That wasn’t the message I wanted to hear. And it certainly wasn’t the message I expected to hear. Chemo is a horrible experience, and from the myths and legends we’ve been fed we know it’s meant to make the cancer weaker, not stimulate it. Nurse Cathy is worried that I’m getting depressed; I’m worried that she’s struggling to handle it. It’s not a good place for either of us to be.
Anyway, not having much choice, I have started on the new treatment regime. The first thing that strikes me is that my spell-checker recognises both ‘enzalutamide’ and ‘bisphosphonates’, there are no red wiggly lines under them querying my spelling. The post brings me a letter promising a telephone consultation on 10th August, so that means bloods on the 8th or 9th I suppose. I’ve even started taking my blood pressure, and currently it seems to be on the low side, roughly 100/70. I’m on tablets to reduce my blood pressure (amlodipine), so maybe I’ll need to come off them and see what happens; keep a record of it, as ever. A week later and it’s 148/80, but that was early evening after a few cups of coffee. Another morning one as I close in on the first four weeks of enzalutamide and I get 123/80, nice.
The hernia is playing up, not that it’s all that big or causing me much pain, more just where it is. It has created a weakness in the adhesion of Zeppy’s bag to my skin, as the dip into my belly button is more pronounced. This means that there are wrinkles at the edges of the ‘wafer’, which means that I am beginning to get a few minor leaks, so I’m using ‘flange extenders’ to give me a better seal. Zeppy too seems to be getting bigger and more unwieldy, making bag changes more difficult. And the alleged side effect from the radiotherapy means that if it leaks, it really leaks – no lumps!
The enzalutamide has increased the frequency and dampness of the hormone sweats for me already and it’s only been a week. I’ve currently got no idea what the bisphosphates are likely to do to my equilibrium, because the consultant hasn’t emailed the GP yet. Right now, things are not all that good overall. I can’t even exercise properly as my knee is taking ages to heal, but thanks to a buggy, I manage to get around the golf course. Playing golf is far more exercise than it should be… too many shots, too much time wandering about in the rough seeking out my golf ball.
Then I get a text message from the GP. The bisphosphonate I’ll be getting is the weekly one, called alendronic acid. So now I have to drop one of these acid tabs once a week. Along with that I get a calcium/vitamin D3 supplementation tablet that I have to take twice a day. It’ll all be waiting for you at your local chemist. We’re gonna need a bigger medicine cabinet. But not yet, the alendronic acid won’t be in until tomorrow, but my twice daily Calceos chewable (chalkily crunchable more like) tablets for calcium and vitamin D3 are there.
Meanwhile, I chase up on Facebook groups about this alleged radiotherapy delayed side-effect, and it appears indeed to be the case. It seems it is called, imaginatively enough, ‘Late Effects of Pelvic Radiation’. There may be a ‘late effects specialist’ nurse in oncology, or it might be worth me following up with the Pelvic Radiation Disease Association. The bad news from responses I’ve had is that it seems to be chronic – perennial – perpetual – incurable. A challenge then; thanks Mister Grim Reaper, I haven’t had a challenge for a while.
Next up is my invitation to go and have a shingles jab. I had shingles in 2010, a nasty rash across the back of my neck and shoulders, and it was horrible, with a sensation of water trickling down the back of my neck when it was perfectly dry. So I’m keen to get that one done. The jab is a present the NHS gives you for hitting seventy. When you’re a little kiddie and you get chicken pox, you go spotty for a while, cry a lot, then just get over it. And while that’s not nice at all, the legacy in your bloodstream is the adult version called shingles; at least I hadn’t cried with the adult version.
Meanwhile the bloods are coming round already. Monthly for the first three months, with the oncologist phoning me afterwards. So for the first call, what have I noticed since I’ve been on enzalutamide? I do get some quite itchy moments on my torso, but not a rash, which is one of the fairly common side effects. The sweats are a bit more frequent and annoying. Cramps in my legs at night again, so I’m on the electrolyte replacements again when I remember. And drowsiness. It’s a bit like the chemo brick wall, but not as brutal. I can get on with lots of things for quite a bit, but then I have to go and sit down. But an hour (or less, depending on the quality of the cuppa) later and I am back to work again.
The diarrhoea has reduced, and I’m getting much firmer product, although there is still some sign of sloppiness in Zeppy’s bag as well. Maybe the ‘Late Effects of Pelvic Radiation’ aren’t as bad as I feared, and approaching the Pelvic Radiation Disease Association can be shelved for now? Peripheral neuropathy is still irritating my toes, and both the tamsulosin and the cyproterone don’t seem to be as effective as they were, peeing more frequently but less volume, and sweating more noticeably.
Hmmm… interesting. The telephone call was a little earlier on Friday than I expected. It was the lady doctor this time. I basically managed to cover the above two paragraphs from my end of the conversation. From her end of the conversation, my bloods were all good, including electrolyte levels, my weight was stable at 12 stone 4 pounds (she didn’t ask about the blood pressure, but that was OK anyway) she was happy with what she was seeing on the screen. Then she told me that my PSA had gone from the shock that was 98.2 four weeks earlier to 72.4, and I really couldn’t believe it.
I mean, 72.4 is still a pretty crap PSA score in anyone’s book, but for it to have dropped by 25.8 in less than four weeks is phenomenal. Wow, to hell with the sweats, to hell with the lethargy, and sod you Grim, I’ll keep taking the pills. She wanted me to confirm if I was willing to carry on with the enzalutamide, and if so there’ll be another lot waiting for me on Monday. Of course I was willing to keep on taking it, I’ll be in the pharmacy to collect them on Monday. I was straight on the phone to Nurse Cathy, and she was delighted; she’d been very nervous about the result. A happy phone call. We go again in another four weeks.
So to Monday, and Hazel our foot-care professional came round. We chatted about my PSA, as I had posted a snippet on Facebook. She said that a relative of hers had been on the same enzalutamide tablets and his PSA was effectively zero in well under 15 months. Apparently when he started on it, it was an experimental drug, and cost about £4,000 per month. She also said that he had become quite effeminate in his mannerisms and suffered the sweats quite badly. Rocks and hard places abound, do they not?
After Hazel left, I googled enzalutamide. “The cost (list price) of enzalutamide is £2734.67 for a 112-capsule pack of 40 mg enzalutamide. The daily dose of enzalutamide is 160 mg and costs £97.67 per day. The company has agreed a patient access scheme with the Department of Health.” There’s a possibility (probability?) that they’ve negotiated a cheaper rate for the NHS since then, I would hope. Anyway, I popped down to the hospital and collected my next four weeks’ supply.
Then the phone rang. It was the hospital; I wondered if they wanted their expensive drugs back. But no, Mack the Knife wants to see me. He’s got a surgery date for me if I want to accept it. Ten days from now. Pre-op day is this coming Thursday. Wow. Brilliant. 2.30pm for the ECG, 3.00pm to meet with the nurse. Do I want to accept it? “Do I want to accept it?” – of course I do. I’m falling back in love with the hospital. I think maybe Grim Reaper might have moved on to pastures new, looking for another person to victimise; but probably not, just off on his summer break.
So to the Thursday before the Thursday of surgery. Pre-op checks. Because it was all at such short notice, I hadn’t received any letters or forms, which meant that my 2.30 at the ECG was a washout. Go and see Colorectal and get them to complete the request form. Which meant that I was early at Colorectal, who were, inevitably, running late. Eventually I got summoned in to see the nurse, and she went through a massive checklist with me, making notes here and there, but mainly ticking boxes. She also did pulse, blood pressure, and sounded my chest to make sure I had both a heart and a couple of lungs in good working order.
Once that was completed, she gave me six bottles of pre-op drinks (as expected), along with various leaflets. Finally, I was given a form for the ECG, and I trotted off down there again. The wait wasn’t very long. The nurse stuck her sticky things on my legs, arms, and chest, before clipping the spaghetti plateful of wires in bewildering sequence onto them and asked me to relax and breathe normally. Then it was over for the day; next hospital visit is a week away, be there as instructed by the nurse for 7.00am.
Except that on the Saturday after seeing the nurse I got my appointment letters through, with not only the original form for the ECG and where and when to meet the nurse for my pre-op, but also when and where to turn up next Thursday – at midday! Seven in the morning or midday? Looks like a Monday morning phone call to check! Yep, just as well I rang. They’ve had another cancellation, would I be able to come in at 10.00am instead? That would be fine. Fasting from midnight.
On the Monday I had played golf, badly, as I was conscious of the hernia in spite of the support belt, and by trying to compensate for that I tweaked a back muscle which made it even worse. My golf buddies asked me what the very expensive enzalutamide was about, what it was like. I’ve refined my reply now: it is “chemo lite”. It’s as if I hit a soft-play wall and have to sit down for a cuppa, that’s all the recovery I need. Not like chemo where I hit a brick wall and that was me for the day. And no hair loss, just the cramps in my legs at night. Oh, and the sweats, mustn’t forget them.
Now to get my drugs up together to take with me to hospital: 1x Calceos every morning and evening to be chewed and washed down by a glass of water, 4x enzalutamide every evening, along with 1x tamsulosin, 1x amlodipine, and ½x cyproterone. And 1x alendronic acid tab on Tuesday morning if I’m still in by then. The tab has to be washed down with a glass of water, and I’m not allowed to lie down or eat or drink anything except water after I’ve taken it for at least half an hour. I’m hoping that my GP will authorise an increase in cyproterone to 1x daily to help counteract the Prostap plus enzalutamide sweats; half a tablet was doing fine against the Prostap but is losing against the combination of the two.
Then I get a phone call the day before – “we’ve had another cancellation, can you come in for 7.00?” Why not? We know the routine, and Cathy dropped me off at about ten-to so that I could make my way up to the waiting area. There was a surprising number of us there, all in for different things I suppose.
Through the door, get changed into the gown and put your dressing gown on over it, slippers on your feet. And wait. Mack the Knife came in and took me into a side room to explain what he was planning to do. I knew about the tennis racquet shape of the wound, but he explained that he would be putting a special mesh in between layers under my skin, between the thick layer of fat and the muscles – “Thick layer of fat? Do you mind!” – to hold everything in place. The big fat base of the prolapse would be cinched in tighter by him cutting four little triangles out of the skin at N, S, E, and W, and then sewing them together to reduce the circumference; neat solution. The stoma would then fit neatly through the hole in the mesh.
Then back to waiting… if I was taken to complete one lot of medical information forms, I must have completed a dozen… well, that’s how it felt. I think it might have been three; OK, at least two. Finally, they came to take me into theatre. The usual routine, lay down on your back, cannula in arm, liquid injected through it… you might find your vision spinning a bit…
This time I wake up in Enhanced Recovery. It’s a cute little side-ward that had up until recently been a children’s ward. There are stickers from ‘Finding Nemo’ all over the walls. No, I am perfectly wide awake, honestly, it really is like that. Kind of sweet really. I know I’m wide awake because it hurts all across my abdomen. Sitting up, rolling slightly to one side, moving myself up the bed a little, they all hurt like hell.
I’ve got the anti-DVT pressure pumps on my calves, which means that I can’t get out of bed unless a nurse comes to release them. My bladder seems to be taking great exception to this restriction, so I ask for a bed-bottle. I just have time for the one and only rendition this time round of stroking it and saying “So Mr. Bond, we meet again” (which gives the nurse a good giggle) before I have to rapidly make use of the thing under my covers.
Oddly enough, I had a pretty good appetite at this point, and when the evening meal came around, I polished it off with relish. Cathy visited and was pleased that it all seemed to have gone so well, and that I was in quite good spirits. Tired, but relaxed and content. I had a clear stoma bag over a very bloodied Zeppy, and there was the scar showing from the hernia eviction to clearly see some of the glue-covered stitches from that heading in towards the stoma. Further left was a drain hanging out of my tummy to a concertina that when squeezed in turn fed a bag. The drain bag looked like a freezer bag when you’ve defrosted a steak, with a watery dribble of blood in it.
It wasn’t a good night that night. My bladder was giving me grief. I got through three of those bed bottles full. When Mack came to see me in the morning we had quite an entertaining time. First up, purely by chance, he caught me reading “Sh!t Bag”, a YA (apparently that’s ‘Young Adults’) novel about a girl who had had to come to terms with having a colostomy bag at about age 16/17. Lots of First World problems for her. Mack thought it was hilarious me reading a book with that title.
I told him about my bladder’s performance overnight and going into the morning. Apparently, I’d been loaded up with saline drips during the operation, so as well as being expected to drink lots of water my body had a lot more to get rid of. However, he said for me to have a bladder scan and a catheter to sort it out. The scan told them that I still had 900ml in my bladder, which I think is quite a lot.
The nurse from Urology, identifiable by the “Urology Trolley” that she was pushing along, struggled to get her first attempt in through my urethra, but a firmer tube met and pushed through a bit of a blockage before settling into place. The relief was almost instantaneous. Now I could carry my two drip bags and go and brush my teeth and generally freshen up, but not before my leg pumps were detached first.
I was keen to get up and active as much as possible, so after a bit of a lie-down following my wash and brush up, I got up again and walked from my end of the ward to the far end of a (let’s be honest, short) corridor. “I’m mobilising.” I said. I did three laps of there and back before settling back into bed and having my leg pumps re-attached. The worst bit was getting in and out of bed, bending or twisting burned sharply.
They fed me laxatives to keep the poo nice and soft so that the newly formed stoma could cope with what was coming through. You know when you lie back in the bath and blow bubbles across the surface? Well that was exactly what my motions sounded like; more liquid than anything else. But the stoma nurse came round later in the day, and she changed the bag, which revealed that there was already some substance coming through. Still some blood as well, but the stoma was working. She put a black stoma bag on it after she’d given it a delicate clean, which was different. She left me with about half a box-full of stoma bags as well as a new supplies bag which included dry wipes, a pack of disposal bags, a can of release spray, some new scissors, and a new radar key. As well as those goodies, she also left me with a template to cut my own flanges to size in future.
So that was basically it for Friday. Cathy came to visit late morning and early evening. With the catheter in place, and the ward being incredibly quiet, I did manage to get off to sleep far more than I’d managed the previous day and night. There were only two of us in there, with two staff. In fact, the ward would only have held a maximum of six beds. But it wasn’t completely quiet as the staff were regularly being called on to juggle the beds in other wards.
Saturday was relatively quiet as well. It was a Bank Holiday Weekend. I got the impression that the number of cancellations was probably linked to that, but also from the bed-juggling nurses who were on the phone at the foot of my bed, that there was quite a surprising number of empty beds across the hospital. One of the doctors came and took a blood sample from me, and apart from Cathy’s visit, that was about the extent of the excitement for the day. The catheter bag got emptied regularly, the drain bag stayed at more or less the same small amount.
Then came the evening, and I really wasn’t surprised when they moved me onto a main ward. They shut down the cute little kiddie’s ward, moving both of the patients out. My leg pumps got left behind as I was mobilising quite nicely by now. I texted Cathy to let her know where I was, and she visited later in the evening. They put me in a ward with five other men, a sub-ward of a bigger ward. The sub-ward was next to the entrance to Surgical High Care, so I was nicely familiar with the layout of the loos and shower along the corridors.
As you can imagine, being surrounded by unhappy old men wasn’t really as enjoyable as it might have been. One, in the bed opposite me, was a dementia patient, but he kept looking at me with a twinkle in his eye that told me that he wasn’t completely gone. He was mischievous, some deliberate misbehaviour in among the genuine problems. And he knew that I knew. I saw him deliberately throw his pillow off his bed onto the floor; our eyes met. Attention-seeking, but I didn’t say anything, he looked like he needed his little victories.
The catheter came out on Sunday, and thank goodness the constant drip seemed to have been resolved, and I could do without the bed bottles. I hadn’t slept under the bedsheets at all since the catheter had been put in, my sweats were keeping me quite warm enough thank you. The whole of Sunday was just a case of waiting for someone to make a decision about sending me home. The wide assortment of meds was issued at regular intervals.
The food options became worse and worse, it was almost as if they were saying that if the doctors won’t send him home, we’ll drive him out through hunger alone. On Monday morning they took my lunch option. The ward round was pretty positive. We’ll get your discharge papers ready; you’re going home. Monday lunchtime they didn’t have the food option I’d ordered, then they asked what I wanted for the evening meal. To be fair we didn’t know when the discharge paperwork and accompanying meds would be ready, so I ordered. I told them that if it went on to Tuesday breakfast, I was going on hunger strike.
But I needn’t have worried. Just before 5.00pm my paperwork and a huge bag of meds (mostly Movicol laxative) arrived by my bed. I rang Cathy and got myself dressed. I had to go ‘commando’ because we’d forgotten to bring a clean pair of pants in, and Cathy had taken the original pair home for washing when the catheter had gone in. Home at last.
Cathy won’t let me do anything. Anything. Although to be honest I’m so drugged up on painkillers and pain that I’m not inclined to do much anyway. So, I tend to just sit around, or occasionally lie around and try to find myself a position where the wounds don’t hurt. And then without moving, they do hurt again, then they don’t.
The NHS get in touch with me. Mack wants to see me, as promised, but not until 26th October. Go in to see the stoma nurse on 12th September. Then I get a really shit phone call from the GP Surgery. The secretary/receptionist is telling me that she is setting up a telephone appointment with the Nurse Practitioner to discuss how to manage my recent diagnosis. She tells me the time and date, and hangs up before I can ask “What new diagnosis?”. Not that she’d likely have known.
I go online to look at my records, such as they are. Under “Problems” there has suddenly appeared “Lymphadenopathy – small volume retroperitoneal seen on scan” dated 14th July. I really have no idea what that means. And “Metastatic cancer” with no further details, from 27th July. We’re now into September. Needless to say, I don’t sleep well that night. I want to get my mum’s house sold, get the money sorted out, and get my will updated. Fucking Grim Reaper, he’s back from holiday and really having a go now, he’s rolling his sleeves up; time for a battle, this is where Stewie needs to turn into a real cancer warrior instead of a ’tis but a scratch type of warrior. Sorry about the language. Not sorry.
So in the meantime, I just get on with my sweatiness while my belly heals from surgery. It’s a long and drawn-out process. As a treat, a much-needed treat, I have a bath with Zeppy’s bag off. It gives me a chance to clean up any debris on the scars, in amongst the stitches and glue. Nurse Cathy, bless her yet again, bathes the scars for me with the warm water. Zeppy behaves himself, which is a minor miracle considering the quantity of laxatives that I’ve been prescribed. A few bits of debris are in the bathwater, so I shower myself off and feel so much better when I’m dry and dressed again.
On we go to the telephone calls. First up is the GP. Yes, I can double up on the cyproterone, he’ll adjust the repeat prescription to reflect that. Then this anxiety-raising call from the Practice Nurse. They have a Cancer Care support service available. That’s all it is about. Either they’ve suddenly woken up to my diagnosis, or they’ve just set it up, she didn’t say. But if I have any questions, any anxieties, I can contact the surgery and ask to speak to someone on their Cancer Care team. So basically that phone call from the receptionist was just Grim winding me up again. Bastard.
Then it’s time for the four-weekly bloods. There’s a queue, but not a long one, and I’m out in good time, no panic because it’s not a fasting one. And so to Friday morning. At last I seem to have a clear line, no interference from Grim on a crossed line. The consultant is really very upbeat, she asks me nice questions about how I feel, and how I’m recovering from my surgery, have I any other aches and pains apart from that? Oh, I wish she’d stop chatting nicely, let me know… 45.0. So, in eight weeks the PSA has gone from 98.2 > 72.4 > 45.0, and while that is still a very high score, it is moving in the right direction quite rapidly. They are happy with me and will arrange for three months’ worth to be ready for me to collect on Monday. Next blood test and consultation 12 weeks from now. Overall bloods are OK, given the surgery. How are my bowels, am I getting the runs that I was complaining about before? No, in spite of a heavy regime of laxatives, it’s pretty well ideal in terms of protecting the healing scars, we don’t want any constipation to rupture anything. On that cheery note, we said goodbye for another twelve weeks. I’m kind of hoping there’ll be a scan or two along the way.
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