Profile

Cyclo64

Regular user
Male 57 y.o.
ABOUT ME

Hi I’m Paul and I got diagnosed with bowel cancer in Jan 2021.

I classed myself as a really fit 56 year old who basically loved competing in sport ever since I was young.
I loved endurance sport because of the challenge it presented I didn't realise by the end of 2020 I would be involved in another form of endurance challenge !
I would guess when I think about it the start was probably just over a year ago as I noticed regular blood in the poo. Went to the doctor he carried out and examination and I got a stool sample test ( the old test FOBT?) and this came back negative so I put it down to Piles which I have had on and off over the years.
Fast forward to December 2020 still getting the blood in the poo but also mild stomach ache. Ironically speaking to my doctor during the lockdown became easier as he just rang me when he was free ( maybe one for the future telephone appointments are as useful sometimes as those in person ).
I described my symptoms - irregular bowel movements / blood / mild stomach ache etc
Basically he arranged for another Poo test but got sent the wrong one but my doctor picked this up straight away and I got the FIT test along with a blood test.
All this happened just before Christmas so had to wait over the holiday period for the results and to be honest Cancer had not even entered my mind but I knew there was something wrong.
New Year and the test came back positive and the bloods looked OK but the Iron looked on the low side ( my wife picked that up - ex nurse as I didn't have clue).
Next thing another phone call with the Doctor he asked me has anything changed - No.
Referral for colonoscopy Jan 23rd - Went in early on the 20th for a Covid swab.
Day of the colonoscopy ( I am still thinking it is some kind of IBD).
Got told it look like a malignant tumour in the rectum !
My wife and I were utterly shocked and it was all kind of surreal.
Told I would be put on the 2 week process and that is when the Journey started.
On the Monday contacted by the MDT team
Dates for CT scans / MRI's - The Weds and the Saturday of that week.
Biopsy results - which brought it home
Met my surgeon and the colorectal nurses the following week with the treatment plant.
The week after that my Oncologist.
Not long after that I was booked in for 5 Days of radiotherapy at Addenbrookes in
Cambridge.
The treatment plan is looking at Shrinking the tumour with Radiotherapy and then surgery followed by a temporary stoma which will be reversed - fingers crossed.

The real irony is that for several years I lived in Australia and I left aged 49 and they start bowel screening at 50 ! ( One for Alanis Morrissette ) - should have moved to Scotland !

Radiotherapy completed 10/3/21

So it’s been a while since I have been logged in and since the last time life has been a whirlwind.
I was fortunate enough to work from home but due to issues with personnel at work seem to be consuming my life but during this period I got the dates for my surgery which then enabled me to give an end date to get work sorted and focus back on me.

So following the radiotherapy I had a couple of weeks with side effects but when these died down I felt like a different person probably the best I had felt in the last 18 months so I took the opportunity to get out on the bike more and get myself really fit knowing that I had upcoming surgery at some stage.
Then after a few weeks I was contacted by the MDT team to say I would be getting appointments for follow up CT scan / MRI and these duly turned up
19th April CT
25th April MRI
The ironic thing is that the weekend before the scan I got a second letter with the hospital pre-admission and the dates for the surgery which was May 4th !!
I have to say when I got the surgery date it really hit me as it now felt very real and very close🙁
The MDT spoke to me that week to basically say due to Covid-19 surgery dates were all over the place so my slot was booked the scary thing was they left this message via voicemail and said that something had come to their attention and could I ring them and as they had gone home I had to wait until the next day so panic and no sleep that night !!
Called the next day and all it turned out to be is that I needed to go in again before the surgery date to see the consultant and go through the procedure again - phew 😅
By all accounts the radiotherapy had done a good job in shrinking the tumour and I was able to ask more questions that I had forgotten to ask last time.
So count down to May the 4th I.e the dreaded pico lax which didn’t seem to work but then took off like a rocket booster !!
May 4th surgery day at hospital 6.30am got all booked in got gowned up and ready to go after several nervous pees
Into surgery chatting to the surgeon and talking about bikes next thing I know is that I’m in recovery a bit delirious trying to get up because I need a pee ( they must have thought we have got a right one here ) anyway back in the ward by 1.00pm and having a cuppa 2pm.
Recovery in hospital going well catheter out the next day / started my stoma training
The following days started changing my own bag and self injections of blood thinner.
The only problem was the drain kept draining which delayed me getting home along with a couple of temperature spikes.
In the end got sent home 10th May with my meds and a portable drain.
Top tips for anyone going into hospital that kept me sane:
Something to read
If you are into technology use it!
iPhone great for FaceTime/ Spotify/radio (take some headphones)the music also helped me sleep as the ward will be busy.
FaceTime was brilliant as I could talk with my wife and family at anytime and with restrictions on visiting it was amazing.
I was lucky in that I had an old iPad which I could get Netflix on so I downloaded movies to watch and I basically gave myself two slots a day to watch a film one around 2.00 pm and another around 7.30 as this helped with relieving time and boredom.
I soon as I could get into PJs it made me feel a bit more human
Also I tried to get mobile and as independent as soon as I could.
So now at home and feel so happy to be here
Stoma well mentally pretty hard but the alternative is worse and it’s early days yet and my guts need to settle more.
Sorry a bit of a ramble but if anyone reads it I hope it helps
Now that I’m home I will log in most days 👍😊Paul
So after being home 36 hrs my stoma decided to go on strike and therefore ended up in AE plus a couple of bonus nights in hospital that I hadn’t bargained for !!
After being all night on a drip due to dehydration I started to feel better however my bloods picked up I had an infection so I had to stop that extra night and started on a course of antibiotics.
Wednesday 19th got my final diagnosis post surgery basically in a nutshell I was diagnosed stage 3 as I had one lymph node that had a cancer in it but other than that the whole disease had been cut away and is gone . So next phase is a bunch of mop up chemo after the surgery has settled down.
You first think crap wish all the lymph nodes were free but on reflection you know deep down this is what you expected and it could have been a whole lot worse.
So the Journey goes on and my reversal on my stoma gets kicked down the road a bit.
But I am lucky I have got a fabulous wife who supports me and an amazing daughter who is full of positivity.
So next step oncologist appointment
So following conversations on the bowel cancer uk website with people far more knowledgeable than me on the subject I was able to see the oncologist and ask the relevant questions.
The good news is whilst stage 3 I was emvi negative so basically 3 months of mop up chemo which sounds easy peasy but it isn’t and having just about coming to the end of my first cycle I really feel for those who have to go through 6 months of it or longer.
Main side effects was tiredness and diarrhoea.
I think respond medical thought I was selling stoma bags at the local market!
Whilst I was in the Macmillan centre there was some brilliant people there all going through various treatments and everyone was smiling and happy and it therefore made my first infusion a less anxious process. 16th of July my first cycle ends 🥳!!
Bring on cycle 2 - 23rd of July.
Right here we are cycle 2 as before pin and needles after the infusion as per normal nurses in the Macmillan centre brilliant felt sorry for some of the other patients as clearly struggling but they are there and brave and going through the treatment I love their resilience and determination 💪
Will work harder on counteracting the diarrhoea as if the bag leaks it’s like being acid etched 😣🙁
So bit of while for an update but more of a coping strategy than anything else.
So post cycle 2 which was a struggle and still had in the back of my mind halfway through 2 that I am struggling with this and I have got 2 more to go !
After the treatment my feet start to fall apart with blisters - Hand and Foot syndrome so a course of steroid cream and an extra week off treatment and it was in fact a blessing in disguise because it was gap that I needed before cycle 3.
This also gave me the time to get out on my bike which is good for the soul and my sanity especially as the weather was ( is ) good.
So started cycle 3 and just dealt with in the knowledge I have only got one more after it and again pushed myself out on to the bike just for mental first aid which helped.
So now started cycle 4 same old same old again - feeling sick / tired / hate the smell of the stoma bag when changing but 7 days to go and then that's it - no more...…!
Looking forward to holiday at the end of October then potentially back at work 1/11/21.
Funny how this has turned into a blog almost rather than info just about me personally.
I look at the people who are going through multiple chemo cycles and I have nothing but admiration for them. Out of all the processes Chemo is undoubtedly the worst even surgery was easier to bear.
Next update post chemo and hopefully maybe some dates on reversal surgery.
So two weeks post chemo treatment and the 1st week felt elated to be finished second week the PN came back but hopefully will go soon and getthe odd bout of tiredness which I guess is to be expected. Oncologist appointment on the 18th and then back to the colorectal team and hopefully a date for reversal. Got to be honest I would even go in over Christmas if I had to. It’s been a journey so far but hopefully only one more major stage to go.
After getting back from a short break I got a couple of letters with a date for a suture line enema to check out the surgery and a date with the surgeon after this with what I am assuming is part of the reversal process.
So on the 15th of November I had a suture line enema to check out the surgery and it was confirmed by the radiologists it is part of the reversal process and my date with the surgeon is on the 25th of November so it looks like I am progressing to the stoma reversal :).