This picture is super special to me, for 2 reasons, firstly it’s the last ever photo of beloved Bertie and I, secondly because it’s the last photo of me, being ignorant of the fact that I had cancer .
The date Friday 13th August 2021.
Never been superstitious of dates and I’m still not.
We said a very special goodbye to Bertie at 11.30 in the morning and then at 2.30 in the afternoon, our local hospital called and asked me to come in on Monday 16th, where they handed me a handwritten form called “Cancer Diagnosis Notification” confirming I had a cancerous tumor in my right kidney.
Typically Carol, I had my large notepad asked lots of questions and asked best way and how quickly I could sort this. Consultant kept remarking how positive I was about the situation.
I don’t think I know any other way to be.
The next morning, I was asked to facilitate an urgent business development strategy workshop later that week , so instead of stepping towards the diagnosis, I stepped back. I worked flat out on the workshop and delivered what I know was a great outcome for the client.
The following Monday, with a clear head I made a plan, and over the coming weeks i was relentless about executing it.
I had a “magnificent 7” people who I told. Not family or closest friends, people I knew would be objective with me if I needed it. One, a young mentoring client said “ If anyone can beat this you can and I look forward to seeing you do it”. That was just what i wanted to hear. Challenge accepted.
I had no idea if it was beatable, curable or doable. I was determined to learn whatever i could do whatever it took.
The Isle of Man Urology Consultant was quick with scans, tests and sorting out a clear pathway. He encouraged a quick resolution. My G.P. said the same.
I had private medical insurance so used it, and thus was able to give the surgeon at The Christie in Manchester an excellent baseline.
At every stage I communicated what I wanted to achieve, when and what good would look like if we could nail it. There were caveats. The preferred outcome for me was to have 2 kidneys and no cancer. This was going to be very difficult.
I had input from amazing, skilled, world class, compassionate, clinicians at a time when “living with Covid” cases were growing fast in Isle of Man and England and they were pulled in many directions. It wasn’t all plain sailing, I stayed super focused and determined. I learnt so much in a very short time.
This was my team of Clinical Superheroes..
Dr Steffen Osbelt and the team at Snaefell Surgery
Ade Adeniyi , locum Urology Consultant at Nobles
Dave the imaging radiologist at Nobles
Prof David Nicol, Head of Surgery at The Royal Marsden
Philip Borg, Consultant Interventional Radiographer at The Christie
Aziz Gulamhusein, Consultant Urological and Robotic Surgeon at The Christie in Manchester
Each of these taught me what I needed to know when I needed to know it and did a brilliant job for me at every stage. I trusted them all implicitly.
So that on the 5th October, 7 weeks one day after being handed my diagnosis, I had laparoscopic robotic surgery to remove “all or part of my kidney and tumor” at The Christie.
What looked on FB like a break in Manchester, was us isolating, me being operated on and then a short recovery, then home.
I am now in 4 weeks into the initial healing phase.
I had confirmation last week that the cancer was all safely excised, there is nothing “sinister” in the pathology, I am “low risk” for a recurrence and there are no secondaries.
Not sure you are ever “out of the woods” with this disease and I won’t be complacent.
My kidneys are struggling to recover from the trauma too. I know this will take time and with so many germs around I am being cautious.
Here are 5 of my key learnings:
· Kidney cancer, as in my case, is often an “incidental diagnosis”, by the time you get symptoms of this cancer it can be quite serious. I consider myself very fortunate
· I had never had a scan before this so had no benchmark for when I was cancer free. Given its type & size my tumor was approximately 5 years old
· Not all cancers behave the same so the treatment plans can vary considerably
· Share your hopes and fears with the medical professionals, it helps them decide how to proceed
· Be prepared for your “loved ones” to suffer, almost more, than you. Whilst you are in there fighting, they can feel helpless, fearful and anxious. Ensure they feel part of the process.
Spike Milligan once said he wanted his gravestone to say “I told you I was ill”.
I say that today, mainly to myself..
In March lockdown I started to have intermittent severe abdominal pain that came and went , between then and August I had:
· 2 GP's on phone who diagnosed Constipation
· One locum GP in person who diagnosed diverticular disease
· My own GP who encouraged me to see someone in UK when I was away last June
· Colo rectal consultant in July in UK who found a lesion on the right kidney
· UK Urologist who said leave it 6 months and do another scan
· 3 Clinicians who said you need your kidney removing asap
· Nobles urology team who quickly acted to confirm a diagnosis and extent of the disease
Between 1st September initial call with the amazing Aziz Gulamhusein and 5th October, I had a biopsy in Manchester on 8th, where my flight back was delayed 8 ½ hours and I caught sinusitis and bronchitis for 3 weeks, as a result. I got the result confirming the type of cancer on 20th and booked surgery that day, for 5th October, which was 4 days after I recovered from bronchitis. An incredible 3D model of my kidney and tumor were built and used to plan and undertake the surgery on a robot that was 2 weeks old.
Back in March I knew something was wrong inside me. I started to meditate on it and could describe exactly where the pain was, even though it moved a lot. The trouble is with referred pain, you don’t know where it originates. Looking at a chart of referred kidney pain today, I had all of it.
Lockdown made me slow down, something I’m bad at.
My body sent me a message, I stuck with it and as a result am now in a fortunate place.
Everyone I interacted with is part of the amazing NHS or Manx Health Service.
Their skills, knowledge, and commitment to us patients is humbling. I have seen them under immense pressure and yet they've behaved with utmost professionalism, care and compassion.
We must also never underestimate the amazing strides forward in the treatment of this disease through research, surgical innovation and deployment of new techniques and treatments, on a journey that is very personal to everyone who has it.
As for me, on the 16th August, a phrase from younger clients kept cropping up in my head “it’s a shit show”.
Today, looking back on the last 11 weeks as a Maverick who loves challenge, learning and astounding herself, this has been so far from a “shit show”, its one of my greatest ever achievements. I feel content with where i am, whatever the future holds I'm ready for it.
If you've read this far, thanks, its been important to share this for myself, i also hope it helps others, who may suddenly be handed a similar scenario and mostly to give thanks for and to celebrate the people who were in my corner.
Carol co-creates with others to unlock their leadership mindset for success, by thinking differently, developing their authenticity and being courageous enough to astound themselves.
