So to Friday 19th July 2019, and I’m up at just after six o’clock in the morning. A cup of tea and two slices of toast and marmalade were consumed by six-thirty. For the rest of the morning I was on green tea; it was either that or water. I packed my bag, just a pair of slippers, a dressing gown, a spare pair of pants and a ST, and a book to read, along with my paperwork for the day.
We left just after eleven-thirty and reached the hospital in good time for my 12:00 signing-in at Day Surgery to see the Colorectal Surgery Team. It seemed a bit chaotic to be honest, as there were people waiting to collect the morning patients along with those of us waiting to be admitted for the afternoon session. We waited for about 45 minutes before Cathy agreed to leave and go and do her shopping, after which she would wait at home for the call to come and get me, whenever that might come. The walls were covered with signs saying “no eating or drinking”, as the patients weren’t allowed prior to surgery, and it would just be cruel if their family/friends ate or drank in front of them.
Not long after Cathy had gone, a nurse called me through, and she sat me down to go through the first ream of paperwork they had to complete before they could knock me out and allow a surgeon anywhere near me. It detailed what I was there for, which was “EUA and biopsy”. I didn’t know what EUA meant, and neither did she. I found out later, it is Examination Under Anaesthetic – obvious, I suppose. She detailed my current medication, previous history, any issues like allergies, the usual stuff, and then she put the wristband on me to make sure I was the right person for the job. I told her about my sweats, which are spontaneous awake or asleep, and which also seem to raise my blood pressure when they are coming on. I also told her about my knee, because if they were going to manipulate me into any old position while I was asleep, I didn’t want them to damage the fragile healing I had managed so far.
Then she took my blood pressure and temperature, both of which were happily normal, and then she measured my ankle and went off to get me a pair of flight socks. They are a fetching Wehrmacht Field Grey, with that greenish hint, and come up to just below my knees. I am to wear them for the next 48 hours, only permitted to take them off while I’m in the shower. They are called “Fitlegs”, and in my long shorts I look like the worst ever Payne Stewart impersonator.
I was sent off to the changing room to get into my hospital gown and dressing gown. I managed to lean on the alarm button on the wall as I was getting out of my shorts, and a nurse who was clearly used to such clumsiness came along to reset it. Then I was summoned to see my anaesthetist, and I warned him about my sweats, so that he wouldn’t get alarmed if I went off on one under his care. Apparently I was expected in theatre at about two-thirty, and went to wait in the male waiting area until then.
Then a sweet pretty little blonde woman in the ubiquitous maroon theatre scrubs, looking like she was barely out of school, called me in to speak with her. I assumed she was another of the nurses, and I thought I did really well not to come over in any way as patronisingly sexist when she informed me that she was my Colorectal Surgeon. It has been long established that police officers are contractually required to get younger as we age, but this was on a totally different scale. Anyway, I made sure I told her about the sweats and my knee, as I thought too much information to the team would be better than too little. She knew about my MRI and CT scans, and was the only person to mention them, but she didn’t offer any context of the results. Finally she got me to sign my consent form, which had the purpose of the surgery (“intended benefits”) listed as “diagnosis of lesion” and associated “serious or frequently occurring risks” listed as “bleeding, pain”. Nice.
At about 2.20 I was escorted along a long cold corridor to the theatre of dreams. The maroon covered figure beside me told me they keep it cold so that they get on with their job more quickly, a productivity incentive tool. He continued the dry humour when he got me to lie on the table, which was particularly cold against my bare back, telling me that everything in the theatre was either cold or sharp, or both. Then he stuck a cold sharp thing in my left hand, the cannula finding almost exactly the same hole that the CT scan had used only three days earlier.
The anaesthetist squirted something into the cannula, and I felt a cold trickle running up my arm. Then he put a mask over my nose and mouth and told me to breathe deeply. Then I was in the recovery room and a nurse asked me if I wanted a cup of tea and some biscuits. Of course I did.
She raised up the head end of the bed so that I was sitting more than lying, and very quickly brought me a mug of tea and a packet of three custard creams as well as a packet of three fruit shortcakes. Brilliant. I actually felt pretty good, no pain, no discomfort, and almost fully alert. I could feel that there was a padded dressing on the surgery site. Apparently it will come away “when opening bowels”. The tea and biscuits went down in double quick time, and then I was just sitting there waiting for them to decide that I was well enough to be wheeled into recovery room two.
In recovery room two I was given another mug of tea, and a ham and tomato sandwich.
They told me to get dressed, and in recovery room three I was given another mug of tea.
The plan is to get you hydrated enough to go for a pee. Only after you have been for a pee will they telephone your contact person to come and collect you. Cathy finally got the call at about 5.30pm, and I was out of there by about 6.15pm, once we had been given 48 hour care advice. I am not allowed to use a kettle, not allowed to use a vacuum cleaner, not allowed to drive, not allowed to drink alcohol, not allowed to use a dishwasher, not allowed to… and so on, including not allowed to take my socks off, for 48 hours.
In terms of the result of the day’s efforts, my discharge sheet simply says “they will get in touch with histology results”. One of the nurses earlier in the afternoon had estimated about a week and a half, the Tuesday after next. All I can do now is wait.
Of course the first bit of waiting to come to any sort of conclusion was waiting for the dressing to come away “when opening bowels”. As if it was ever going to come away of its own accord. I don’t know what tape they used to keep it in place, some sort of surgical grade gaffer tape with superglue backup I think. When I gingerly and painfully removed it the next morning it took hairs away from places I didn’t know I had hairs. Which I suppose I don’t have any more.
So to the waiting long-game. The week immediately after the biopsy was hot. The record UK night-time all-time high temperature was set overnight on 23/24 July. If “normal” people were sweating, imagine how it was for us Prostap boys. Rivulets streaming down my face, my arms, my legs, my back, my chest. Running down from my hair it was stinging my eyes and dripping, literally dripping, off my nose. And sometimes it was an almost hourly event. My clothes were pretty well perpetually damp. You might think “but aren’t you used to that by now?”, and yes, I was, I am. That doesn’t mean I like it though! There was a need for plenty of fluids as well as rehydration salts, sometimes twice a day.
On Britain’s hottest ever day – July 25th – I played walking football from 11:00am to midday. When I got home and went to the bathroom to have a shower I looked at myself in the mirror and had to do a double-take as I noticed a real oddity. There was a fine line of white along the very tips of my eyelashes. Salt from my sweat had dried onto them. Some women (and men, I guess) would pay a fortune for that look. Of course it washed off as soon as I stood under the shower.
But, and this is where it gets scary and doubts set in, my “tolerating the sweats rationale” has been that every sweat is a victory over the PSA, a reduction in the score, by however small a fraction, and a step towards a cancer-free status. Now I’m waiting for a biopsy result on something that has appeared following my initial treatment for cancer. You have to wonder if there is yet more cancer wandering about my body, and that in turn makes you wonder if all this discomfort from the sweats is going to be worth it in the end. I am growing impatient to know the results from the biopsy, especially as in amongst all this I’ve had to book myself in for the next Prostap jab in three weeks’ time.
And then suddenly the Tuesday after next has been and gone, and after Cathy moaning at me for spending most of that Tuesday after next looking at my phone in case I had a missed call, I am none the wiser about my biopsy. It set me wondering about how “they” would contact me.
I guess it might depend on the results. If it is malignant “they” might just invite me in to the hospital for a consultation. You’d hope they wouldn’t just ring you up and say “Hi Stew, bad news mate…” If it is benign then I suppose “they” will also invite me in to tell me how they intend to treat it. Of course the complication is that any decision has to be taken in consultation between Colorectal, Day Surgery, and of course Oncology. I wonder if a malignant result would be left to Oncology to be the “they” that contact me. In which case I might not hear anything until my scheduled appointment in just under a fortnight. But I’d like to think not.
It turned out slightly different. It was a phone call from one of the nurses at the Colorectal Department on the Wednesday after the Tuesday after next, to say that it isn’t cancerous. As far as they can tell. In the next breath she tells me that it is definitely precancerous, which means that if it is left to its own devices it will be cancerous in time. Apparently I have an AIN3. I say “apparently” as they want to do another biopsy just to make sure they are dealing with what they think they’re dealing with. The surgeon, a “Mr”, is on holiday and not back for three weeks. They (and it turns out that “they” is the Colorectal Department) will write to me with an appointment when he gets back. And they will give me another, new, pair of flight socks.
Needless to say the moment the phone call ended google was under interrogation. Not content with a modest AIN1, or even a perfectly satisfactory AIN2, oh no, I have to get greedy and go for the full AIN3. It is basically the final stage before it gets nasty. The growth is across the full depth of the bowel wall, so “proper” surgery will be necessary, and I’m guessing that after it has been done I won’t be sitting down much for a while.
Let’s see what the Cancer Research UK website has to say about it: Anal Intraepithelial Neoplasia (try saying that when you’re sober, never mind any other time!) means there are abnormal cells in the lining of your anus. A pathologist looks at your cells under a microscope to check whether your anal cells look different to normal anal cells. It is not cancer but the cells might develop into cancer in the future. Most AIN cells start in the skin around the back passage (perianal skin), but they can also be found inside your anal canal.
Then the CRUK website has a pretty diagram before continuing to say that: High grade AIN (AIN 3): AIN 3 is also sometimes called carcinoma in situ or stage 0. You will need treatment because the abnormal cells are less likely to get better on their own. You usually have surgery to remove some of the skin around the anus. So actually I have got something that could sometimes, but not always (for some reason that currently escapes me) be called anal cancer, but at stage 0. As far as they can tell from the first biopsy.
All of which means that when I go to see my Oncologist on 12th August, the second biopsy will still be some time in the future. And the future is something that is so complicated, if only in the planning ahead sense. As a normal human being you want to just get on with things and try to enjoy life. So I have booked a golf trip to France for October. I hope I’ll be able to sit in a buggy bouncing around a golf course by then.
Not that sitting is much fun by now, as I am almost permanently aware of the growth in my anus. There is a dull ache reminding me much of the time. I have learned more about life though, in that while Red Bull might like to think it gives you wings, Always Ultra definitely does give you wings. The padding protects my clothes and bedding, but swells up and feels lumpy when it is soaked by the sweats, and there are only so many opportunities in a day for you to change them. The leakage doesn’t make for a good experience, and the regular summer sweats are definitely exacerbating the problem.
So to the visit to my Oncologist on 12th August. In preparation for seeing her I have to have a blood test, and on 8th August I arrived at the hospital at 7.52am to get the test done and be home for break fast (and I mean breaking my fast, over 12 hours of it, not simply breakfast!) as early as possible. I was amazed to find that I had parked the car, waited for my number to be called, had the vampire session, and returned to the carpark payment meter all within the fifteen minutes “drop-off” allowance, so didn’t have to pay the usual £2.00 parking charge. That’s efficiency and value for money for you!
The efficiency continued when I went to see my Oncologist on the Monday. I took my waiting room code (T53 today) and sat down. Preparing for a lengthy wait, I tried to log onto the hospital wifi, but the T53 call came up before I could complete the process. Then I was weighed (91.25kg, slightly down on last time, but still 2.25kg more than when I first arrived 60 weeks ago) and blood pressured (all normal), by which time my oncologist was ready and waiting for me.
Great news on the PSA front was that I was now down to 0.5. I had been hoping to hear “Nought point anything”, so the “five” was brilliant to hear. The sweats are proving their value. All other blood readings were normal, which is also good news. She also told me about the scan results. The MRI and CT scans showed nothing cancerous at all around my pelvic region. However the MRI had showed up what they think is a radiotherapy-induced cyst on my prostate. She said that as it was so rare for anyone to be re-imaged following completion of radiotherapy, she didn’t know if this was a common side effect or not. Either way she didn’t seem too bothered about it, and I’m just thinking of it as a radiation burn mark where they had been so precise in their targeting.
Then she asked about the biopsy, what had they told me about it? Of course she knew the answer, but wanted to be sure that I was on message. I explained, she agreed, I was on message. She looked on the screen and it told her they were planning an ERUS. She didn’t know what that stood for, so for her own (and now for everyone else’s) benefit, she googled it. Endorectal ultrasonography. So an ultrasound scan. Basically that would help them plan the surgery, identifying the exact dimensions and shape of the AIN3 they are intending to remove. Seeing as the Colorectal Surgery Department is not the Oncology Department, she didn’t know if they would carry out the scan and then immediately operate, or if it would take two appointments.
Colorectal Surgery will write to me to let me know when I should attend, but she said that if the discomfort of the AIN3 gets worse I should ring them for advice. Oncology, however, don’t want to see me until 4th November, although I do have the minor inconvenience of the Prostap jab tomorrow afternoon to remind me of them until then.
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