Posted on: April 5, 2021

Patient Perspectives: Ken

Thank you to Ken for sharing his incredible story with St Mark’s Hospital Foundation for Bowel Cancer Awareness Month. With over 42,000 people diagnosed with Bowel Cancer each year in the UK, it is more important than ever to break down any associated stigma when it comes to talking about bottoms, bowels and toilet habits.

“7 years on!”

April 8th 2021 is the 7th anniversary of my surgery at St Marks, an event that not only saved but has  changed many aspects of my life.

In June 2013 I was diagnosed with Colorectal Cancer, following the many examinations or intrusions as I joked at the time, I was told that I had a substantial sized tumor in my rectum. I was given the news alone by, a doctor and 2 nurses whom I had never met before. I’m sure it was as difficult a discussion for them as it was for me!

Reflecting now it’s clear from the moment you hear the word Cancer, what follows becomes no more than a mumble of words from frankly faces you don’t know or could never recognise again and I don’t recall ever seeing them again through many following visits!  It’s a moment I wouldn’t want to experience again or wish on anyone it’s truly frightening and completely surreal.

Your mind is then nothing more than an emotional time bomb, confused about who you should or need to tell and at that point what you actually tell them, “Hi I went to the hospital today and was told I have cancer” the first thoughts for everyone is nothing more than “is it terminal and how long have you got?”

From this point panic and the emotion takes over, both your own thoughts and those of the people you have told don’t come out as words, but as the tears and fear of the possible events and potential outcome ahead.

The next few hours, days and into weeks are a blur that is filled with a quest for information, what’s happening, what do I need to do, what do the doctors need to do and if I’m honest are they doing it?

You scour the web in search of information, you retain the positives and reject anything that’s negative, you read stories of miraculous recoveries from what you feel are far worst diagnoses than the one you have, but the real truth remains that you’re not a doctor and you really don’t have a clue.

At that point for me it was more about accepting the magnitude of a Cancer diagnosis and working through the scenarios both positive and negative, while getting my mind prepared for the possible eventualities. Fortunately I was more than well enough at this point to carry on working and that certainly helped me to focus for part of my day on something different.

The local hospitals after various consultations and further examinations had decided a course of action, starting with surgery to form a Stoma, this would be done prior to the also planned Chemotherapy that I was told would be required. With the surgery done and a recovery that was pretty good. I was fortunate enough to have a great specialist Stoma care nurse who’s help, support, encouragement and source of  information was a massive boost through this initial part of I hoped would be a successful treatment plan, I can’t thank Julie Smith enough.

For my family, friends and myself things were starting to happen and that was what we needed. The most difficult and possibly under estimated part of all of this is the psychology of it all. You can be physically fit and in great shape, but it’s firmly my belief that without your mind being in the right place,  it would be an even bigger struggle, if not impossible to keep focused on the positive (but still really unknown) potential outcome. You would be totally consumed by the negative aspects with constant thoughts of life after your death for your family and friends.

One major thought that has to be dismissed very early is the question why me? The reality is actually not a difficult answer, Why not , what makes you so special, because you feel you’re a stand up decent guy, well I’m sure cancer makes no distinction good or bad, you have it and you have to deal with it first in your mind and allow the doctors to do their best and keep faith.

Now we have a plan, first surgery and stoma sorted, the consultants and their team (I now know as an MDT), move towards phase 2, and I’m preparing myself for the Chemotherapy. The First consultation at the Chemo clinic I’m basically told I’m not a candidate for Chemo due to my Crohn’s and told to wait till the clinic ends for a further discussion. For the second time a nurse who I have never met before, starts to talk to my wife and I about palliative care. I can’t explain not only the shock of that but also the frustration and even fury that overwhelmed my wife and I.

While there were many conversations at home and of course with the hospital team, I remained resolute that there must be something that could be done, I felt well and the stoma had helped me, and as man with Crohn’s since I was 21, there was actually a thought that a stoma could of saved me a lot of pain and illness over the last 32 years!

After a lot of consultations and if I’m honest considerable pressure I was offered to be referred to either the Royal Marsden or to St Marks. A simple decision for me, as I was fortunately aware of St Marks and there specialist reputation for research and care in bowel disease generally.

By now it’s November 2013 and I attend my first consultation at the complex cancer clinic, a name that strikes fear in itself. I met Mr. Ian Jenkins and his team, obviously this team make me aware that they will need to do their own testing and imagining.

For me in looking at the CT and MRI scans for possibly the first time with the team explaining, I actually hear what I actually have is a “T4 mutinous adenoma carcinoma of the rectum, “which again means very little to the untrained ear. When it’s explained in conjunction with the further questions asked and the look on the teams faces you really do understand exactly how severe the situation is. We knew that if this team at this hospital couldn’t’t do anything then the reality was little could be done and it was time to get your things in order.

We left we did all the tests required and we had an appointment for the results and the potential outcome. On the day my wife and I arrived early enough to sit in the small refreshment area having a cup of T, I recall this is if only because it was the most frightened I have ever been in my life, when my name was called I couldn’t’t stand up my legs were jelly my mind frozen with “this is it Ken” completely overwhelmed, in fact I have tears as I write this even now!

My fear and apprehension was too difficult to hide and sensing this Mr. Jenkins greeted me and said you’re doing well and a comforting arm post a further examination. Fortunately the St Marks team had an action plan, they would talk to the Cancer Centre at Northampton and arrange a 7 week course of Chemo radiotherapy followed subject to a suitable response to this treatment 12 or so weeks later with surgery in a hope that both would do the job. We wanted action and we got it, would it prolong my life or cure me at this point either was a positive!

The team went to great lengths to explain the possible outcomes, the actual severity of what was major surgery and the fact I would have two stomas as a permeant feature. Now there was a new plan and some hope, this was still subject to lots of other things happening and my response to the treatment plan, but to be really honest at this point all you want is hope. You become tired of the worry and the not knowing and just crave a conclusion, even if it’s not the right one. My family and I were worn down and while well-wishing family and friends would call after every visit to the hospital for more news, I’m sad to admit you become tired of answering the obvious questions with uncertainty about a plan and an outcome, however at least now there was a new plan.

The effects of Chemo radiotherapy are well documented and unique to each individual, mine was tolerable and much better than I had feared, would I do it again absolutely not, but it was a necessary means to hopefully a positive end. I completed my 7 weeks on New Year’s Eve 2013.

My next review / consultation was in March so time to rest and recover and hope! I actually went back to work and did a few days a week but it helped me recover and keep my thoughts on the positive stuff rather than to sit at home waiting. March felt like it was the 6 month of the year I was

Tired of waiting and still not knowing. Then I had more imagining carried out and my wife and I went to see Mr. Jenkins and the team at St Marks. There was good news the Chemo Radiotherapy had had the desired effect and my cancer had reduced in size sufficiently to at least allow the surgery! From here in a few days I was told that the surgery was scheduled for Tuesday 8th April and I would need to be admitted the day before. Great news more hope and more mental preparation.

April 7th my wife and I arrived and I was admitted early evening, it was explained once again that the surgery was substantial and the immediate recovery time in hospital had to date, ranged from 18 to 30 days and there would be no point in Andrea visiting till earliest Thursday as I would be to coin a phrase “out of it!” Living 70 miles away it was good advice and at the same time a difficult good bye!

I went down to theatre early the next morning and understand that 13 hours or so later I was taken to the High dependency unit, I don’t recall anything until the next day I woke to the sound of someone in pain and feeling like I had been hit by a bus and I couldn’t move without it hurting and my mouth was really dry. It felt like almost as soon as I woke the Physio team were there asking me to walk across the unit, I’m sure it was longer and with their help, encouragement and expertise I managed to walk slowly to the door and back exhausted!

Mr. Jenkins had personally called my wife to say it had all gone ok and that I was ok and further test would be done before they could realistically say what the outcome maybe. A relief to see my wife on the Thursday afternoon and really emotional.

By Saturday I was back in Frederick Salmon ward with a great team of nurses looking after me and a couple of really nice other guys in the ward with me. Each day there was progress I could walk around make myself cups of tea and I could eat ok visitors made the time pass and the doctors rounds each morning allowed me to ask questions and explain how I was feeling.

I was discharged not because of my request but because I was deemed ready to go home on Saturday 19th April another really emotional day leaving the safe and secure surroundings of St Marks and being told that if anything felt remotely wrong I had to go straight back there.

Now with two permanent Stomas a tummy full of clips, I had a local district nurse and Julie Smith my stoma care specialist visiting everyday which really did help me a great deal with my recovery, understanding and just general attitude towards everything that had happened. I recall sitting and taking a call from Mr. Jenkins later the following week telling me that the results of the tests done during and post-surgery showed that the cancer had been completely removed and I was on the road to a full cancer free recovery! What a call I can’t start to explain the relief, euphoria and overwhelming emotions I felt immediately and the urgency I had to tell the world but only after first telling my family.

From that point the immense gratitude and respect I felt was another really emotional experience, Mr. Jenkins and St Marks had saved my life and allowed my family and I to move forward once again having been in a state of totally numbness for 10 months that had felt more like 10 years of uncertainty, worry and most of all hope that this day would come.

7 years on, the consequences of the cancer and its treatment remain, yes there are certain differences, these while an inconvenience can all be managed with a bit of planning and thought.  For months and even into the years afterwards, emotions remain high and both my family and I remain really sensitive if only to certain things or situations, which are unpredictable and appear irrational but they are there constantly.

I can’t turn the clock back so, while I will always be a person whom cancer has touched and changed, I’m actually Ken Elavia a son, brother, husband, father, grandfather and hopefully a better person for the experience.

I would like to say in saving me, I have managed to change the world or contributed something to the greater good, the truth is that’s not the case, however it changed the world for my family and myself in a way that only  others who have experienced a similar life changing event can really understand or share.

Hopefully with many more years ahead I can continue to keep well and watch my family grow up. The gratitude I have for all those involved in saving my life can’t be covered by a small word like thanks, I sincerely hope that through all my meetings and conversations with the team at St Marks I have made it abundantly clear just how grateful my family and I are.

Ken pictured with his wife Andrea

Ken pictured with his 3 grandchildren out on a country walk