An Unexpected Journey

A breeding plumage Bar-tailed Godwit on a local marsh in late April is one of the species inland birdwatchers dream about.  Not a rarity, but scarce away from the coast a few turn up each spring as they cross the country en-route from West Africa to the high Arctic.  One recently graced West Earlham marsh just a couple of miles from my house in Norwich.  Normally I would never have to force myself to leave the house to see such a special bird.  The morning of Sunday 18th April was diferent. It was less than 48 hours after I had undergone a diagnostic procedure under general anaesthetic. I needed to go for the Godwit as my next tentative step on an unwanted and unexpected journey. One that began nearly four years ago.

Episode One – July 2017

I had booked a few days leave to go on a wildlife watching trip to Scotland with James Lowen, Will Soar and Ian Robinson. Two days before departure my pee turned strawberry red! The need for urgent medical attention caused me to withdraw from what was a spectacularly successful trip. The gross hematuria (visable blood in urine) cleared up after six days. Less than two weeks after referral by my GP I attended the Hematuria Clinic at the Norfolk and Norwich University Hospital. Despite exhaustive investigation, the consultant urologist could not find the cause and discharged me. After the investigation Ingrid and I relaxed with a trip to North Norfolk. Restored by coffee and cake at the Artemis cafe in Cley we moved to Holt Country Park. Here we enjoyed a fine range of butterflies and both Hummingbird and my first Broad-bordered Bee Hawk Moth.

Broad-bordered Bee Hawk Moth (Hemaris fuciformis. – Holt County Park, Norfolk August 2017
Episode Two – April 2018

Nine months later I was recently returned from a successful trip to Western Sahara with Graham Clarke.  Most days I was travelling to Carleton Marshes SWT reserve trying to see the American Bittern.  I experienced exactly the same symptoms, was again referred to the two week pathway and discharged without diagnosis.  The consultant explained that I might be one of those rare individuals who bled episodically. Much in the same way that some folk are prone to nosebleeds.  Hmm… – next time how do I know if that is true or it is something sinister? 

American Bittern (Botaurus lentiginosus) – Carlton Marshes SWT Suffolk, April 2018
Episode Three – December 2020

Ingrid had accepted a job offer in Truro and I had made the decision to leave UEA and move to Cornwall. In early December 2020 and despite the complexities of the tier system we visited Truro. After a good look around and viewing a couple of properties we brought Kat back from University for Xmas. We both felt all set for our next adventure. Except just before Xmas the hematuria came back. Same presentation – six days of bright red pee and it cleared up. What should I do? Stick or twist? Am I just one of those unlucky individuals with unexplained episodic bleeding? My rational head ruled and I phoned the GP. They quickly excluded a UTI and sought guidance from the NNUH urologists. The urologists did not hesitate–my last investigation was 2.5 years old and they wanted me back PDQ.

Next Steps

A telephone consultation advised, within the constraints of a post-Xmas Covid surge, another CT scan and a blood test.  Both were completed by late-February just before I left UEA after 30 years and moved Ingrid to Truro. Two weeks after I returned from Cornwall I received an unexpected phone call to arrange a date for a urological day procedure. “Yes sure but I don’t know anything about this”.  The consultant’s letter arrived an hour later.  The CT scan had revealed an abnormal area in my renal pelvis (where the urinary tract joins the kidney) The consultant wanted to perform a diagnostic uretoscopy +/- biopsy for 16th April at the James Paget Hospital in Great Yarmouth.

I  put the investigation out of my mind when I went back down to Cornwall at the end of March.  I brought Ingrid back to Norwich for the Easter weekend and her second Covid jab.   It was a short lived period of calm. On Easter Monday I drove Ingrid to Reading Station and we stopped off to see my Mother and explain the situation.

A diversionary yomp around Happisburgh with Graham on Saturday 10th April brought my first Wheatears of the Spring.  The next day further distraction came in the form of a charming Little Ringed Plover on West Earlham.

Outcome of the Investigation

I was back out East on Tuesday 13th for pre-operative observations and a covid swab.  After this I self-isolated for three days until John Geeson kindly drove me out to the James Paget on 16th for my 7am admission.  The procedure, done under general anaesthetic, was successful. When I came around the surgeon came to speak to me. He was able to inspect my bladdder/left urether – all clear.  However when he reached the renal pelvis he found a tumour. This appeared to be a Transitional Cell Carcinoma (TCC) which he biopsied for the purpose of grading. The treatment – radical nephroureterectomy.  This is the removal of the kidney, entire ureter, and a small piece of bladder where the ureter and bladder connect.

John collected me that afternoon and took me home where my son Hugh was waiting for me.  That evening I shared my cancer diagnosis with my family and some via video calls.  Although difficult I was grateful for modern technology so that I could see the love and support in their faces.  

TCC in the renal pelvis (also called upper tract urothelial carcinoma – UTUC) accounts for ca 5% of kidney cancers.  The incidence is about 2:100,000. It affects twice as many males as females and the average age of diagnosis is late sixties.  For anybody wishing to understand a little more please look at the pages produced by Macmillan.

Hello I’m still here!

The next day is a bit of a blur as the anasthetic wore off and I got used to the discomfort of a urethal stent.  After 24 hours I could remove the compression socks and have a shower.  News of the Godwit broke that evening and when it was present early the next day there was no stopping me.  The bird showed well close to the bund.  As I photographed it in the warm sun I chatted to many passing dog walkers who showed an interest.  Most importantly it reaffirmed to me that whatever the future holds I will not become Nick the cancer patient.  I am Nick the academic/biochemist/birder/moth-er/photographer, Ingrid’s husband and Hugh & Kat’s father.

The pace quickens..

On discharge the surgeon told me that the pathology report would be 10-14 days.  This indicative timeline was confirmed when the stent was removed on Tuesday 20th.  Much more comfortable I received a call from or estate agent. An acceptable offer for our house was progress but represented more uncertainty.  Never mind we had a holiday on Scilly to look forward to and the pathology results would be available on my return?

In fact the pathology report was with the consultant within a week.  A treatment plan was agreed on Monday 26th and I met the consultant on Wednesday 28th.  His feedback was a low-grade tumour (TCC) confined to the renal pelvis. Treatment would be laproscopic (keyhole) nephrouterectomy that would take place asap after two further tests. Blood was taken there and then by a nurse.  A CT scan, we agreed, would wait until after Scilly. Also huge kudos to my GP who got me a second Covid jab at very short notice.

I drove to Truro the next day (29/4) and the day after (30/4) I had a phone call with one of the specialist nurses.  She was very reassuring and walked me through the diagnosis, surgical procedure and recovery.  The NNUH called at the end of our holiday (7/5) to give me the date for surgery (18/5).  Since returning to Norwich I have been busy with appointments.  I have also caught up with friends and former colleagues whose perspective, humour and support has been invaluable.  

Temptation

You couldn’t make this up, but as I write this (16/5) there is a Caspian Tern on UEA Broad. An impressive find by Dave Andrews and far rarer in the UK than the Godwit. Nick the birder wants to drive 2km and see it hawk over the lake that was part of my life for 30 years. However I am in strict, post covid-swab, self-isolation. Breaking this could endanger the surgical team  and/or risk cancellation.  So Nick the cancer patient must stay put and enjoy it vicariously.  Severely gripped off Nick the birder is frustrated he did not see it from the bedroom when it flew to Whitlingham and back! 

The Eagles are Coming!

The title deliberately references the sub-title of JRR Tolkien’s The Hobbit.  A framed print of the original book cover hangs in our bedroom.  A memento of a awesome Oxford weekend in 2018 shortly after Episode Two, when Ingrid and I saw David Byrne’s remarkable American Utopia.  Like the hobbit Bilbo I find myself on an unexpected journey. 

In both The Hobbit and The Lord of the Rings the great eagles intervene to rescue the main protagonists when all appears lost. In real life there are no such miracles. Surgery is intended to be curative – we shall see.  Whatever the outcome, I must recover from and adapt to life with one kidney.  Other challenges may lie ahead, but what Tolkien’s eagles do symbolise is strength and hope.  Qualities that I will need in abundance in the coming weeks. 

My plan for my first post work autumn was to split my time between Batumi and Scilly.  The first looks unlikely and the second in the balance.  However, if Nick the birder returns to Georgia one future September when the eagles are coming through something will have gone right.  And that is something to hold on to.

Booted Eagle (Hieraaetus pennatus) – Batumi, Georgia, August 2019

6 thoughts on “An Unexpected Journey”

  1. Oh man! Fingers crossed for you. I had a blood in urine episode which lasted a few years, but it turned out to be a large, hard kidney stone in the ureter. It was lasered last year – day operation at Spire clinic all under NHS, for which I’m eternally grateful.
    My mum and dad both succumbed to the horrible disease which is cancer, mum at 54, dad at 87. My sister has just been told she’s in remission following radiotherapy for lung cancer, which was stage 4.
    This tells me it can be beaten, and my thoughts and prayers are with you and your will power.

  2. Nick, best wishes for a successful operation and a gentle and equally successful recovery which I hope can involve meeting up. Take care – the road goes on and on

  3. Fingers crossed for a successful operation and strong recovery, Nick – very best wishes

  4. I hope it all went well today. Loved reading your blog – I didnt realise what a fine photographer and ornitholgist you were, and hope you can get back to it soon. Best wishes John

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