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 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.
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.