3 day, 500k cycle

That’s what I’m going to try next!

But first… an apology. Because, from some private emails received, its apparent that my inactivity on this website has caused considerable anxiety. Especially for those who wouldn’t have had the reassurance of bumping into me around Sligo, or being able to check with a friend or family member. The 2+ years of silence here must have been very worrying.

I am sorry for that. I didn’t meant to cause any upset.

The extended silence was caused by combination of

  • taking on too much (over-exuberance at finding myself having a second chance at life) which left me with very little free time, combined with…
  • the very challenging reality of coping with horrible flashbacks, unexpected reminders and on-going medical interventions and checks (my kidneys are not out of the woods just yet; because it seems some lymph nodes may still remain enlarged in the abdomen – but more on that later).

All of which often sees me with barely enough emotional or mental energy resources to manage a few minutes conversation. Never mind write a lengthy blog post.

And yet… (and this is the really weird thing)… and yet… physically I feel very, very good. So much so that I’ve been able to develop my cycling far enough to dare even consider cycling 500km over three days.

Starting tomorrow.

Like last year… we’re cycling for the Sligo Cancer Support Centre – an organisation which continues to be a great help to me.

Like last year… I won’t be alone on the road (see photo – c’est moi avec la barbe and eyes closed!).

And like last year… I will do as much as I can; but am hopeful that this time I’ll be able to go the full distance (we’ll see!)

Then, when the dust has settled, I’ll do a ‘proper’ post here about all that’s happened, and continues to happen medically (there’s been a lot; main news is the ureteric stent was removed; although recently there’s some talk about them wanting to put it back in; sigh). I’ll also talk about how I’ve been finding life with this cancer (for the most part, manageable; but sometimes… well sometimes, it’s just hell – and, sadly, how I’ve been coping with that has been impacting negatively on how I relate to others… but more on that anon).

Meanwhile… here are the three days that lie ahead. And if you felt like donating you can give me something in person next week maybe, or donate online through Con Lee’s page here

Day 1, Thursday June 22nd

8:00am Strandhill – Dromore West – Inniscrone – Ballina – Crossmolina – Bangor – Mulranny – Westport (arrive Castlecourt Hotel, Westport late afternoon c. 4:00pm)

https://www.strava.com/routes/9205179

Day 2, Friday June 23rd

(dept 9:00am) Westport – Louisburgh – Leenane – Recess – Maam Cross – Rossaveel – Spiddal – Galway – Oranmore (arrive Maldron Hotel c. 4-4:30pm)

https://www.strava.com/routes/9205344

Day 3, Saturday June 24th

(dept 9:00am) Oranmore – Claregalway – Headford – Ballinrobe – Castlebar – Swinford – Coolaney – Collooney – Strandhill (arrive approx 5pm)

https://www.strava.com/routes/9205505

Donations through:

https://give.everydayhero.com/ie/wild-atlantic-challenge/wizard/share

 

As I pedal I will be thinking often of Fiona Lee and Jo Moore. Two friends I made through the Something To Sing About Sligo choir. Remarkable women who, this time last year, were still alive and doing their thing.

The world is a poorer place for their absence.

 

 

Flaxseed Bread

This is a great option for anyone seeking to avoid (or replace) wheat, spelt and other grain-based breads. The fennel seeds aren’t essential so could be left out, substituted, or added to if you like. You could also add a teaspoon or two of your favoured herbs and/or spices (my favourites are powdered Ginger and Turmeric).

Ingredients

  • 80g ground almonds
  • 100g store-bought milled flaxseeds
  • 150g golden linseeds
  • 50 butter or cocount oil
  • 1tsp bicarbonate of soda
  • 2TBSP cider vinegar
  • 1 pinch flaky salt
  • 2tsp fennel seeds
  • 100ml water
  • few scrapes of lemon zest

Method

LIne a 20cm square tin with parchment paper and butter, or oil, well.

Place all ingredients in a food processor and blitz to a porridge-like texture (it won’t look pretty!). Pour into the tin and bake for 45mins at 170ºC. Leave to cool before slicing.

From Domini Kemp in the Irish Times. Also an interesting, macadamia nut, lower-temperature take on it here by Patricia Daly.

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!

 

 

 

 

 

 

Maybe cancer got me on TV

Recently a few of those who provide – along with some of us who use – the excellent services of the Sligo Cancer Support Centre were filmed for RTE’s Nationwide. We believe the resulting 7-minute slot might feature in tomorrow night’s edition (Monday 24th, RTE 1 TV, 7pm). But if not, then most likely either this coming Wednesday or Friday.

Given the brevity of the piece, I’m not sure not sure for how long, or indeed if at all, any of my contribution might be aired. But, worst case, there is every chance of glimpsing me either doing Art Therapy… or singing with the Something to Sing About Sligo choir (sitting front row, left, with noticeably more hair than in my FB profile pic).*

The show should also be viewable on the RTE Player here for the next few weeks.

So, apart from doing TV appearances, how am I?

Well there’s heaps to tell you about…

  • CAT and PET Scans results either side of Christmas;
  • the difficulty of reaching the decision to decline maintenance treatment;
  • the terror of facing the open landscape of a new, bare life with the words “you will relapse” ringing in my mind;
  • the desire for something like a “12 Step” support programme, or at least a pathway, that I could just slip into or follow that would provide some signposts and landmarks for me as I evolve my own recovery programme;
  • the joy and relief at seeing how good my blood looked in the microscope mid-Jan;
  • amazingly sympathetic, considerate and caring support from my Community Welfare Officer;
  • the stunning shock as I came to appreciate just how deeply my friends and family members have been traumatised too (each now needs to recover in their own way and time… and we now each need mutual care as we pick up the severely stress-tested threads… and begin to weave new ones…);
  • passing blood far more often and for longer than expected – while also adjusting to new sensations in kidney and bladder – after my ureteral stent was replaced March 11th…

… but for now, and assuming all is well with blood tests taken on Friday (nurse says most results in and are ‘perfect’ but more to come next week) and the last 48-hours of blood-free-urine means that particular challenge is behind me, you can take it that I am doing very well. Very well indeed.

So well in fact that I’m beginning to really enjoy and savour what seem to be steadily increasing energy levels. Sure, I still need to nap sometimes in the afternoon or early evening. But overall the energy is trending upwards.

I’m also finding confidence growing inside again… one which leaves me believing that not only do I have a considerable chunk of future ahead of me, but that that remaining future can now, finally, be turned and faced bravely. Not only that but I might even soon have the mental and emotional energy to start populating it with many good things. (This latter inner progress is particularly welcome; because for a few weeks there my future felt and looked like a very lonely, unsatisfying and bleak place. Thank you Art Therapy-!!).

Which is why, despite nearly once-daily bouts of blood in my urine at the time, I was still able to make my way to Doolin for St. Patrick’s Day to enjoy some ocean time with some human friends and Dusty. A massive, massive day for me… the depths and significance of which really only hit me when I got there – and which I will unfold soon in a dedicated post.

Many thanks to Jan Ploeg for this shot of me with Dusty:

Sean Callagy with Dusty In Doolin 2014-03-17
Me with Dusty In Doolin 2014-03-17

* There are of course far easier ways of getting featured on telly. Next time I’ll try one of them..

Stent and Chemo 6 update

Sean Callagy Live Blood Image 2013-11-21
My blood ten days after Chemo 6

A lot… an awful lot… has happened since my last post. And, yes, a lot of what has happened has been awful. Not physically awful like my reaction to that anti-biotic, but emotionally and mentally awful. Because, while November and December were replete with signs that I was getting steadily better and better (including a nicer Live Blood Analysis profile – see photo), I was finally beginning to feel it all.

Very deeply.

I guess it’s the reality of how we humans deal with trauma. While in the thick of something we do all we can to get through. Including dampening our emotions. Then, when it’s all over, we collapse in our own individual ways… and then find our individual ways of recovering in our own time. That’s why I’ve been so quiet these last few months.

Because, despite having so much to tell you about – and despite the fact that most of it is thankfully positive – I just couldn’t bring myself to share it. Because recounting meant recalling; and recalling meant reliving… and there was no way I could do that while simultaneously trying to admit and process huge post-traumatic emotions while also researching and informing myself about my survival chances and prognosis if I declined the suggested post-chemo, two-year maintenance treatment.

Let me summarise the roller-coaster for you…

Reading the stats on your own chances with a cancer that medics say is incurable is horrible beyond words. Add to that the upset of the last six months finally kicking in. Then compund that yet again with new fear that grips when you notice a lump is slightly bigger than it was yesterday. Then a Great Northern Diver eats a crab in the ocean just yards from you and the wonder of Life triggers joy… and then you remember that since having your stent fitted in November, three men you shared a ward with have died with cancer and… oh, and you have it too.

So with all that emotional see-sawing going on, sometimes dozens of times a day, putting energy into blogging would have been unwise.

However, mid-January I started Art Therapy in the Sligo Cancer Support Centre and am now feeling more at home with my new reality and the plethora of emotions it’s triggering. Yes, there are times when the horror of it all still comes crashing through… but those times are growing less and less frequent now. Which means there is more room for joy and there is a very welcome (but still fragile) confidence growing as my new epigenetic-focused lifestyle seems to be taking hold nicely.* Time will tell just how well-placed that confidence is. But if Robert Miller was diagnosed at 45 and is still going strong at 70+ now – and his oncologist works with two members of the team who identified the 109 genes involved in Follicular Lymphoma – there’s every chance he’s on the mark with his suggestions how I can tip the eipgenetic balance back in my favour.

So, I finally have the energy to update you to the end of November…

Stent almost unnoticeable

Thankfully. Apart from two, fairly non-intrusive phenomena.

The first is an occasional sensation of pressure inside. Somewhere around where my right kidney is. Only occasional, and not painful. Just mildly annoying. As it would be if you felt someone’s finger pressing into your back and they didn’t ease off when you objected. But shifting a bit in my chair or standing and moving generally releases it. It only happens once every two or three days so, as it’s preserving what’s left of my right kidney function, I can live with it. The other experience is also tolerable; and in fact is, at times, somewhat entertaining.

Prior to the stent I would always get plenty of warning about when my bladder might need emptying. So much warning that I could often go several hours from first hint to a desperate need to empty. Which gave me plenty of time to plan where I’d eventually go (very useful on a long drive or when stuck in traffic!). But those ‘plenty-of-warning’ days are no more.

Because now, I can be sitting watching TV, on the computer or driving and get no hint at all of anything building up. Then I stand and… whoosh!… it’s like a bucket of water has been suddenly poured into my bladder and there are barely minutes before my trousers are in danger of a soaking. The entertaining bit? Well it’s sometimes frankly ludicrous just how much the signals can be at odds with the results. In some cases a mild urge produces what must surely be a pint or more. Other times an extremely urgent and dangerously full feeling barely yields a whiskey glass worth.

But thankfully, other than in those two ways, the stent in my right ureter is unnoticeable. I hope this continues to be the case when it’s replaced in the coming weeks… unless… unless… dare I dream?… my abdominal nodes have shrunk sufficiently since the last renogram that they no longer encase my urter. Which would mean my kidney would no longer need the help of this artificial drain pipe. My January 9th renogram will have revealed the inner story – and they will tell me when they bring me in for the operation in the coming weeks (apparently the procedure is so light, I could be released that same day or, at worst, kept overnight).

Chemo 6 – sheer exhaustion

November 11th brought the sixth of six sessions of R-CHOP. As usual the day passed quickly – no doubt helped by sleeping through considerable chunks of it. But there were several notable experiences. The first of which was seeing myself in a mirror halfway through.

As usual, by lunch, my bum was sore from sitting for hours and my bladder was dropping some hints. So, seizing the opportunity between drips, I took my usual corridor stroll with my friend, and surprised myself by walking way further than on any previous day. So I found myself using an unknown toilet – a toilet with a mirror. From which a drained, haggard and ghostly white face stared back. A face so different from the one my mirror at home had shown me that morning that I was jolted into almost the same depths of shock as when I’d had “My Auschwitz Moment” some months before.**

But I took a breath, dug deep… very deep… and reminded myself that things were going pretty well. I was now regularly walking 2-4km daily – further than I’d been able to walk for years (yip, this cancer had been tiring me for years). Bloods the day before had revealed a new LDH low of 332 suggesting those abdominal nodes were continuing to shrink. Also, there had been previous chemo days on which I’d been far, far weaker. So weak in fact that I needed a wheelchair to get and from the treatment room. Yet here I was… having just walked yonks further than on any previous break… able to stand freely and stare at myself in a mirror knowing full well I could walk all the way back with barely an effort. So no matter what impression the mirror gave, I was doing okay.

Of course, logic doesn’t always trump feelings. But nonetheless, somewhat reassured, I walked back and feel asleep shortly after the next drip began.

Next thing I knew they were waking me for the final three injections. Three huge syringes, the contents of which had to be injected manually through a cannula – because these are the ones most likely to cause your veins to collapse and so might need to be stopped promptly. Dripping them in, unobserved, is considered too dangerous.

All was going well until… along with the normal chilly cold feeling (one of them came from the fridge)… I sensed a change in my arm. Something different. Something like what I felt just before that anti-biotic shock. The nurse paused and asked very seriously if I wanted her to continue. I said yes but to proceed with caution. She asked again. This was chemo and she needed to be sure I wanted to go on. More nervously now, I still affirmed. That strange sensation continued for a few more seconds… but then faded. So I made it to the end of the injections.

The other incident of note that day was an internal one: the sudden realisation that a whole new emotional vista was opening in front of me. A new, dreadfully unknown, landscape had to be entered. Unlike other landscapes, ones which might open because I had chosen a new career for instance, this was one I couldn’t turn and walk away from. This one was going to be my landscape for the rest of my life. No matter which way I turned. Of course I knew this moment had been coming all along… but still, I wasn’t ready for just how powerfully it would hit me when, while syringing, the nurse said something along the lines of “Great day for you today Sean! The last day of chemo!”.

Of course she thought I’d be happy to see the end of treatment. No more hospital visits. No more chemical-laden injections. But my reaction was “oh fuck, oh holy fuck, I’ve reached the end of chemo… the end of the stuff that has just saved my life… what happens now… what if the cancer comes back… what if the epignetic and anti-angiogenesis stuff stuff doesn’t work for me… what if this is the beginning of my end… ?”

It was a tough few minutes. Far tougher than the toilet mirror. But, nonetheless, I couldn’t help falling asleep after the final injection… and remaining so until 4:30 when they woke me so they could close the ward. I’d somehow slept through the hubbub of six other patients leaving their own chemo chairs and going home. I found this worrying. Because 3pm was my usual departure time… and as that strange sensation in my arm had happened during the red injection (the one known to be toxic to the heart muscle) I worried if I’d pushed things too far when saying “yes, please continue”.

But thankfully I was able to walk to the car… and then (amazingly) walked nearly 1.5km when back in Rosses Point. Then I quickly settled into the same pattern I’d adopted for each of the previous three-week cycles. The fruit, nut and yoghurt breakfast followed by some weights and as long a walk as I could manage. Then some meat and veg for lunch while testing my brain with Countdown before dozing / napping until ready to eat more veg and meat, fish or eggs in the evening. Or pudding rice with Simon’s Buns, almonds and maybe some Carrageen.

Then in week three, as had been happening ever since Chemo 3 onward, the nausea got worse and more frequent. An experience the nurses had quaintly and reassuringly dubbed “delayed nausea”. Seems it happens that some folk get the nausea some time after the chemo chemicals have faded (fading which takes about 5-6 days after treatment). But, helped by walking-to-distract-from-it, that fortnight too passed.

Suddenly it was December… and there were several big, very big, things looming on the horizon.

I needed dental work done. Then there was a CAT Scan ahead that would show the size of whatever remained of abdominal nodes. After that there was a PET Scan to see just how much active cancer still remained (because they can’t kill Follicular Lymphoma with chemo; at best they can knock it back for a while). And, biggest of all, I needed to make a decision about maintenance treatment – scheduled to start January 7th.

So, while glad to be alive to enjoy another one, it was going to be a fateful and busy run up to, and through, Solstice. But thankfully I was finally beginning to feel the energy to engage with it all… 😀


* Epigenetics refers to how lifestyle and life experiences determine to what extent certain genetic potentials are expressed or not. For instance, identical twins with matching genetic profiles in their early years, develop completely different epigenome profiles as they age – and so can have vastly different health experiences as a result. This video gives a good intro to the subject:

** This is not a glib remark. My Auschwitz Moment is the most succinct way I can convey the horror of what I saw one day in a hospital mirror. Prior to and after my first chemo I was so weak that I was collapsing exhausted into bed after every 3m round trip from bed to toilet and back. Yes, a 3m, leaning-on-wall shuffle left me exhausted every time. But gradually, as I grew accustomed to the interweaving patterns of nausea and heartburn, I managed to increase food intake and began to gain strength. Until one day I felt ready for the challenge of planning and executing a shower. While undressing I saw myself in the mirror and was rooted with shock. Finally tears of horror, shock and the most awful fear impulsed me away from the sight of my own emaciation. Which was all the more shocking because, until that moment, my steroid-swollen legs and cancer-bloated abdomen were all I’d seen of my body. So I’d had no hint of just how dreadfully thin I’d become. The fluid retention in particular had been hiding it. But now there was no escaping the sight of my rib cage, the absence of pectoral muscles and horribly bone-thin upper arms… the like of which I’d only ever seen before in those horrific concentration camp photos. Hence my dubbing this My Auschwitz Moment.