Most of my treatment was private due to cover I have with BUPA, as part of my package with Lloyds Banking Group.
Through every step of my journey BUPA were there for me and last week a video of my story played by an actor (Peter) went live.
Below is a link to the video:
http://www.youtube.com/watch?v=m5IMrOg3h04&feature=g-all-u
Monday 18 June 2012
Thursday 14 June 2012
Present, Future & Cognitive Behavioral Therapy
So its Friday 8th
June 2012 at 23:39 and I am watching NCIS that I have Sky +’d and I am writing
my final blog. Its some 27 months since diagnosis and a lot has happened. I
have 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 ever
envisaged.
Late last year myself and
Sean went to see Mike Peters doing an acoustic set in Otley and half way
through his set I got to meet him and have my photo taken with him. The Alarm
was the first band live band that I ever saw and to meet a hero some 28 years
later made up for everything that I had been through and as you will remember
that the last time I saw him was in Leeds with Big Country, some 2 days before
my reversal.
This morning at was at
Spire for my annual CT scan something that I will have to undertake annually
for 5 years….3 more to go and I am scheduled to see Professor Sebag Montefiore on the 20th for
my results.
My Bowel has been playing
games lately or should I perhaps say self induced. It was my birthday on
Tuesday and I went out with Gavin on both Friday and Sunday to celebrate.
Alcohol is one element that even today has its side affects and just a
hangover. My bowel reacts badly to it and since Christmas 11 I have had hardly
had a drop. So 2 days of indulgence resulted in 3 bad days. But now I know what
to expect I can manage it more effectively, with lots of wet wipes and Cavilon
at hand.
Diet plays a huge part of
my life and foods that I had previously enjoyed are no longer part of the menu.
Curry’s and anything spicy are no no’s and alcohol is also pretty much off
limits and when I do have one the next few days can mean frequent bathroom
trips. I deink more water than I ever did to maintain the right balance and to
help things I also take Fibogel daily.
Just before Christmas I hit
real low point. For the past 21 months since being diagnosed, medical
professionals surrounded me, however now I was all alone. I could not 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.
So back to research and bingo I find a course of
treatment that might just do the trick “Cognitive Behavioral Therapy
CBT)”. CBT is a psychotherapeutic approach that addresses
dysfunctional emotions, behaviors, and cognitions through a goal-oriented,
systematic process - Wiki’s definition. For me it was a way of talking through
what I had been through and putting meaning and a type of closure to the
events. Having had Cancer is something that one will never forget and something
that you can’t apply closure to. But to be able to park some of those
experiences away from my day to day
thoughts, will help me to move on.
David
Broadbent at Nuffield Leeds was to be my Consultant Psychologist and something
that I have just realized is that I was to be his last patient just before
retiring, just like I was for Mr Ambrose who retired back in March 2012 when
diagnosing me.
I had 6 eventful sessions
with David and I can’t thank enough for helping me with my issues. It was quite
ironic that for months I had been using the word stool or on occasion poo…..now
with David we went back to basics and we used the word crap….this light
heatedness 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 David’s
help, put me on the right path.
So its now 00:30 on Sat 9th
Jun 12 and Cold Case is on in the background and I can’t stop writing today,
having covered off the final 4 blogs and I am pleased with my efforts.
My approach to life has changed
however I do not treat each day as if it was my last as its 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 as
previous. There are things though that I can’t do that perhaps previously I
could and I have to be mindful when I am out that I know where the toilets are
and that I choose places where I know that they are a standard that is
acceptable in terms of cleanness.
 |
| Mike Peters & me |
I now take an active role
in a number of projects such as being a Patients Voice for “Beating Bowel Cancer”
and I am also involved in several projects for Macmillian’s.
I am also extremely proud
to be a member of the “Stakeholder Involvement Group” for YCR. All of these
activities allow me to give something back to those that have helped and
hopefully using my experiences I can make a difference for others impacted by
Cancer.
As for the future who
knows were it will take me or even for how long….but one positive thing that
has come out 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 for one reason or another and those that have
been there for me, have been truly remarkable.
I look forward to perhaps
writing again in 12 months time to keep you all posted on events, but more
importantly I hope that my blogs have provided an insight into the journey of a
Bowel Cancer patient and I hope that my story may help others with their
journey…in that they are not alone and that there is light at the end of this
very long tunnel J
Alex Kuczera
Sat 9th June
2012
Reversal
Monday 4th April 2011 is
the date set for my reversal under the care of Brendan Moran at The Hampshire
Clinic, Basingstoke. However 5 days earlier I am hit with a bug causing
sickness and diarrhoea and it was decided that we would delay proceedings for 2
weeks.
So Monday 18th
April 2011 is my new date and I travel down on my own by train the day before.
The night before Sean and me go to the O2 in Leeds to see Big Country, with
Mike Peters from The Alarm taking lead vocals.
It was brilliant to see the band some 20 years on and also as an avid
Alarm fan to see Mike Peters take the rein….little did I know that some 7
months later that I would meet him in person.
On arrival at the clinic I
am taken to my room and its great to be back. I am happy and smiling and I meet
up again with my friends (medical team). Brendan pops in late evening to say
hello and to make sure that I am ready for tomorrow. Then it’s the bowel prep
activities and yes…green jelly.
Monday arrives and at
14:00 I am taken to theatre, however events occur prior to surgery. First my
bag decided to burst on its final night in bed……possibly a good bye present….secondly
I hear that Brendan is going to the Royal Wedding that Friday, so I decided to
stick a note to my bag asking if I could go with him…little did i know that the
bag was to be removed prior to entering theatre.
45 minutes later and its all over and I awake
in the recovery room. Was it a success I ask and the nurse smiles back at me
and reply yes. I have never cried once since the 4th March 2010 when
I was diagnosed, but today was an exception. I shed a few tears of joy as for
me this was the end.
Back in my room I was in
some pain following surgery and I was given morphine orally to reduce the pain.
Now a quick look…..gone was my stoma and in situ was a dressing to cover the
stiches from surgery. Later that evening I was given food…..scrambled egg on
toast and my beloved green jelly…
So now having finished my
first meal post surgery, it was now the waiting game…..do you remember how
earlier I said that my reversal was the end…..how wrong could one be!!! It
takes around 72 hours from consumption for the waste product to exit ones body.
So for me Thursday evening would be D day…..however D day arrived a lot sooner
and was not quite what I was expecting.
4 hours of looking at the
walls of the bathroom was not part of my plan and I am so glad for private
rooms with en suite. However the team were glad that my Bowel was starting to
function again after a 7 month vacation and they were looking at sending me
home on Good Friday…..however as by now you will realise that nothing really
goes to plan where I am concerned.
On the Thursday the menu
arrives and I now back to normal food as opposed to having to choose from the
light menu. I decide on couscous with vegetables….what a mistake ….I was
violently ill for over 24 hours and my departure date was put back 48 hours.
Sunday arrived and Sean
Melvin arrived just after 14:00 to drive me back to Leeds. Since my bowels
starting working again, my ability to get to the bathroom in a timely manner
was not great and so to aid things pads are provided. I think that by the time
I had left The Hampshire Clinic, I had utilised their stockpile.
So back home and the
learning commenced and the only similarity I can provide is to that of a new-born
baby. The first 6 weeks had its up’s and down’s with more of the latter. The
bathroom became my primary room and at the times the pain was unbearable. I did
however manage a week in Rhodes for a friends wedding. The week was great,
however a combination of food, climate and water had its toll, but luckily the
journey there and back was event free.
The summer of 2011 was
mixed and there were lots and lots if accidents and tears of pain and on a
number of occasions, I wished that I still had my Stoma. Some 12 months on
things have settled and the good days are exceeding the bad ones, however I
know that I have al least another 12 months before my bowel settles down to an
optimum level.
Help is ample if one knows
where to look and “Beating Bowel Cancer” are one in a million. They provided me
with the practical support that I needed and filled in lots of gaps that were
missing ion my recovery plan. Even of late when I have been unwell, one of
their nurses contacted me at the weekend and I am so proud to be part of a
family that Mark Flannagan (Chief Executive) and his team deliver on a daily
basis.
During July 2011 I had my
first CT scan following treatment and the results were positive. Then during
September 11, I underwent my first Colonoscopy in Leeds since surgery where I
was given the all clear, which means that I do not have to undergo this procedure
for another 3 years. This was huge relief that all the treatment undertaken to
date had been a success.
Chemotherapy Round 2
A few weeks back home and
I went to visit my oncologist Professor Sebag Montefiore to discuss my next
round of treatment. It was great to see him again and he was amazed at how well
I looked and was so pleased that everything had gone to plan during surgery.
There were 3 options that
we discussed and I decided upon the most aggressive one, which presented me with
the best odds of the cancer not returning. This option would entail 6 cycles of
treatment over an 18-week period. However this would also mean that my date for
surgery to reverse my ileostomy would have to wait until 4 weeks after
treatment had ended. This was quite a set back for me as, this meant that I had
to keep my stoma for at lest 6 more months.
It’s just before 13:00 on
Wednesday 3rd November 2010 and I arrive at Spire Roundhay Leeds,
for cycle 1 of my Chemo. I am greeted at reception by Anna one of the Oncology nurses at Spire and I
am taken into the Oncology unit. All though I had seen images on TV before,
this was now for real. My bed was second from the end, left to right and was to
be my treatment chair for the next 18 weeks.
First things first was a
warm drink and to choose a sandwich from the menu for later. Next was a few
questions surrounding my treatment to date and we discussed how surgery went.
My staples were out now and I showed off my scar, which was healing quite well
by now. Next my height and weight measurements were taken and this stats were
to be used calculate the amount of chemo that was to be administered to me,.
Next was the preparation
for Chemo……a cannula was inserted into my left arm and was blood was dawn. This
was taken off to the lab so that a blood count could be undertaken to ensure
that white blood cell count amongst others were at the right levels. It took
about 40 minutes for the results to come back and the all clear was given to
proceed.
In came my bag of Chemo
from the Pharmacy that had been specially prepared for me. Two of the nurses
checked the details before it was hooked up to a machine used to administer the
rate of delivery into me via the cannula.
It took just 10 minutes to
feel the affects of this treatment entering my veins. I should be used to
having needles and drugs administered into me…but this was so so different. If
we say that saline is a mild encounter, this was like having extremely strong experience
and I could feel each drop entering my body. During the 2 hours it took to
administer, a pharmacist arrives with a huge bag containing my oral
Chemotherapy prescription, nausea tablets, mouthwash and a digital thermometer.
Each cycle of chemo is a mixture of Oxaliplatin,
which is administered through the vein, followed by a 2-week course of Capecitabine
tablets, which are taken twice daily prior to food. Then it’s a week off before
the next cycle commences. Side affects such as nausea can occur, hence the
medication and one needs to take their temperature twice daily. The reason for
this is that chemo can cause infections and if I was to start with a high
temperature, then I may need to be omitted onto a ward for observation.
I am so glad I
went by taxi as at 16:30 I was now ready to go home and I was absolutely
shattered and the side affects of treatment were starting to surface. The first thing to hit me as I left the
hospital was my throat suddenly becoming sore as I hit the cold air, shortly
followed by numbness and tingling, with the latter to last for the next 18
weeks.
Small day-to-day
tasks like getting a glass of water to getting milk from the fridge became challenges
and to provide aid gloves were worn most of the time and along too came my hat.
Another side affect of Chemo is hair loss, however as I had always shaved my
hair my head became another exit point for heat and the hat provided warmth.
The first cycle was not
too bad, however cycle 2 onwards was difficult and pain was another issue to
deal with. The arm, which Oxaliplatin was administered through, became
increasingly painful and I used on most days a Lavender Heat Bag to manage the
pain along with pain relief. The first 3 days after the Chemo is administered
through the vein are the worst, with tiredness and nausea hitting its heights.
Then as the week progresses things get easier and more manageable.
The worst time
was during cycle 3 when I was due to commence treatment Wed 15th Dec
10. This would mean that by Christmas eve my energy levels would be improved so
that I could enjoy Christmas and the New Year. However bad news soon arrived when my blood
count results came back low. This was a huge set back as this meant having to
delay treatment.
A second test
was undertaken the following Monday and again the count was low and I decided
to book myself in again on Thurs 23rd Dec 10, with the knowledge
that Christmas would not be much fun. The results cam back fine and I had to
decide to go ahead. The next few days were worse than normal, as it was
extremely cold outside, plus I was now ½ way through my treatment and the Chemo
was definitely having its affect on me.
On Christmas
day I got up about 11 and opened my presents with the family. I had a light
breakfast and then went back to bed to rest until lunch was served. I managed to change before
lunch, but was soon back in my PJ’s and stayed in bed for the remainder of the
day.
By New Years Eve the
affects had started to wear off and off I went to Gavin & Vicky’s for our
traditional NYE celebrations. This year they kindly toned down activities and
we went to their local for Pie and Mash and then back to theirs where we played
poker…..and buzz on the PS3…and yes Gavin wins again…….
My last cycle commenced on
Fri 4th Mar 11 and by Fri 18th Mar 11 it was all over.
All in all some 19 weeks had now passed and my treatment was finally over. If I
had to choose between surgery of chemo….surgery would win hands down for me.
The pain and discomfort endured during those weeks will remain in my thoughts
with me forever.
I did however receive a
hard word from the oncology team one Friday, after some dental treatment
endured endless bleeding. Luckily the dentist managed to stem the bleed and
after a call later that evening from a worried oncologist, I apologised
profusely for my actions and promised never ever to do that again…….”I forgot
that Chemo affects the white blood cell count which means that clotting can
take a lot longer”.
Recovery & Stoma Support
The journey home by car was tough and some 4 hours
later I am finally back at home. Moving from a hospital bed to my own was difficult
at first to adjust to and so was being on my own now. Mum was great and friends
rallied round, but having to manage my recovery was my job now. For over two
weeks I have had available to me 24/7, an excellent team of medical personnel,
attending to all of my needs, but now its down to me, to get through this next
stage.
One of the biggest challenges ahead in addition to
the management of my stoma was the recovery path from surgery, both physically
and mentally. The first week was a
difficult and there were many sleepless nights due to pain/discomfortness. Some
nights it was easier to sleep on the sofa, whilst some days I just did not feel
like getting out of bed. I was tired not just physically but also mentally.
Days were bearable but nights were tough and I had to use on occasion sleeping
tablets to get some peace.
Prior to leaving hospital, I had a handful of staples
removed to allow some excess liquid to be removed. This now left a semi open
wound that needed to have its dressing changed every other day. My GP arranged
for the services of the district nursing team to undertake this activity and lets
say what a difference I found between private medical care and the NHS.
The nurses that visited me at home were great,
however the management side of things was not the best and there were numerous occasions
when appointments were missed and the excuse given that there was no diary
entry for me, resulting in a nurse having to be sent out late at night. The
whole experience brought on unnecessary levels of stress, which at a time when
I was trying to recuperate, could have easily been avoided.
During the first week at
home, my Stoma was causing me some issues in relation to skin irritation and
also adhesiveness. I contacted Mr.
Botterill my consultant in Leeds and he put in touch with the Stoma nursing
team at Leeds General Infirmary. Therese and her team were amazing and after
numerous visits to see them, they finally got me to a position where I had a stoma
that fitted and barrier creams to address my skin irritation.
This was a huge relief for me and I was extremely
happy now…….the stoma plays a huge part in ones life and having one that fits
is just like having the correct sized washer on a tap. The wrong size cause
leakages and on a number of occasions I had accidents, either from this or when
the bag burst. At first it was so embarrassing and the washing machine was on
overtime, but the embarrassment soon turned to laughter of “oops….I have just
had a little accident”. One of the
funniest occasions was when myself Gavin and Jason went to an Indian
restaurant. We had just got past the starters when it happened. The staff were
great and packed up our mains as a take away so that I could get home for a
clean up.
The introduction of the stoma was life changing and
maybe not too dissimilar to perhaps changing a babies nappy. On average the stoma
had to be emptied 6 times a day and this also having to get up in the middle of
the night and depending on one’s diet, this could increase by two fold. However
a secret item to combat looseness is Marshmallows….I believe its the gelatin
that helps to reduce the liquidity.
Mums take a baby changing bag for trips out….I had a
Stoma bag containing several stoma’s, cloths, stoma removal spray, soma
cleansers and little black bags for the disposal of used stomas. Ordering of
supplies was seamless and was just a one-phone call away, with courier delivery
within 48 hours.
One of the things that also came more into play now
was my NHS medical card. Being a Cancer patient entitles me to free
prescriptions for 5 years which is a god send for cancer patients as during the
first 6 months post surgery, my illness could have cost well in excess of £100
per month for medical supplies.
Surgery
So it’s the morning on Saturday 11th
September 2010 and I am up early, as today I will be travelling from my home in
Leeds to The Hampshire Clinic, Basingstoke to prepare for surgery on Monday.
Sean and Jo are taking me down by car with Saranne
their daughter and we are meeting my at the VW dealership near Elland Road as I
am leaving my car in storage. I am not really a MacDonald’s fan but a bacon
muffin and latte sounded good.
The journey down was fine and we arrived at the
Clinic shortly before 16:00. On arrival I joked with the receptionist that I
had a reservation for 14 nights…just like a holiday and I was escorted to my
room on the 1st floor by the nurses station, with the only name on
the door being that of my Consultant Surgeon “Mr Brendan Moran”.
Forms completed, bloods, weight and height taken it
was now time for my tea which consisted a beef extract, black coffee and green
jelly…in fact it seems that chef was a fan of green jelly as that was the one
and only flavour on the agenda.
On Sunday Brendan popped in to say hello and to make
sure that I was comfortable and to answer any pending questions. Sean & Jo were great and extremely supportive
from day 1. For Saranne it was an adventure and she kept the nursing team entertained
for days. Mr Wilson my anaesthetist cam
in to see me and we discussed pain control options and decided on an epidural
being the best option.
That evening my stoma nurse arrived to measure me up
for where the stoma is to be positioned. This was also the first time that I
saw a Colostomy Bag and the nurse provided a demonstration as to how one
manages it. This was too much, as within 24 hours I would be doing this for
real.
14:30 is my scheduled time for surgery and having
completed all my pre surgery prep activities, its not long before I take the
walk down the corridor to theatre saying good bye to Sean, Jo & Saranne.
I was in surgery for just over 3.5 hours and at around
19:00 I awake in the high dependency unit. I have my own nurse and of course
the first thing I ask was how did it go…a success I am told and during the 3.5
hrs I lost no blood and am told that Mr Moran is extremely pleased with how
things went, which put a smile on my face.
I don’t really remember much more about the 18 hrs I
spent in the unit. Jo & Sean came into to see me and that pleased me lots.
As I was in Basingstoke some 200 miles from Leeds there support was amazing and
they were each allowed 10 min with me. Sean then went off to call my mum and
text friends and colleagues of my progress.
Once back in my room, I am stating to come round a
little more and the realisation of it all kicks in. I have a central line in my
neck that is hooked up to a machine to administer morphine. In addition I have
a chest drain, a catheter, a line for fluids, a nasogastric
tube which goes down my nose to stop me from being sick and of course my
stoma…….which I did not look at for a good few days. 32 staples down my chest
from the bottom of my rib cage to my abdomen.
The next few days had its up and down’s and I think it was early
Wednesday when I got out of bed for a brief walk to the bathroom. It was then
that I saw my stoma for the first time and I was assisted by my stoma nurse in
how to manage it. It was probably Sunday before I had the courage to go alone.
Sean & Jo left late on Tuesday for their journey back to Wakefield
and late Wednesday I was feeling really down. I spoke to Sean that evening and
unknown to me on Thursday evening Sean was back in Basingstoke and I was so
please to see him. I think the change in drug management was part of it and
also the reality that it was going to take some time for me to recover from
this ordeal.
 |
| My First Meal Post Surgery |
The only issue I had post surgery was hick up’s. Imagine 32 staples and
hick up’s….not a great combination…and we tried every remedy and old wives
tails going…for over 10 days before the house doctor found a tablet that
finally worked. Brendan joked as he had never experienced anything like it
before in all of his years. I think it was Thursday before I was allowed to
have a light meal. Scrambled eggs on toast with fruit was my first meal,
shortly followed that day by pasta. Having not eaten for some days, it was like
having a birthday meal…..
By the weekend most of the tubes had been removed with the exception of
my central line and catheter, which were, both removed on the Saturday. Sean
Melvin was the first visitor to come and see me and it was great to catch up.
Then Gavin arrived and stayed with me until lunchtime on Sunday. By Sunday I
was more mobile and was walking up and down stairs. Mum was being brought down
by Kathryn and Aunty Kathleen and they arrive dust before 14;00. I met them all
in the car park and they were amazed to see me up and about.
It was during week 2 when Mr Mohamed one of Brendan’s
team came into see me to discuss the events post surgery. When they took the
tumour out they found one glowing lymph node and it is at this point that I am
told that I had stage 3 Cancer. Their recommendation was for me to have some
aggressive Chemo and they write to my oncologist with their findings. This will
mean that I will probably have to keen my stoma for at least 6 months.
Sean and his brother Pete came that Sunday to take me
home and I was so pleased to leave so that I could be back at home with family
and friends. In total I had stayed some 15 nights at The Hampshire Clinic and
the whole experience was one that will never leave me. From the surgical to the
nursing teams and also all the guys behind the scenes, I cannot thank them
enough for the care and support they provide me during my stay.
The Summer of 2010
Chemo/Radio had completed I had a 3-month break
before surgery. One may ask why so long but my surgeon and oncologist
recommended a period of rest from the treatment that I had just
completed….giving time for the body to rest and recover before its next ordeal.
At the beginning of July I had my second round of MRI
& CT Scans with follow up visits to my Oncologist Professor Sebag
Montefiore and Mr Brenda Moran, my consultant surgeon in Basingstoke.
The news is favourable that the tumour has shrunk
following treatment and both were impressed as to how I had taken to the
treatment and how well I had recovered. I was told to rest and enjoy the
summer. It was at the end of July that I decided to finish work. All the way
through treatment with the exception of the odd I worked, but now I needed some
time to prepare both physically and mentally.
The Lake District is one of my favourite haunts and a
trip to The Drunken Duck near Ambleside for lunch was my treat……and the
opportunity to take my new toy for a test drive….my new shinny VW Scirocco
which got to pick up on the 1st September with my friend
Marlon.
The car was something I had longed for and now in my
hands it was my inspiration to get through surgery so that I could get my hands
behind the wheel again.
Tick tick tock…..normality when surgery is just days
and weeks away is hard as each day there are thoughts of “what if” and even
though my surgical team have undertaken this procedure countless times, I still
have reservations especially those surrounding whether my ileostomy will actually
be temporary. I suppose I am powerless to answer that and it will be down to
the surgical team to map out my future. A 3 ½ hour procedure that will map out
the quality of life for me.
On reflection now the word death apart from once has
never really entered my mind-set and my approach to dealing with Cancer has
been a positive one. No tears shed, no bouts of anger never surfaced and my
main fear was life with a Stoma.
The summer was a time to reflect, but also a time to
make sure that I was mentally prepared for the journey ahead. You may bow have
seen how I use the word journey to discuss my treatment for Bowel Cancer. What
I have tried to do is take you through the events as if you were sat facing me
having coffee…providing you with the opportunity to have an insight into what I
covered in a 2 year period, with the hope that it may help those who are to
embark on the journey or for those supporting others.
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