready to do the test. My bladder snoozed on. It was perhaps another thirty minutes before my bladder woke up. So I looked for the nurse. No sign. Well she said to shout so I did. After all I didn’t want to waste this opportunity. Thankfully the nurse appeared and we dashed to the flow test equipment. Basically it looks something like this….
After successfully performing I was given a quick ultrasound check to see what was left in my bladder and there it was, job done. Although I had a second appointment set for a visit to Urodynamics it was deemed not to be necessary and was cancelled. Instead a new appointment with the consultant, Mr Hodgson, was set.
Time flew by and once again I presented myself for the scheduled appointment with Mr Hodgson. Sadly, not for the first time, there was a distinct lack of notes. At least the computer was working this time and he was able to access my notes that way. However, what was missing was the flow rate test results. Two sets of print outs were found from that date and I had to choose the chart from my test. Thankfully the graphs were very different and I could easily identify mine.
The results were deemed good and I was informed that I would need another rectal (digital) exam as well as having my prostate vital statistics taken.
So there I was again, trousers round my ankles, up on the couch, laid on my side with my knees under my chin. Different room but the scenery hadn’t changed just a blank wall painted in that neutral paint that all hospitals seem to choose.
First up was the rectal (digital) exam and for the first time since this whole process began I actually felt some discomfort, though not for very long. This was followed by an Ultrasound Scan during which measurements were taken of my prostate. These help to determine the shape and mass of the prostate and would be used during the Brachytherapy procedure.
Soon the scan was finished and I was back in the vertical plane. I almost had my trousers secured when I was informed that some of the data from the scan had not been saved. So it was trolleys round the ankles again, back on the couch and staring once again at the blandly painted wall. This time the scan image was saved and once fully dressed we were back to discussing the procedure and timing.
Apparently hospitals don’t keep a cupboard full of these things around and the seeds have to be procured. I wondered if they went to Suttons, Fothergills or perhaps our local garden center to obtain the seeds. I did not vocalise these thoughts. They implant 80 – 100 Iodine 125 seeds @ £30.00 each. That’s dearer than a packet of Impatiens seeds.
When my consultation was over I had to visit with the nurse for nasal & groin swabs. She was less than amused when I suggested that I had saved the NHS money by using one swab for both areas. Either she’d had a humour bypass or had heard it all before.
On 13th May I presented myself for my Pre-Op Assessment and was duly measured, weighed and gave up a blood sample.
Before I knew it a date had been set for the procedure, May 15th. This was sooner than anticipated and I will admit to going through a moment of panic.
On the day I presented myself at reception and was shown through to a consulting room. I was measured and weighed again, blood pressure taken and given some premeds, antibiotics etc.. I was visited by the anaesthetic and the consultant and signed the consent forms after having everything explained to me. Thankfully, this time, the wait was not very long between these consultations and being taken through to theatre.
Preparation for the procedure was a surreal experience, what with me being dressed in the wonderful hospital smock and stockings, also the jokey disposition of the theatre staff. We were actually having a good time and that was before I had any anaesthetic.
It was about this time that I started to misbehave. As usual they inserted a canula, except that they had two goes at that. Then they informed me that I was due to have an epidural, which had not been discussed previously. At the same time they administered something through the canula that they said would make me feel like I had consumed a couple of G & Ts. I remember feeling a little woozy and then nothing more until came to in the recovery area.
I was subsequently informed that the anaesthetists assistant tried on two occasions to set up the epidural. They are supposed to see spinal fluid come out of the needle and on each occasion I wouldn’t give any up. The anaesthetist then took over and tried herself, three more times, and still I wouldn’t give any fluid. At this point they decided that they would give up on the epidural and put me under with a general anaesthetic (GA). Once they had me under, and the procedure was underway, that’s when I really began to misbehave. I decided to vomit.
From what I have heard vomiting whilst under a GA is not good. This required the use of dyna-rod and a vacuum cleaner to clear out my tubes and the upper reaches of my lungs.
As a result of this the procedure took much longer than the estimated two hours which would be normal. A further consequence was that I had to stay in hospital overnight, when I had expected to go home, and I was wheeled up to a ward where I was connected to an oxygen supply with attached humidifier. This was so that they could monitor me and make sure that I hadn’t inhaled any of my stomach contents and didn’t suffer an infection.
So there I was stuck in hospital. Hungry, I hadn’t eaten for over twelve hours. Thirsty, no fluids other than a few sips of water prior to the procedure. Catheterised, for the procedure and for the duration of my observation. Sore throat due to the GA and subsequent rodding out and suction due to my vomiting session.
The nurses brought me a sandwich to alleviate the hunger. A cheese on wholemeal sandwich was the only choice and was so dry that it was very hard to swallow, especially kind to my sore throat …. NOT !!
This was only the beginning of the fun night. Did I mention that I was catheterised ? Through the night I was subjected to hourly obs. Just as I was drifting off to sleep along would come the nurse to take my temperature and my blood pressure. Then, just as I was drifting away again, she would come back and I would feel a pulling at my penis. This was specifically related to the brachytherapy and the catheter. She had to use a Geiger counter type device and scan the contents of bag attached to my catheter then along the length of the tube up to the old fella. Required to ensure that none of my seeds had escaped. Any found would need special handling for disposal. Seeds can escape from their implantation point and move around the body. Supposedly this is not harmful.
Saturday morning arrived and I felt a bit fresher after a strip wash and some breakfast. I was scheduled to go down for an X-ray but someone cancelled it which meant a new booking for later in the day. Hospitals are the most boring places to be when you are waiting to be released.
I was visited by the consultant who informed me that I would need to go for a scan on Monday. This was to ensure that the seeds were implanted in the right place and the right quantity. He also said I could have the catheter removed. Yippee !! His female assistant performed the removal saying “this might feel a little strange”. Decidedly unpleasant would have been my description. Mind you, after my first few pee’s following catheter removal I would have gladly had it back. The sensation is as close to burning as I can imagine and it seems like you can feel it all the way back to your bladder. Thankfully that sensation slowly faded away over the next couple of days.
The consultant also gave me a little blue card, which I have to carry for the next three years. This card informs people that I have “received a permanent radioactive iodine seed (Iodine – 125) implant to the prostate”. This is not because I glow in the dark, but the seeds will show up on various scanners and may even set off alarms at airports.
Back in the hospital, the consultant said he was happy for me to go home but that the final decision was down to the anaesthetist. And he wouldn’t give the go ahead until I had an X-ray.
Well it was nearly 16:00 when I was taken down for the X-ray and it was gone 17:00 before I was finally released. At this time I was given a box of Tamsulosin capsules.
Tamsulosin is used to relax the muscle around the Prostate which, not unexpected, can be a bit irritated following the implants. How would you feel after 80-100 foreign bodies were inserted about your person. Add to the facts that they are radioactive too. The irritation / inflammation can cause the Prostate to swell and constrict the urether making it difficult to pee.
So home I went. What a relief it was to get out of the hospital.
Monday I had a meet with my consultant. We reviewed my notes, discussed my latest blood test and the current PSA levels which are still high. This was not unexpected and I wanted to use this session to fill in answers to a number of questions buzzing around in my head .
How long would I be in hospital?
When could I get back to work?
When could I start driving again?
Some of the responses were a surprise.
My stay in hospital is likely to only be over night but I had previously been told 2 to 3 days. This is, of course, a good thing. The sooner I am back home the better.
Getting back to work is a much more difficult question to answer as there are many factors involved.
The first is the issue of continence or, to be more specific, incontinence. After the op I will be catheterised for a period of time, to allow the newly joined urethra to heal properly. Apparently, it can be quite uncomfortable when sitting, especially in a car. After the catheter is removed I will have to relearn bladder control and this can take quite some time. This is the main issue that made me so reluctant to have the op. Potentially pissing myself in a public place or in the workplace is a huge concept to deal with. Actually, in my mind, sitting in a restaurant with friends or family when my bladder decides to unleash a tidal wave of urine across the floor is probably my worst nightmare. Of course I am magnifying worst case scenarios, so anything less is actually a positive step.
Apparently fatigue is a common issue following the procedure. Not just tiredness but the inability to focus mentally.
The net of all this was that I would probably be away from the office for a few weeks.
My actual return to participating in work by working from home could be very much sooner.
It all depends on my body’s ability to recover. We are all different and our powers of recuperation so variable that it’s nigh on impossible to predict any outcome accurately.
At some point in the proceedings my consultant threw into the conversation that, not only would they be removing my Prostate, but they would likely harvest a few lymph nodes too. Apparently this is becoming a more common practice as analysis of the removed nodes can indicate if cancerous cells have started to migrate.
All good things come to an end and as my appointment was drawing to a close, the consultant suddenly left the room, returning with his hands full. Saying “These are for you ” he dropped a black bag into my hands. This was followed by a large tome similar to a filofax.
These, it transpired, were my initial starter pack of “tenna man” pads and helpful information regarding the after op time. In the filofax, more of the same, plus pages to record my diagnosis and treatment details.
Net result of this visit was confirmation of much that I already knew but also shows that there is no clear cut outcome for my forthcoming procedure.
Next step is the pre-op assessment….. Stay tuned 😉
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.