I first noticed that something wasn’t right on my birthday…
Colorectal cancer and my diagnosis at age 41 – my story, by Alex Kuczera
I thought I would take the time out to share my recent experiences of dealing with colorectal cancer with the hope that my experience may help those that have been recently diagnosed with the illness.
I also want to encourage people of all ages to become more aware of bowel cancer symptoms and promote the message that if you think you have symptoms – such as blood in your stools, bleeding from the bottom, a change in your bowel habit which continues for at least four weeks, or lumps or pain in your abdomen – get them checked.
The beginning of the Journey – symptoms
June 2009: on a warm evening I headed out to celebrate my birthday with friends. I’d been to the bathroom before leaving the house and the only reason I remember this is because I had a drunken conversation with one of my mates about seeing blood.
I’ve never been one to check my stools, however on this occasion I had a peep – as you do – to make sure all was well. On this day it was, apart from some bright red blood on the toilet paper. This was a little unusual for me, particularly as my bowel movements had been normal that day so there was no obvious reason for the bleeding.
I was a little freaked out but not overly concerned and my mate and I decided that as it was only a small amount it was either soreness or perhaps piles.
July 2009: a month later there hadn’t been any more blood, but I did start to experience a change in bowel movements. I went from being relatively regular – once or twice a day – to going to the toilet up to seven times a day, always with the feeling that I hadn’t quite emptied my bowels. Most of the extra trips resulted in stools that resembled rabbit droppings and although it was unusual I just thought it might be a combination of my diet and age.
December 2009: even so, when this continued I visited the doctor. An examination of my back passage and it seemed that everything was normal. We discussed the options and decided to wait for the results of an upcoming health check to see if anything showed up.
Thursday 4 March 2010, 10:43am: a date and time that I will never forget – diagnosis
February 2010: when something did ‘show up’ – that my blood count was low – my doctor suggested seeing a colorectal consultant.
March 2010: a third examination showed no obvious problem but to be 100 per cent certain my consultant booked me in for a colonoscopy – where a camera is passed into the bowel to check the lining of the large intestine.
Thursday 4 March and the colonoscopy detected a tumour and confirmed a diagnosis of colorectal cancer. I was told that I had early stage 3 cancer, although there was some good news – that the tumour was the primary source and no secondaries had been discovered.
But my consultant then informed me that, due to the position of the tumour and its advanced stage, I would have to wear a stoma for life.
I was lost for words.
Plan B – a second opinion and I find my saviour, my new best friend… Mr Brendan Moran
A friend who’s a nurse did some research and we arranged to see an oncologist who suggested getting a second opinion.*
And further research led me to my saviour, my new best friend…. Mr Brendan Moran, Consultant Surgeon at Basingstoke.
Mr Moran’s prognosis was that he was 80 per cent certain that he would be able to remove the tumour – and carry out surgery to enable a stoma reversal at a later date.
I discovered soon afterwards that I had one of the best surgeons in the UK, because in the summer of 2010 Mr Moran was made Clinical Lead for the Department of Health’s low rectal cancer programme.
So much to take in, in such a small period of time…
Treatment – radiotherapy and chemotherapy tablets
My treatment plan was for 25 sessions of radiotherapy plus chemotherapy tablets. Treatment began on Friday 30 April and ended on Monday 7 June 2010.
Radiotherapy wasn’t too bad, apart from leaving me feeling tired and burning my bum. I was able to work all the way through the treatment period, with work incredibly supportive and letting me have time off on the occasions I felt ill or tired.
My surgery was scheduled for Monday 13 September 2010 at 14:00 and I was told it would take approximately 4 ½ hours.
Having had knee surgery a few years previously, I pretty much thought that I knew what was going to happen.
How naive I was.
This was major surgery and the next two weeks was to become a huge turning point in my life… something that would scar me both physically and mentally for life.
The 48 hour period leading up to surgery involved rest and tests and fasting. Well I was able to have liquid and a clear soup and green jelly. Yes green jelly with no other flavours available. Took quite a liking to it, but will probably pass on the soup in future.
On the Sunday I met my anaesthetist who took me through the events of the next day and the stoma nurse.
This was the first time that I’d seen a stoma and gone through how it works and how to manage it.
I think that’s when it sunk in that this was reality and there was no going back.
On the day of surgery I was pretty much relaxed, although on the walk to theatre the nerves kicked in a little.
In the pre-operation room I was greeted by my anaesthetist, had wristbands attached, a cannula inserted in preparation for my anaesthetic and an epidural for pain relief post surgery.
Next came the countdown, starting from 10, 9, 8….
I awoke just after 19:00 in the HDU (high dependency unit). I was drowsy but had my wits about me.
I learnt that Mr Moran and his team had been able to remove the tumour and re-join the back passage so that a stoma reversal could be undertaken at a later date.
It was the best news I could have wished for.
The next 12 days post surgery was, let’s say, a touch challenging. As well as managing the stoma, I was still in pain and discomfort and due to the release of a few staples a few days after surgery I had a wound that required the services of the district nurse team back home in Leeds.
Although there were no visible traces of cancer cells, I’d been advised to take the ‘belt & braces’ approach and have a course of chemotherapy. That meant that the reversal of my ileostomy would have to be put on hold, until chemo had ended.
I was very disappointed, but realised that waiting a few more months would not be too long to wait, especially as I knew the benefits of chemo…long term for me.
My first visit back to Basingstoke post surgery was on Monday 1 November 2010 and my recovery progress was good. An extract from Mr Moran’s note to my oncologist starts with “I saw Alex Kuczera in outpatients and he was bouncing around the place…”
Chemotherapy started on Wednesday 3 November 2010 and was to last 18 weeks. The treatment works in three-week cycles.
Day one involves a visit to the hospital where firstly a full blood count is taken. Once the results have come back and the nursing team is happy, an intravenous dose of chemotherapy is given, taking approximately two hours to administer.
For the remainder of the first week and all of the second week chemo tablets are taken twice a day, with the third week used as a rest week and for a visit to the oncologist. This was to check on my well-being and to ensure that I was ready for the next cycle.
And the cycle restarts.
The first five days post chemo is the worst, with a constant feeling of tiredness and feeling unwell in general accompanied by various side-effects.
Side-effects can vary from person to person and I suffered in the main from pins and needles (feet and toes) and nausea. The pain at times was immense and as my treatment commenced in the winter it seemed a lot tougher. Things most people take for granted, like picking up a cold drink, were unbearable at times. Also drinking cold drinks was painful as my throat felt like I was swallowing chunks of ice at -10.
However a good pair of woollen gloves helped as well as a hat and scarf…
The 18 weeks scheduled for chemotherapy turned into 20 as two blood counts over the Christmas period were not at the right levels.
That meant commencing a treatment cycle on 23 December 2010 and spending most of the festive period in bed.
Let’s say that I cancelled Christmas and it was probably the first time I felt really low. Whilst friends were out enjoying the festivities, I was home alone.
The last cycle took place on Friday 4 February 2011.
I cannot thank enough the medical staff for the help and encouragement I received during such difficult times. End to end they were there 24 x 7 and although it was tough at times, I knew that the treatment would potentially save my life or at least offer me a prolonged length of life.
Wow…life and living…probably the first time I had looked at it in that way. All the way through I had treated the treatment plan as a project… a part of my life which for the first time had required me to obtain the services from a team of medical professions to help me get out of the dilemma and to date they had achieved the objectives.
So the journey nears its end: ileostomy closure – the final part of the jigsaw
On Monday 18 April 2011 I underwent surgery for an ileostomy closure. Surgery lasted about an hour and I awoke to the news that the procedure had gone to plan and that my bowel had been re-joined.
My stoma had been removed and I was left with five hand-made stiches, which would be removed locally by the nurse at my local GP.
I sent a text to friends to update them with the following words,
“Bag less…Patient doing well”
The pain was not too bad and before long I was back in my room. I did try to get up for a number 1 but was in some discomfort, so decided to stay in bed and use a bottle. However, by 20:00 I was up and about and able to use the toilet normally.
Tuesday arrived and I was starting to feel like me again, although I was suffering with stomach cramps and the area surrounding the wound was causing some discomfort. No food for the day except jelly and a clear soup as I had to wait for my bowels to start working and the first sign of this would be the passing of wind.
Wednesday 20 April 2011 and at 06:40, yes it happened…wind passed.
What a relief to know things were getting back to normal inside and I was able to eat.
The next stage was to pass a stool and I was finally discharged and allowed home on Easter Sunday.
The 12 months from the end of treatment, to April 2012
At times those 12 months were as challenging as the treatment period.
During the first four months I averaged 10+ trips to the loo a day with lots of accidents along the way. Pain was a major issue at times and there were tears and thoughts of wishing I still had my stoma.
But in September 2011 things started to calm down. I was by then back at work full time, having returned in June on a three-day week. I even managed a holiday to Rhodes for a friend’s wedding, although a combination of climate and differences in diet resulted in endless periods in the bathroom.
In July 2011 I had my annual CT scan and was given the all clear and in September I had my annual colonoscopy, which again was all clear.
I knew that it was certainly not the end and that I would need yearly scans and colposcopies.
But at that time I was cancer free.
27 months on from diagnosis, June 2012 – looking back on a low point, cognitive behavioral therapy, and looking to the future
In October 2011 things started to go downhill a little. I was starting to feel tired, alone, frustrated and very low and just before Christmas I hit a real low point.
I’d been looking forward to Christmas 2011, particularly after my experience of Christmas 2010, and was able to go out with friends. Although I did not over indulge, I did have quite a few pints of Guinness and Christmas Day and Boxing Day were write-offs. For the remainder of the festive period I did not have another drop.
After a drink on Friday 21 January 2012 I again suffered for 48 hours afterwards and so that was the last time I had alcohol for a while.
I didn’t really miss it, although to be truthful I hadn’t been out socialising much.
Anxiety and a lack of confidence had reduced my outings. I am not saying that I was house-bound, but the thought of constantly having to go which had happened on occasion had blocked my social diary. What was bizarre at times, was that I could have a week of being fine, but as soon as I prepared for a planned evening out, my bowels decided to play games.
For 21 months since being diagnosed I had been surrounded by medical professionals, but then found myself alone. I couldn’t quite work out what was happening so a visit to my GP put things into perspective. I was struggling in the main with emotions and after everything that had happened, this was not unusual.
I had never had a serious illness before and never wish to again, but for a bowel cancer patient the journey is much longer than I could have imagined.
Six sessions of cognitive behavioral therapy helped enormously to put the previous 18 months into perspective and also understand the retraining that was ongoing between my brain and bum.
Having had cancer is something that one will never forget and something that you can’t apply closure to. But I realized that to be able to park some of those experiences away from my day to day thoughts would help me to move on.
It was quite ironic that for months I had been using the word stool or poo and with my consultant psychologist we were back to basics with the word crap. This light-hearted approach helped me get through things and using methods such as discussion and case studies put things into perspective. I still have a way to go but this has set me on the right path.
Diet plays a huge part in my life and foods that I had previously enjoyed are no longer on the menu. Curries and anything spicy are no-nos and alcohol is also pretty much off limits. When I do have a drink the next few days can mean frequent bathroom trips.
So it’s now 00:30 on Saturday 9 June and Cold Case is on in the background.
My approach to life has changed since having cancer. However I do not treat each day as if it’s my last as it’s not.
My outlook is that I have beaten this disease and I am positive that it will not return.
But if it does I will be prepared and will tackle it with all the enthusiasm I did before.
I now take an active role in a number of projects such as being a Patient’s Voice for Beating Bowel Cancer and I am also involved in several projects for Macmillan. In addition BUPA have recently made a video of my story under the alias “Peter’s Story”.
I am also extremely proud to be a member of Yorkshire Cancer Research’s Stakeholder Involvement Group and to support Pelican Cancer Foundation.
All of these activities allow me to give something back to those who have helped me, and to use my experience to make a difference for others impacted by cancer.
As for the future – who knows where it will take me or even for how long. But one positive thing that has come from this experience is that I met some wonderful people and have made some new friends. During my illness for one reason or another some friends have withered by the way side, and those who have been there for me have been truly remarkable.
It has been a challenging and eventful period and prior to being diagnosed with Cancer, a serious illness for me was Man Flu….
I hope that my story has provided an insight into the journey of a bowel cancer patient and may help others facing the same situation.
They are not alone and there is light at the end of this very long tunnel.
*Pelican does not give patient advice, but would remind patients that, as some find it embarrassing to do so, it is perfectly acceptable and normal practice to request a second opinion.