Recent weeks have seen a heartening increase in the number of inquiries about how I’m doing – and the number of good wishes coming by email, post and via parents and siblings. They, along with the many offers of treatments from friends and colleagues, are all very much appreciated. In time I will get back to you each personally but for now, in order to preserve my energies, these updates will have to suffice.
And the need to preserve my energies became very noticeable recently. Because what with there being complications around my stent operation and Chemo 6 happening just a few days later, this time it’s taken me almost 3 whole weeks to begin to feel good. (Whereas after Chemo 4 or 5 it took maybe 1.5 to 2 weeks).
Oh, and as my stent experience brought up a lot for me, this is quite a long post. So I will write separately about Chemo 6 soon.
My stint with the stent…
… began on Tuesday 5th November. It didn’t begin well.
While being prepared for the op, someone handed me an A4 document outlining the stent operation. Apparently, I was to undergo Antegrade Ureteric Stenting during which a hole would be made in my back, my kidney punctured and the stent pushed through it and down into my ureter and bladder. A second stent was then to be inserted into the open kidney and would be left hanging out my back with a bag attached to the end of it.
I was stunned.
No explanation as to why they weren’t going up my penis and through the bladder as I had expected (even though that can be v painful I had spent days mentally preparing for that approach, not this one). No word of how long the bag would stay hanging out of me. Or how I was to live with this new appendage after I left the hospital. I was floored. All the more so because the previous day I had spent considerable time in the hospital trying to find someone to discuss my concerns with.
1. Does the stent have ‘non-return’ valves? If not, then surely any time I lie flat on my back or whenever my torso is inverted (e.g. when upside-down during a free dive, or with head below hip level during a yoga posture) any urine already in my bladder will run back up the stent and into my kidney. Nature doesn’t want that to happen, so what damage is that inverted flow likely to cause?
2. What if the stent moves and pushes into my kidney? Or presses against the wall of my bladder? Will I feel pain? And even if I don’t feel pain is that a guarantee that the stent is not moving around doing damage anyhow?
3. How long will the stent be in? And how, and how often, will they check to see if abdominal lymph nodes have released their grip on the ureter?
4. I’ve read about people feeling they need to pee all the time (because the stent creates the permanent sensation of there being ‘something’ in the bladder to excrete). If this happens to me, can the stent be taken out easily? Because I’d rather not live like that thanks very much.
But… despite my best efforts… I had very little luck. Not because the staff didn’t care (the people I spoke to went out of their way to try and find answers for me). But simply because the urology team don’t have the staff to spare to spend time addressing such questions on a one-to-one basis. So I was very grateful to find a nurse through the radiology department who left me feeling more reassured. Because, while unable to address all my questions, she did assure me that in all her years she’d never heard of back-flow causing problems. Nor a stent shifting around and causing the kind of damage I feared.
So at least two of my concerns had been addressed before I got ‘the bag shock’ the next morning.
But the bag shock was trivial
Compared to what happened next.
Just as I was digesting the notion of the bag and was wondering what reaction I’d get if I called the whole thing off… (I preferred the idea of living with 1 kidney over 1.5 kidneys and a permanent bag hanging out of my back)… I felt an itching sensation on my left inner forearm. Looking down I noticed my skin had developed a blotchy purplish hue. Nurses stopped the drip and set up a new cannula in my right arm. A logical reaction. Because, after all, chemo wears out veins. So chances were those in my left arm could no longer cope with cannulae or chemicals.
But within seconds of that new cannula starting to deliver in my right arm, the same symptoms started. This time with the added extras of extreme dizziness, nausea and an overwhelming desire to lie down and sleep. In fact I had started to feel so bad, so fast that I had several moments of deep fear that this particular sleep might be terminal.
However, quickly realising it was not a vein issue but an allergic reaction to the anti-biotic, the nurses stopped everything, postponed the op and put me under close observation. Thankfully, much to everyone’s deep relief (my own included I can tell you!), within about 30 minutes or so I had recovered sufficiently to allow them try an alternative anti-biotic. Nervously, I agreed and one nurse sat watching me hawk-like as it was dripped in over 20-30 minutes. This time however, no allergic reaction. Phew!
So, 1.5 hours behind schedule, I was wheeled to the X-ray unit for the stent operation.
When there, the operating doctor amazed me with how gently, honestly and thoroughly he explained everything and addressed my concerns. My fears melted away in minutes.
He’d never heard of problems arising from back flow. Unlikely that the stent would move as it was designed to kept in place by the curves at either end (and they’d be in the right place in both my kidney and bladder because the stent length would be relative to my height).
The bag was to stay in for just the few days I was in hospital. If the stent functioned well the bag would be removed the morning I was to be released. During those days I might notice the bag filing with pink fluid due to blood – from the damage caused by the operation – mixing with the urine coming out. (I usually faint at the sight of blood, so this didn’t appeal. But sure enough, as the man said, the fluid was pink and not red. So fainting didn’t happen when I looked at it).
These stents would normally be replaced every 6 months because particles can build up in them causing blockages and/or infections. But because of my condition, mine might be replaced in 4 months time… unless scans showed it could be removed entirely.
The dye-assisted renal scan was to repeated in late Jan / early Feb to asses how much kidney function might have been recovered. The first renal scan showed my left kidney filtered 80% of the injected dye; my right doing just 20%. His experience suggested that, given the damage already done (some cortical thickness has unfortunately been lost) perhaps my right kidney might rise to 30% of the dye the next time. Not as much as I’d like, and I will be visualising and aiming for more in the interim, but clearly even 30% would be preferable to 20%… which in turn is streets ahead of my own 5% estimate (which was based on the visuals I could see during the first scan).
So, reassured by him on many levels, I allowed them inject the happy juice.
And then I came to appreciate that those who described its effects as akin to being slightly tipsy, really need to experience freediving. Or maybe just snorkeling. Because the sensation was more like the lovely bobbing sensation one gets when floating in a gentle swell on the ocean surface… and it brought back fond memories of a quiet inlet and a deeply nourishing dive day with a close friend in Muinis, Co. Galway.
Next thing I knew I was in a ward bed – with a warm, squidgy bag of bright pink fluid for company.
Not taking the piss.
No matter how urgent or often the urge to go, nothing came out. Also, quite often I found that no sooner had I shuffled back to the bed, I’d get the urge to go again. But even if I honoured this repeat urge, nothing. Then some time Tuesday evening 4 or 5 drips. Honestly. Just those few drips. Then some time Wednesday, after 30minutes of shuffling along the corridors with a visiting friend, I managed perhaps a teaspoon.
But, despite that glimmer of hope, I was still worried. Because come Wednesday evening, despite having drunk several litres of water, and having sat as upright as I could for long periods to maximise gravity’s involvement, that was all I managed in all that time.
It left me wondering whatever had happened to my left kidney? Why was it no longer sending urine to my bladder? Could the anti-biotic shock have done something? Was some damage done during the operation? Maybe the stent is somehow blocking my left ureter’s outlet into my bladder? I was desperately searching for explanations. Because, surely if my left side was still functioning, something more than a teaspoon worth of urine ought to make it to my bladder in a 36 hour period?!
The oncology nurses couldn’t explain it and even if she could have, the urology consultant visiting me every morning and evening, simply didn’t – only compounding my concerns by smilingly telling me I was worrying too much and that everything was going to be okay. (Sheesh! Seems that in her mind my asking questions meant I was worrying. Whereas in my mind, her not giving me an explanation meant she either didn’t know (worrying!) or knew there was something wrong but couldn’t bring herself to tell me (even more worrying!). As if cancer wasn’t enough to have on my mind!).
Close bag. Open flood gates!
Then, near midnight on Wednesday night, a night nurse closed off the outlet to the bag. This was to allow the stent take over fully – after which all the urine produced by my right kidney should travel down the stent to the bladder for me to pee. Sure enough, within 30minutes yet another urge to go produced surprisingly generous, and thankfully pain-free, results. Happy days!
Because this meant that, even if my left kidney and ureter were still in trouble, at least my right kidney and ureter seemed to be up to the job. And then… some time during a 4:00am toilet visit… the penny dropped! 😉
The ureters enter the bladder from behind (posterior). So any time I lay close to horizontal, gravity was going to make urine leave my bladder via the permanently-open stent. It would then travel up the ureter toward my right kidney from where it would meet the open holes of the second stent before making its way into the bag. Simply because water is always going to drain through the lowest exit point of any system.
I put this theory to the night nurse. He said it sounded reasonable but couldn’t be sure because he wasn’t involved in urology. The next morning when I outlined the problem and my theory to the doctor just before he removed the bag, he seemed surprised I’d had a problem urinating… but confirmed that my plumbing / drainage theory sounded plausible as an explanation of why my left kidney appeared to have taken a break.
So it was on with removing the bag.
The term “baggy” had been used to describe my right kidney after the first renal scan. Because the calyxes didn’t have the normal distinct edges one would expect, and instead appeared loose and “baggy” in shape. However, with just two days of stent and bag there was obvious improvement with my calyxes which now showed crisper, more defined and more normal-looking edges. Thank you stent!
Not quite so cheering however was the impact some nodes were still having on the ureter.
On the X-ray screen he showed me the dye making its way down the inside of the stent and arriving into the bladder with no issue. But he also showed me how the dye was trickling down the outside of the stent (between it and the inner walls of the ureter) only to stop at a point a few inches below the kidney. Where some swollen lymph nodes were blocking the ureter.
That of course was just a few days before Chemo 6 did its thing. So I have every hope that those particular nodes will have shrunk back a bit since then. I am also hopeful that they will shrink back even more in coming months as I continue with medical treatment and also explore and adopt the natural strategies suggested by many (but most especially those suggested by 25 years fNHL* survivor Robert Miiller).
With both a CAT and PET Scan coming by end December / early January… the first of 2-years worth of Rituximab sessions on Jan 7th… and a renal scan to follow at the end of that month… I’ll know the full story soon enough.
Meanwhile it’s on with the research, reading, exploration, good foods, gentle walks, relaxation, coping with the nausea (yip, still happens), times of deep tiredness, working with my emotions (perhaps the most challenging being fear that arises when I notice any tiny change in any part of my body)… and when energy allows reconnecting in a meaningful way with friends and family… and, perhaps most important of all, being very, very careful about what I reintroduce into my Life. After all, as one friend cautioned, its very clear where my old Life leads to.
Thanks for staying with me on the journey. Your support and companionship is appreciated 🙂
* Follicular Non-Hodgkin Lymphoma