Cancer Follicular Lymphoma Uncategorized

Not swimming with sharks

Not while I have Stent 2 in me. Because since it came into my life on March 11th, it has proved to be a most unreliable, unpredictable and malevolent visitor… and I’ve since seen more blood in my urine than I care to remember. Consequently, as one must eventually pee in one’s wetsuit when snorkelling and freediving for any decent length of time, and sharks are known to become excited and somewhat unpredictable when they detect blood in the water, I’ll give that particular notion a miss for now.

The bleeding is not happening as much now thanks to trialling and erroring my way into strategies which minimise the instances of bleeding. But in those early days of this second stent stint, that disturbingly-red urine was often accompanied by a profound exhaustion, dizziness, weakness and sometimes serious loss of coordination. Making falling and hurting myself a serious possibility.

For instance, on a calm late-March night walk, toward the end of a very slow, hour-long and gingerly-minced 1.5km walk, that increasingly familiar wave of tiredness washed through me all of a sudden. That special, new kind of tiredness I was quickly learning came along with the stent cutting me inside. A few strides more and my legs began refusing to work in parallel planes – growing more and more insistent on doing their own thing with every passing yard. Despite my best mental efforts – efforts which had served me very well while relearning how to walk along hospital corridors – each leg insisted on wandering across in front of the other. As if determined to prevent its counterpart from moving forward.

The drunk snapped out of it.

Initially I laughed at this evolving loss of control. Because I started having nostalgic flashbacks of laughing at my own stumbles while wobbling home, merrily drunk, on those fun-filled nights out in Carrick-on-Shannon in the mid-1990s.

But I quickly reaslised this was no laughing matter. Far from it. Because, as the unsteadiness and wobbling worsened I began to appreciate three things. Each of which was more dreadful to contemplate.

  1. This plastic tube, repeatedly rubbing inside me, was damaging either my bladder lining, my right ureter or kidney – or all of them. Surely this didn’t bode well for the long-term functioning of my urinary system?
  2. I was so tired, weak and uncoordinated that I in serious danger of falling and hurting myself. It was late and the village was empty. If I fell and couldn’t get up, how long before a car came by? But even if one arrived in minutes, would they risk stopping for a desperately-waving man lying at the side of the road, late at night in a deserted country village?
  3. But worst of all… if I could no longer walk any distance, at a speed that would get my heart rate up and thereby help circulate my lymphatic fluids, then the second most important of the 4 Pillar programme suggested by 25-year survivor Robert Miller was seriously compromised. If not lost to me altogether. So I began to seriously doubt my chances of managing this cancer without the “daily-double” of moderate aerobic exercise both morning and evening. In fact, oh shit, could this new kind of tiredness be the cancer already coming back? Because, in an effort to minimise the bleeding,  I’d already gone nearly two weeks without decent exercise. Is that why I was feeling tired all the time when I walked now – and the bleeding was just a coincidence?! Oh, terror!

Perhaps 300m later my legs and mind began somehow began slowly reacquainting themselves. So I eventually made it home safely… only to witness what looked like rich, red wine streaming from me into the toilet.

Deeply upset, frightened and exhausted, I slumped into bed.

The tiredness is not cancer related. Thank fuck.

My reporting these new experiences was met with understandable concern. After all tiredness can be s sign of cancer. But thankfully, blood tests showed that all-important LDH marker was still nice and low. Then word came from the urology department that this bleeding was most likely just things ‘settling down’ after the replacement op. Somehow, I doubted that. But, sure enough, by mid-Aprl the movement-induced bleeding had all but stopped… so long as I didn’t walk too fast. Or run.

While relived to find that the urology team had been on the mark, I was still puzzled. Because Stent 1 had allowed me do what I wanted with impunity. Walk as fast as desired each morning and night. So fast that I was approaching race-walking speed. I could run freely too. Not that I had ever enjoyed running before this (except perhaps while playing hurling, basketball or soccer). But some days there were times when the joy I now felt at being alive was too much and I couldn’t stop myself running on the beach! Yet here i was with Stent 2 causing me bleeding if I merely strode up the steps from the second beach too fast.

Mid-April saw my 3-monthly hematology review – for which they also did an x-ray to double-check the stent was sitting in the right place. Apparently it was. So I had no choice but to find and learn a walking pace that would allow some increase in heart-rate while not causing visible blood in my urine afterwards. This took a few weeks but once mastered the rest of April and May passed off uneventfully and saw my fitness levels climb steadily again.

As an example of just how much was possible for me then, on April 19th I walked 4km in the morning. Then midday cycled to Strandhill and back (39km) before driving to Limerick in the afternoon and there doing a 2km walk shortly before bedtime. This level of fitness also allowed me start extending the length of time I could enjoy being in the water with my friends. It also allowed me risk offering myself as a volunteer for the Surf2Heal week in early June. (If you’ve any interest in the ocean, and even if – like me – you can’t surf, do consider volunteering for this sometime. Or just come down to watch for a while. Because honestly, the squeals of delight, grins of joy and gleeful celebrations of success will warm your heart!).

But then…

… inexplicably… first week in June I passed blood after one of my usual cycles in and out of Sligo town. An exercise option that Stent 2 had previously left untouched. Hoping it was a once-off, I pedaled that route again two days later – cycling slower as a precaution. But I still ended up with strong red in my urine afterward. I tried cycling even slower a few days later again. Still blood in my urine! I was devastated. Even worse, over the coming weeks, despite steadily slowly my walking pace, right down to near-crawl speed, blood levels in my urine kept increasing in both redness and frequency. I also discovered that swimming, that wonderful non-impact, vibration-free sport was also causing bleeding.

I also noticed a massive change in associated body sensations. Some of which I was glad about. Some not. For instance whenever it did strike now, the tickle in my bladder did so with greater intensity than ever before. But that was tolerable seeing as it was now happening with far less frequency than ever (most days hardly ever). But not so good were the new sensations in my penis.

Because suddenly it was not my bladder telling me “you need to pee Sean”. No. Now it was the first few superior, proximal centimeters of my penis. In English that means first few cms, closest to my body, as I look down at it. Add to that horrible, unwelcome change a strange thrumming, vibrating sensation – felt sometimes in my bladder, sometimes in my penis – as I passed urine. Not painful. But very, very disturbing. But that wasn’t all. Because on top of all that was learning that this new penile-based “you’ve got to go” sensation gave even less warning than the bladder sensations used to. So much so that on occasion I dribbled into my pants before making it to the loo.

So… with those new, unwelcome body sensations… and my exercise options being steadily whittled away… and my mental health deteriorating rapidly due to combined loss of endorphins and serious worry that this new enforced sedentary life would allow the Follicular Lymphoma regain a foothold… I wrote a desperate letter to the urology team asking that this be explored properly. Because while I could understand, accept and live with Stent 2 causing bleeding by rubbing if certain movements were made too fast or repeated too often… it made no sense whatsoever that the damage would suddenly start increasing with decreasing amounts of movement.

Dare I hope?

Unless… unless… the nodes pressing on my ureter, and which had been clamping Stent 1 firmly in place, might have now retreated so much that Stent 2 was prone to jiggling around far more than it’s predecessor ever could have? Oh, could I dare hope for this to be case? But there are other possible explanations.

A slight change in manufacturing materials between Stent 1 and 2? Perhaps human error meant Stent 2 was a slightly longer, shorter, thicker or thinner? Maybe a stone formed and was stuck between the stent and the ureter wall and was scratching as I moved? Maybe Stent 2 is in a slight different plane than Stent 1?

Most of those questions have yet to be explored and answered fully. But at least the big one is being explored – and the replacement operation intended for early August has been rescheduled for early September to give the urologist time to review a CAT Scan of my abdomen. That scan took place on Tuesday 19th and I’m waiting for news. News of whether September’s operation will be to replace Stent 2… or… remove it entirely.

If the news isn’t as I hope it’ll take a while to recover. Because not only might I be facing another 4-5 months of walking at a death-march pace (boring!), cycling on my bike training stand (boring!) and doing kettle bell workouts (boring!)… and Stent 3 could be just as abrasive and further raise the chances of long-term reduced function in kidney, ureter and/or bladder (due to the rubbing)… and of course, the big one, it means there are still enlarged nodes in my abdomen.

In which case all I can do is keep on keeping on. Making the most of my stationary, non-impact exercise options… and hope that in time the 4 Pillars will continue to move things in the right direction. Which it does seem to be doing. Because the slightly enlarged, palpable nodes in my neck and ribs continue to trend downwards. So too does the lump at the back of my left knee – a lump which doctors told me 16 years ago, and last year, was a Baker’s Cyst and nothing to worry about. But I have my suspicions about because if it was not cancer-related then why did it nearly vanish during chemo only to enlarge again afterward and since February this year has been slowly trending downward as the 4 Pillars were increasingly applied?

So even if the news this time isn’t quite what I want, I am alive and, compared to this time last year, in bounding good health and am deeply grateful for it. So I will keep on keeping on focusing on those things in life which bring me the deepest satisfaction. While remaining hopeful that sometime in the future, the very near future, I might no longer need a Ureteric Stent.

To wrap up – and clear up.

double-j-stent-image-shared-on-wikipedia-by-Lucien-MonfilsSeveral of my close friends were puzzled by all my tiredness, bleeding and upset over the last few months. I in turn was puzzled by their puzzlement. Until we figured out that their notions of this stent were based on the more widely known coronary stents – which are small in length. So in case you are under the same impression let me clarify that the ureteric stent in my body is probably about a foot (30cm) long.

As you will see in the Wikipedia image I’ve posted here, this stent stretches all the way from the outlet of my right kidney down through my ureter and into my bladder. It is called a “double-j” stent because it is curled at both ends for safety reasons. The last few inches of each curled end are punctured with tiny holes – like a filter. Urine trickles its way from my kidney through these holes and then down the stent inside my ureter before trickling out into my bladder.

While I’d prefer if it had non-return valves, this is still a pretty good way to keep someone’s ureter open and preserve kidney function. Although as you now know, it can cause some worrying problems for the bearer!

So if you can spare the time and energy, please say a prayer, offer a drumming session, send some healing energy or some such with the intention that I might one day return to such good health that I no longer need one.

Another post coming soon about the 4 Pillar programme… watch this space!