I am currently languishing in the Perth suburbs, Western Australia.
Last October, my son-in-law Steve was diagnosed with a brain tumour (glioblastoma). Very quickly, following the diagnosis, he was whisked into hospital for brain surgery. At the time we didn’t know how much after care he would need but we offered to help out and so my wife and I travelled out to Oz to provide support.
After care wasn’t the issue. Steve really recovered well after the surgery with no real pain and none of the residual weakness that would have been present following an abdominal or chest operation.
No, the follow up treatment and schedule was the real issue.
The radiotherapy was daily, Monday to Friday, for six weeks. Whilst the chemotherapy was tablet form, taken daily Monday to Sunday during the same six weeks. Following the surgery Steve was forbidden to drive for the next six to twelve months. So, to enable my daughter to carry on working, my role was to act as chauffer. Daily trips to Fiona Stanley Hospital, Perth interspersed with trips to Sir Charles Gairdner Hospital, also in Perth. As well as various trips for blood tests and scans.
As the chemo built up in his system, the expected nausea and fatigue and exhaustion also built up. Alongside all this came the loss of appetite and corruption of taste buds.
And here is the conundrum.
What do you feed someone, who has all this going on ?
Even after the initial course of chemo and radio therapies has been completed, the dietary disruption continues.
After all, it is hard enough, under normal circumstances, to cater for the normal familial likes and dislikes of
a granddaughter who doesn’t eat meat that isn’t chicken or ham (unless its a burger or a rissole, then almost anything goes) and has a limited set of veggie likes (eats broccoli and cauliflower but not green beans or pumpkin). By the way she loves fish but won’t eat salmon.
a wife who loves fish especially salmon, has a short list of veggies (eats cauliflower but not broccoli and no sprouts or carrots) and doesn’t eat “spicy” food or creamy food i.e. white sauces are something of a minefield. Still waiting for the clear definition of what constitutes spicy.
a daughter who also doesn’t like “spicy” food, likes fish that isn’t salmon or trout. Not sure about tuna ??? Eats most veggies (definitely no sprouts) and all non chicken meats have to be cooked to near charcoal point i.e. no pink
Before the tumour and chemo, Steve used to pretty much eat everything. Now he finds the flavour of most foods to be too strong, overpowering.
So, bland is the order of the day. Steamed fish or chicken predominates. Or the same but simply pan fried or baked. No sauces and definitely no herbs or spices. Some meals comprise just two tenderloin chicken pieces, total weight around 60g, steamed and maybe accompanied by a couple of carrot batons and/or a small broccoli floret.
So, how do I feed Steve without overpowering his hypersensitive taste-buds ? How do I coax him to eat a bit more as his energy levels are already depleted due to the chemo ? The lack of food does nothing to boost those already depleted levels. How do I introduce a bit of variety to his diet ?
Although he completed the initial concurrent chemo / radio therapies, my son-in-law has now started a new regime. He takes a five day course of tablet form chemotherapy, one week in four.
So, the disruption to taste, appetite, stamina and energy levels will be continuing for the next six months at least, maybe even for twelve.
For a couple of days I was suffering from a “crick” in my neck / shoulder. I have no idea how these things occur but I do get them from time to time. Possibly caused by laying in an odd position when I sleep or, perhaps, caused by laying in a draught. Air-con ??
Anyway, having taken some pain killers and trying a hot shower focused on the painful area I was offered the use of a “wheat-bag”
The bag was heated for just two minutes in the microwave and on removal was quite warm to the touch. Not hot.
I placed the back on my shoulder such that the bag was also partly heating the side of my neck. After 10 minutes or so I could feel that the “crick” was easing so the bag appeared to be doing the trick. Possibly the heat combined with the pain killer taken earlier.
After treatment I went out for the day and, with time, the movement in my neck became much easier and the pain had virtually disappeared.
Later that evening I was changing my shirt and noticed a red mark on my shoulder. A more detailed inspection via mirror showed what looked like bite mark, almost like I had been bitten by a human. No indentations, just two large red horseshoe shaped marks . At the center of these two marks were three large blisters, each one approximately half a centimeter across. Subsequently these have joined to become one large blister.
I should point out that the wheat bag was not placed directly on my skin as I was wearing a heavy cotton polo shirt at the time. Also, at no time did the heat being emitted by the bag feel extreme or cause any discomfort. And I have not felt any pain since. Some may suggest that perhaps my pain threshold has some bearing but I don’t think so. I have, over many years, experienced burns caused by hot metal during metalwork at school and in later years and hot water splashes. They all hurt like hell at the time and stung for some period of time afterwards. I can only think that the time elapsed had some bearing on the creation of my blisters.
Both my wife and I have used wheat bags before with no negative effects and I can think of no other contributing factors. After several days I still have the blisters but there has been no soreness. Strange.
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.
The tobacco giant Philip Morris is suing Uruguay for having some of the best anti-smoking laws in the world, and there’s a good chance it could win, unless we strengthen the fight in court.
It’s a scary reality that one company, whose product kills, could overturn laws that protect our public health. But if our community’s voices are brought into court by a world class legal team, we could fight back with a force no judge could ignore, showing how this sets an unacceptable precedent for the world.
Let’s tell the court that this doesn’t just affect Uruguay — if Big Tobacco gets their way it opens the door for challenges everywhere — companies already have at least 4 other countries in their crosshairs, and many more have anti-smoking laws at risk.
We have to move fast — the court is already hearing arguments. Sign to protect our public health and our democracies from corporate greed — each of our names will be submitted to the court.
My Prostate Operation Was Cancelled – After 3 + hours of waiting.
Well, it’s taken me a while to get my thoughts together after what turned out to be a really stressful morning. Truth be told, I had probably been stressing for quite a few days but had not realised……
As I said in my previous post, we had been requested to arrive thirty minutes earlier than the 07:00 originally planned. This was, supposedly, so that I could have my pre-operation meet with the surgeon and anaesthetist. So my wife and I dutifully presented ourselves at 06:30 in Theatre Admissions and were, almost immediately, shown through to a consultation room.
A nurse arrived, wrote out a luggage tag for my small holdall, and attached a fancier version to my wrist. So far all was moving along quite nicely. Next she started taking / checking my details and very soon I began to wonder what the point of the pre-operation assessment was since all the questions were repeats of Wednesday afternoons interrogation. My doubts further increased when she informed me that she didn’t have my blood details nor my ECG results both of which were part of the Wednesday session.
Already somewhat stressed, in anticipation of the forthcoming procedure, I was beginning to get a little terse. Not just that, but I was also beginning to wonder if they knew what I was in for. A thought that was reinforced a few minutes later when I was invited to get changed. Some of you will remember from my previous visit, for the template biopsy, that I had been given a gown which was way too small and couldn’t be secured. In an attempt to prevent the same indignity I asked for a larger gown. Yet again I was offered a small size. It was obvious that it wouldn’t even fit across my shoulders, let alone do up at the back. Almost grudgingly I was offered a “bariatric” gown. I muttered “whatever that is ” under my breath. Obviously not under enough, as I was informed “oh they are huge !!! “.
As she handed me my bell tent I was asked “what is it you are having done? ” I replied “my Prostate!! “. “Then you should take everything off!!” she informed me.
With that I was left to change. The gown had enough room in it to hold a small disco but at least I could fasten it up. And, best of all, my new dressing gown was of sufficient length to reach the lovely sage green pressure stockings I was sporting. This new vision of sartorial loveliness was finished off by my new suede moccasin style slippers. Now, properly attired, I returned to sit with my wife in the consultation room.
There then ensued a, seemingly, long wait. In truth it was probably only minutes but eventually the anaesthetist arrived and after he had confirmed my details, and repeated many of the questions from Wednesday afternoon, and from earlier this very morning, he ran through what the order of play would be.
For the first time the duration of the operation was mentioned. I had been under the impression that this was to be a two hour procedure. Nope, this was to be four to five hours in duration. Suddenly the first penny, of a whole bag full, dropped and the true magnitude of this operation began to sink in. Five hours!!! He also mentioned that it was possible that the robotic basis of the operation could switch to full open surgery should any problems arise. This had always lurked at the back of my mind and, to be honest, that is where I kept it filed. That is, until the session with the surgeon.
Fast forward a few minutes….
Mr. Wilkinson talked us through the operation and thoroughly explained risks. How little I knew. Over the last couple of years I have reviewed the implications of having this operation and thought that I was pretty well versed. Trouble is, I had been focusing on the post operative time frame. I had not paid too much attention to the detail of the surgery itself.
He, Mr Wilkinson, listed the various risks involved with a radical prostatectomy, starting with how difficult it was going to be to find the little sucker. Especially given the route taken during keyhole surgery, in through the abdomen then turn due south and head for the pelvic zone.
Add to that the fact that the robot has fixed length (but short) arms. I know some folks who are like that when it comes to buying their round in the pub. Next up was the proximity of the prostate to my bladder which introduces a risk of damage over and above the urinary incontinence which is to be expected. Moving swiftly on, next on the list is the proximity to the bowel.
New news here was that the prostate could be stuck to the bowel and that this could have been caused by, if not caused by then exacerbated by, the biopsies I had as part of the original diagnosis and active surveillance regime. At no time was it ever explained to me that the biopsies, TRUS or Template, could have negative impact on future surgery. Apparently during the prostate operation they mighty have to peel the bowel away from the prostate. The biopsies could contribute to any adhesion between the bowel wall and my prostate and the act of separation could cause damage that would have to be repaired. If such damage occurred it would require a colostomy to allow the repair to heal. Obviously, once the repair was healed there would have to be another operation to undo the colostomy. My four to six weeks recovery period suddenly looked to be extending with the possibility of the further surgery and recovery period.
Continuing on with the inherent risks of this surgery, let’s not forget that during the procedure I would be tilted head down by approximately 30 degrees. This would cause my innards to slop towards my head, thereby putting pressure on my heart and lungs. Apparently this is a negative thing.
The coup de grace was the underlying small print of robotic surgery, if they ran into any difficulties, i.e. the Da Vinci machines short arms couldn’t reach, they would revert to the good old fashioned procedure and open me up from stem to stern.
Bottom line for me was that, due to my 18.5 stone (259lb) weight, the risk factors were double the norm.
This operation, and the potential ramifications, was taking on mammoth proportions. And now, the anxiety I was already feeling, was ratcheting up to whole new levels. I really was beginning to feel that I was making a big mistake. But, despite my misgivings I still signed the consent forms.
You may well ask “Why?” Why proceed when I was obviously having doubts.
I can offer no sensible answer. Guilt, Fear, Not wanting to let anyone / everyone / myself down.
After Mr Wilkinson left, my wife said “I fully expected you to refuse to sign that “.
Her statement just added to my anxiety and it was at this point that the anaesthetist returned to ask if I would agree to an epidural. As there was the possibility of my robotic surgery converting to full open surgery he thought it might be a good idea to give me an epidural to help with the pain management.
It was then that I experienced what I can only describe as a “crisis “. It wasn’t that I was crying, there was no wailing and gnashing of teeth, just that my mind was in total turmoil. I was in a flat spin. I really don’t know if I was coherent but I do think I was borderline having a panic attack. I couldn’t answer him. I tried to explain that I was seriously thinking that I shouldn’t go ahead with the surgery. He sat there patiently until I regained my self control and eventually I informed him that he should go ahead with the epidural.
So I was still going ahead. I think that I probably convinced myself that it was normal to have doubts and that I was probably magnifying the issues out of all proportion.
At around 09:00, my wife, took herself off to work and I went to sit with the other surgical victims where I waited for nearly an hour. During this time I was brought a cup of tablets, my antibiotics, anti vomiting, anti anti everything etc etc. And a small cup of water to wash them all down. This was the only drink I had since 05:30. The nurse that delivered them said something that I didn’t quite catch but when I asked she apologised for the long wait and informed me that there was meeting underway to discuss if my operation was to proceed as there was an issue regarding availability of a bed for me after my operation.
Around 10:00 Mr Wilkinson arrived and took me off to a consultation room. He explained that my operation had been delayed due to the beds issue. That he and the other consultant, Mr Solomon, had decided at around 09:30 that the operation was a no go. At around 10:00 the management had given permission for the operation to proceed but by then this was considered to be way too late. The operating list for Friday was morning only, such a late start would mean changing members of the surgical team mid operation and a probable finish time around 17:00. Adding to the risks previously outlined and putting the surgical team under the clock, more so than they would normally be. All in all, not good for the patient, Me! And not good for them.
To say that I was relieved would be an understatement. I had a long chat with Mr Wilkinson about my earlier “crisis” and whether surgery was the right option for me. The net of this was that the reschedule of my operation would be deferred until after Christmas.
To be quite honest,my wife and I are taking this time to rethink if this is the right way to go. Right now it doesn’t seem that surgery is for me.
I think, fate was on my side, that this operation was never meant to be.
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.
Monday was one of the longest days of my life. I was scheduled for a “Template Biopsy” which for the un-initiated is described thus …..
The template biopsy is carried out using an ultrasound probe which is passed into your back passage and samples of the prostate gland are obtained through the area of the skin between your scrotum and back passage called the perineum. The procedure is similar to a trans rectal biopsy which you will usually have had.
Let me tell you, from the recipients perspective, it is nothing like the TRUS (Trans rectal biopsy).
To start with my TRUS was carried out fully conscious by a specialist nurse, the lovely Vanessa. The main difference though is that I was in and out of the hospital within an hour or so. But that was 18 months ago or more.
Mondays procedure was to be carried out under general anesthetic, for which I am truly grateful. But lets scroll back the clock a little.
Early Monday morning, Very early
I was awake, some time in the wee small hours. Either I am worrying about the procedure, or this is the residuals of jet-lag acquired on our return from Oz just over a week ago. Perhaps a combination of both. I checked the clock at 04:00 and thereafter approximately on the hour until I got up just after 07:00. I was not allowed to have anything to eat but was allowed clear liquids to drink and had a black tea around 08:00. The taxi was due to pick me up at 11:30 so I was pottering around in the house killing time. It’s amazing how often I found myself by the bread bin thinking “I’ll just have some toast” or over by the cupboard staring at a packet of peanuts. My last eats had been around 21:00 the previous evening. Going without food for that length of time is not natural for me.
Eventually the taxi turned up, although not at my house but three doors away. Luckily I saw him out there. It could have been worse, the dispatcher at the taxi office misheard my address as Sistine and, had I not corrected him, the taxi would probably have been well on his way to Rome and the Vatican. Still, having ascertained that he was there for me I boarded and we set off. Twice I had to correct his directions back to the main road before I was sure we were going to the hospital. Mentally I was crossing my fingers, hoping that the surgeon had a better sense of direction than my erstwhile pilot.
And so, at 11:50, I checked in at the QA Day Surgery Admissions Reception. And thus began the long wait. It’s a bit like being on a long haul flight, hours of tedium broken up by announcements from the flight crew. In this case there was no food or drink.
After thirty minutes or so I was taken along to a small room. Here I was visited by the anaesthetist who interrogated, sorry, checked my details and gave me a brief summary of what to expect. He also arranged for some initial meds.
Shortly thereafter, around 13:00, a nurse arrived with my lunch. A cup of water and four tabs, 2 x paracetamol / 1 antacid and 1 stop you feeling sicky pill.
While I was downing this feast another nurse arrived, interrogated me again and checked my blood pressure and heart rate. My heart rate was right down at about 55 which I queried but is apparently normal for “someone of our age”. She later demonstrated her own readings which were similar, so that was alright then.
I was then left alone to my own devices. I read for a while, played hangman on my phone, read some more, got up and walked around my room, looked out the window , read some more. Well you get the picture. I believe I even had a nap for a few minutes. The window looked down on the back dock but there was nothing happening down there.
Around 16:00 a yet another nurse informed me that I was Mr. Hodgsons last patient and that I would be seeing him soon. Well I saw his registrar who introduced himself but I have no idea what his name was. His accent, he was English I think, was as indecipherable as his signature on the forms that he got me to sign. He went through the now familiar interrogation, during which Mr. Hodgson popped in, shook my hand and disappeared again.
Oh The Indignity
Twenty minutes later I was invited to go and get changed, by yet another nurse, who led me down to a room full of changing cubicles. This is where all dignity ends.
I am not a small guy at just over six feet tall and way over twenty stones (280lb / 127kg). The nurse threw me a smock and left the room. Needless to say the smock, of the tie at the back variety, did not fit well and I struggled to secure it. Although there was no mirror available I could tell by the cool air that most of my back and all of my bum was pretty much fully exposed. The nurse popped her head in and asked how I was getting on. When I explained that the smock didn’t fit and I was having trouble tying it she assumed a sympathetic air and replied “I shouldn’t worry, the first thing they’ll do is undo it”. I then settled down to fight with the compression stockings which when battle was over were rolled up to just below my knees. Wonderful!!
So there I am with my pale blue smock reaching from just below my chin, down to about two inches above the knee. Struggling to meet my sage green stockings, some two inches below my knees. All with my bum exposed to the rear.
The epitomy of sartorial elegance ? Nope, not a pretty picture.
Not to worry, I thought, I have my dressing gown which should bridge the gap. No such luck. To make sure that I was all bright and shiny for the hospital, my wife had washed and tumble dried it. I hadn’t worn it until now and yes, you’ve guessed, it had shrunk. At least it still closed at the front but the length was a sadly lacking being just a tad longer than the hospital smock. At least my back & bum were covered and therefore a little warmer.
I gathered my stuff and found the nurse, who then gathered up another guy (John) and led us through the hospital. Imagine my feelings as we passed through the first doorway into a public waiting area. I’m dressed like a freak and as we entered the waiting area all heads turned to see who had arrived. I thought later that it must have looked like me and John got dressed in the dark and swapped dressing gowns. His gown reached from neck to ankles and wrapped around him properly while mine was way too small. So, we made it through the waiting area without the gales of laughter I was expecting. Next we traversed the hospital to a stairwell where we descended to the floor below and were left in a new waiting room with one other guy and a TV. Here we waited for what seemed like ages but must have been about thirty to forty minutes. John and the other guy got the call and then eventually so did I.
Kim, not sure if she was a nurse or a doctor, arrived to lead me to the Operating Theatre suite. Once again I had to traverse the hospital through the public corridors and climb to the upper floors via the stairwell. At this point a cold draught, not Guiness, reminded me about the negative aspects of my attire as I climbed the stairs. The stairs with the open railings to the centre, the railings that gave a not so glorious view of my nether regions to the several people descending these same flights of stairs. One glance up by any of them and they would be scarred for life.
On arrival I am sat in another waiting area, just for few minutes, but my apprehension levels are rising. This is not how I imagined the process would work. All this walking and waiting followed by more walking and waiting. And then an assistant anaesthetist comes and interrogates me one more time and I am on my way. One more surprise was that I had to walk into the theatre and get on the table myself. A green bag is held out for me to dump my shoes and dressing gown into. As I take off the gown a nurse rushes across the room to shut the doors to the outside, to prevent my blushes or those of any outsiders I’m not so sure. Then I am on the table.
And They’re Off
When I entered the theatre there was a group of folks gathered in the corner. Presumably they were in a pre-scrum huddle discussing my procedure. Or maybe they were just discussing Pompeys abysmal record. As I hop on the table I suddenly become the centre of a hive of activity as the anaesthetist and his assistant close in to prepare me. Cannula in the back of the hand, heart monitors etc. then the anaesthetist is telling me that I will feel a coldness in my hand as he injects the first of two concoctions. I felt nothing and then he informs me that I may feel a little dizzy. I’m staring at the ceiling and the light panels suddenly seem to displace and the next thing I know is a voice over my shoulder is speaking and inviting me to cough.
I open my eyes and I am in a different room, apparently job done. This is like taking a shot with an SLR. You look through the lens, focus, shutter release, view goes blank as the mirror lifts, then the view is clear again when the mirror drops. All in the blink of an eye. I’m not feeling dopey or dizzy, just wide awake. Once the nurse is happy that I am OK I am wheeled through to a recovery area.
As I enter the new waiting area I pass John and the other guy from the pre-op waiting area. They are sitting up in their respective beds eating toast which they both wave at me.
After a short time and a cup of water I was invited to get dressed and was led outside to a seating area. The nurse asked if I had eaten anything or had a drink to which I responded “No”. I was offered coffee or tea and I was expecting toast but was in fact offered eggy or corned beef butties. John was already out there so I sat alongside and we compared notes as he had the same procedure. When my coffee and butties arrived he was rather envious since he was only offered toast and like me he loves corned beef. My wife was brought in and she eyed my butties hungrily too. She had been waiting outside since just after five and, as it was now gone seven, was very hungry.
The purpose of this little tea party is to ensure that you are OK, that you can keep down food and drink and most importantly that you can have a pee. If you can’t keep your food down or you don’t make water they won’t let you go home. Worst still an inability to pee can mean catheterisation and / or an overnight stay. Luckily I was able after a short while to produce a dribble. Oh but it burned. I’m guessing that I was catheterised during the procedure although nobody said.
Anyway, based on my meager performance I was allowed to go and my daughter came and drove us home. Once home it was more tea and everyone seemed amazed, not the least of which me, at how alert I was. Also that I was in no pain. Well apart from when I had a pee which I was having to do with ever-increasing regularity.
Today, Wednesday Morning
Well the good news is that I have not had any pain. Two nights sleep, although still not sleeping all the way through so blaming the jet lag.
It is now nearly forty-one hours since the procedure. Any residual pain blocking by the anaesthetic must have worn off by now. The burning sensation has all but disappeared and I have a slight soreness in the perineum, like when you have a bruise, which only makes itself known when I sit on something hard.
Now I have to wait for approximately four weeks to hear the results. That brings us to Christmas week I think, so it is likely that my appointment will be after the holidays. We shall see.
Some of you may have read my previous post on this subject. I realise that I left it as something of an open-ended, cliff edge item. I had intended to follow-up fairly quickly with the following but for some reason I found I couldn’t seem to find the time ??? Yet I managed to post on other matters. Go figure.
Since I am on the cusp of the next stage I felt I should bring this up to date, so here goes.
18 Months ago (or so) ….
….. after informing me that I did in fact have Prostate Cancer, Dr Hodgson proceeded to give me the details. The results of the biopsy and so forth. I think I am taking it all on board but in reality the enormity of my situation is quite overwhelming. Its only when he gets up and leaves the room in search of some leaflets that I really feel something. I’m not sure what it is but I have the sensation that something has just come down over me, like a sheet sliding over me. Not heavy but just there.
Dr Hodgson returns and we talk over things for a while longer. The net of this is as follows:
My biopsy has shown that I have Prostate Cancer, this is not good news, however you look at it.
I have a Gleason figure of 6 (3+3) 1% on the left side & 7 (3+4) 8% on the right side. This is relatively good news. Gleason figures in the 1 to 5 range are better. It is later explained to me that 3+4 is better than 4+3 even though they both add up to 7
I am 60 and, apparently, this is a good thing too as, with a following wind, I have maybe 30 -35 years ahead of me.
My options are :
Surgery – Whip it out and chuck it away
Radiotherapy – External High Energy X-rays
Radiotherapy – Brachytherapy (Nuclear bullets)
Active Surveillance – Regular 6 monthly blood tests to monitor the PSA levels and an annual biopsy unless something changes.
The last was not offered as an option and I had to ask if it was available because I had read about it on the web. Dr Hodgson said that it was an option but he hadn’t offered it as at my age it was more likely that I would eventually have to take one of the other options.
So, I pondered a while then opted for option 4.
My main reasons are a strong fear of people cutting in to my bod. Well that one aside I am also concerned about possible side effects of surgery. After all the Prostate Cancer, isn’t causing me any pain or other symptoms at this time. Whereas, surgery could introduce me to a few negative issues. i.e. infection and damage to surrounding body parts including the bladder. Both of the Radiotherapy options come with potential negative effects which include bladder control which I am not about to give up just yet.
Nope, on the whole, I preferred the idea of Active Surveillance. And that is what we have been doing for the last eighteen months or so. Every six months or so I have had a blood test to measure the PSA and after each test I have had an appointment with a consultant. Each test, other than the last, has shown a slight increase in the PSA. The last showed a 0.1 decrease which in my book is negligible. At the last consultant review we discussed that part of the Active Surveillance regime is a regular biopsy.
And here we are. I am about to go into hospital for a “Template Biopsy”. Instead of grabbing their samples via the back passage, using an ultrasound probe with local anaesthesia, they will knock me out with a general anaesthetic and take many samples using a “template” grid to give them a more accurate idea of what is going on with my prostate. These samples are taken through the skin between the back passage and my undercarriage.
Personally I am really pleased that this will be carried out under GA.
So there you have it. I am about to go into hospital to be shot blasted in the gusset region with 20, 30 or 40 needles.
I will update you on how I get on, if and when I am able to sit down again. And here is a pretty flower for those of you traumatised by the idea of a template biopsy.