I thought I would use a blog to be a bit more like a blog as I go through a journey that started in the summer of 2020 and resulted in a real challenge for 2021. I am at the beginning of the 2021 challenge and I thought this would be a really good way of keeping anyone who might be interested up to speed. I was going to call this living with Cancer but I am planning on living without Cancer and that's the plan so I will leave this post as 'Living with..." So for those that don't already know I was diagnosed with Bowel Cancer towards the end of December 2020, which means my battle really began in 2020 but for me the fight back began in 2021 and this is my story.
The background story
This is where the story began and the aim here is to try and keep updating this post with more information as time goes by.
In the summer of 2020, we were deep into the year that would become legendary because of Covid-19. Having been diagnosed with Diabetes the previous year but at this point I was not taking any medication for it but was having annual blood tests just to keep a closer eye on it. I had just had a blood test and I was in consultation with a nurse who was explaining the results to me. She was suggesting that as the results were pretty much the same as last year maybe we should attempt medication to see if this would improve things. It was at the end of this conversation that was almost in passing that she said that there appeared to be something strange with one of the results of my blood test and added that maybe I should organise an appointment with a GP to discuss this further.
'That' conversation with the GP
A week or two after the conversation with the nurse I have a telephone appointment with a GP. I remember the conversation and I have a weird sense of humour (in that I will laugh at anything). He asks me why I've called for an appointment and I say 'Well it was suggested by the nurse to speak to you about the blood test results'. Almost distracted he clearly turns to look at the PC as he pulls up my blood test results. It was like he was mumbling aloud to himself but with me at the other end of the line.
"Cholesterol, well that is a little raised but nothing to worry about. The diabetes side of things are pretty much the same, so nothing really for me there," then a very slight pause followed by
"Oh... My... God!!!"
Me being me, started to laugh and then say "that one not so good then?"
He then changes from reading to start asking questions about any history of various illnesses or diseases in the family. There was plenty but he didn't mention any that related to my family directly so he then asks.
"Have you had any pain recently?"
There was a pause as I was thinking – BINGO!! Unusually for me but 2 and 2 came together in my normally faltering memory and something burst into my head.
"Yes! I have had some pains in my stomach about 2 or 3 months ago."
Some more questions followed by an assumption that the pain maybe something like a stomach ulcer and this could be potentially very serious. If I have pains again go straight to A&E. Then asked what I did last time and I admitted that I took the drastic action of popping 2 Rennies and having an early night. He makes me promise that should it happen again that I will take my arse to A&E. He will also ask for an urgent Endoscopy from the local hospital.
A month or two later and the pain returned, and it was much worse than last time so on a Sunday morning I get my arse (and the rest of me) to A&E. They rig me up with an ECG and various other monitors. Before they suggest that this is a gastro problem and gave me Gaviscon and IBS medication and sent me home. Staying on the meds for a week the pain finally eased, and things started to return to normal. The summer was ending, and my emergency Endoscopy had not happened so after another day of pain I called the doctors to chase and spoke to a different GP who thought we might get some information from an Ultrasound if the Endoscopy still wasn't forthcoming.
The Tests!
Different hospital this time and I go for the Ultrasound on the 5th of November, a long story short - no problems found, and no babies spotted in there either - which was a relief! So, back to the GP and the hospital we go chasing here and then chasing there. Before we get a date for the Endoscopy, remember the expression 'Be careful what you wish for'. I go for the Endoscopy in late November. If you have ever been for an Endoscopy you will probably know what I am about to say, so skip this and start with the next paragraph. An Endoscopy is where they (the medical experts) feed a camera on the end of a metal tube into your body so they can see the inside of you! I was given the option of having anaesthetic or being completely with it. Again, me being me said I consent to it but let’s try and do this without, first but if my throat is not playing ball knock me out as I've waited long enough let’s get this done, today. Spray is put in your throat to numb it and they feed the metal tube past my tongue and into my stomach. I will say right now I can still close my eyes and feel that cold metal feeling on the side of my throat and in my chest and can almost feel it in my stomach. This is something I will never forget. Heaving, choking, and naturally holding your breath is controlled by the nurse making you focus and within minutes it was all done. I go to the recovery room and I was ready to jump off the bed and walk but they wheel you out! Whoops. There and then I am told there is nothing wrong. Yeah, all good I will get my coat, but before I am up, they also tell me they will refer me to another team for a colonoscopy to check for any problems there.
Early December I go for a Colonoscopy and again if you know what happens with this procedure then please feel free to skip this paragraph and catch up on the next one. Or even if you just don't want to know skip the paragraph (I won't blame you!). This process starts the day before where you need to be empty and I mean empty. You have a 24-hour process to go from full to empty. You get up and take a laxative, you then have set meals for the day before a second laxative followed by some other medication as a preparation. Trust me when I say I was empty. So, why do they need you empty I hear you not ask? Well, they are looking at your colon and the way this is done is by you being empty of food waste and then you are injected with blue radioactive dye, inflated with gas and then scanned. The next day I get driven to, yet another clinic and I get stripped off have a tube placed in the most unholiest of holes. It is plugged as you are literally pumped full of gas. You fill up and the dye apparently knows where to go and then you are scanned by this big scanner thing that looks like an MRI scanner but much quieter. It was in this clinic that I realised that something was wrong. As the information given and the explanation told to me was different to what happened. Not dramatically different but enough for me to know that something was wrong. The plan was you go through all the above then lay on your back get scanned, turn over get scanned again, matey boy tells you all is well and then you head back to the consultant. Well for me it was lay on my back get scanned. Come out, then get asked to lay on my side (!?!) get scanned. Return to my back and a much shorter scan and then it was all done and a
“Sorry I cannot read the results myself! for those you need to go back to the referring consultant.”
Which I translated as, we thought we saw something straight away got you to lay on your side to get a better look. We got that look and as a result you need to speak to a trained professional to get the bad news as I would not be able to tell you straight away as you will need to get this news with a plan already formed behind it.
Within a week I get a call from the Endoscopy consultant who tells me they 'found an abnormality' in the colonoscopy scan and I have been referred to a consultant who will be back in touch for an appointment soon. I was called to an appointment on the 18th of December 2020 a date that sticks with me. As it was a Friday and the last one before Christmas.
"The first time that 'word' was mentioned..”
I travelled to the hospital and for the first time my wife could come along with me to go and see what turned out to be a consultant surgeon. With the Covid-19 restriction this was a strange meeting from finding our way around the hospital to sitting in a corridor to be called. It was just strange, being in what looked like a ward’s corridor. Like a couple waiting for a bus, without a reception or bus stop or anything! I get called into an examination room where the Consultant Surgeon tells me that looking at the scans that I have Bowel Cancer and they have had a meeting of the teams earlier that morning and they have agreed with his suggested plan. Which is to operate and remove it. With my fatty liver they cannot be sure that this is OK, the x-ray on my lungs and heart were ok so we now need to organise an MRI scan for those other organs including the spleen. This will be to ensure that it hasn’t spread to those places yet. The issue with the blood was being Anaemic so will organise some iron infusions to bring this back up again. With my weight he was worried about the operation so will also send me for what I call a bike test but ultimately, it’s a test for lungs and heart, where they make you ride a bike to see what your heart and lung capacity is. If all that goes well then next on the agenda is the operation. His estimation would be for the middle or end of January. That is the plan and as Hannibal used to say, 'I love it when a plan comes together,'
The plan comes together
To kick everything off the first test just so happened to be a Covid-19 test, which I assume you have had at some point. It’s the one where they shove a giant cotton bud down your throat and as you are recovering from heaving, they shove the same stick up your nose for good measure. Doing this in the darkness of the corner of a multi-story car park, just makes it feel slightly sleazy like a drug deal in one of those American movies. I never got the call for the results for this! Next up was the MRI scan and having quite a few of these when I busted my ankle, I knew what to expect. When I say that I mean the noise and being fed into a tube-like toothpaste. What I didn’t expect was being tied to the bench by two nurses and not having any music played into my headset whilst being fed into the tube. Whilst waiting for the results for this one I get the call for my first infusion. ‘Hang on a minute, first? I thought there was only one of these?’ Apparently not there are two of these scheduled. Strange but true this was one of the only procedures I was looking forward to. As I was going to feel better afterwards. It may even help with the health kick that started in the new year in preparation for this operation. So back to the same hospital I skip looking forward to coming out feeling like Superman or Thor or someone not feeling weak and feeble. Well, this was the first time I felt the emotions growing as this felt very clinical. You have a drip feeding into your arm and you sit there for an hour whilst it goes in and an extra half hour for side effects on the first time. The chair was comfortable, I was supplied with coffee, tea and biscuits and it was all genuinely nice, but it felt clinical. There was BP equipment and things that go beep, a chair then the stand for the drip, then more BP equipment and beepy things then a chair and so on and so on. It was strange as I was looking forward to it and it made me worried for some reason. This happened and I got home fine.
Next was what I was really worried about, the bike test. My fitness levels had fallen off a cliff as it wasn’t that many years ago that I walked from London to Brighton in just under 25 hours. Since then and one more charity walk, I had let myself go to the dogs. Weight on, fitness gone and not really on the ball (so to speak) so this would be a make or break on the decision as it could mean the operation was off until the weight was off. So, I go for the test. First up is the lung capacity test which I struggled with as the tube made me open my mouth too much and I was heaving again. Memories of the Endoscopy again. That completed they rig up a battery powered ECG to check on my heart and then cover my mouth and nose with the same pipe. Meaning my breath will be monitored completely. Then I was told to ride on a bike and keep it at 60. I didn’t know what 60 was, mph, kmph or just a random number. It was to try and keep a set pace as the bike got gradually harder to peddle. So off we go, way too fast to begin with then trying to keep it at 60 was impossible I think I was 64 more than any other number ever. They said that when I cannot peddle any more to raise my hand and basically stop. I was impressed with myself that they stopped me rather than the other way around. They confirmed that both hearts and lungs were not an issue for a long operation, but fitness and weight loss would be greatly beneficial for this process. WALKING!! That is what I needed get back to the old walking training and that will see me right. The only issue with that is that the London to Brighton training took me about 9 months and I have 2 weeks. Next up was the final infusion a week before the confirmation of the operation date for the following week. The infusion was ok (more painful this time) and both hands stabbed but less emotional. I was there ready ok not much weight off, but I was ready. Let’s do this!!
The plan, oh yes! the plan, well about that...
Fully geared up and ready to go, I await a phone call from the surgeon to tell me the instructions. Firstly, take another Covid-19 test then isolate for two weeks then come in for an operation you should be in the hospital for 2 days or week or a month or whatever he tells me. Once this is completed you will need to do blah blah and follow this to the letter.
‘Yep! that is fine I will do whatever you tell me to, let’s get this sorted!’
Then that day when my mobile phone rings…
The conversation was a bit devastating at the time but in the grand scheme of things probably should have been expected and anticipated. It also had some good news in there as well, which I think I overlooked at the time. I hope you can understand the mindset of getting things sorted as soon as possible. I’ve quoted this many times in my blog already, but Covid-19 intervened in this story at this stage. We had all hoped that after Christmas we would be looking to come out of the lockdown situation but instead of that it went the other way and it stepped up. With more cases being confirmed and everything going in the wrong direction. The result was the same in many hospitals that had to gear up for taking many more Covid-19 patients and in some places over 50% of those in hospital had Covid-19. This meant that my operation was postponed without a new date to replace it. At the time I must admit I was gutted as I was geared up and ready to go in. No doubt, I would be scared to go but I still wanted it over and done with so I could start over. Instead, I was thrust back into limbo and I hold no grudges or blame as it is just one of those things. No one could have predicted this in the first place and 2020 has become one of those unprecedented years that happen once in a century and it just means that I have now been indirectly affected as well. One comment that rolls around my head was the risk to me if I come into hospital, have my operation, and then get Covid-19 whilst there would leave me in a desperate place. Whether that was to scare me into not chasing it certainly scared me off. Meaning my respect for the virus has increased and I am now desperate to avoid this virus either now or in the future. The two combined would mean a major problem for me so my life is on hold and now I am putting my thoughts together on here for you to read. The good news in the middle of those emotions is that the consultant told me that I didn’t have Covid-19 when I took that test. The infusions had gone well, the MRI confirmed that my other organs were clear also and the operation plus Chemotherapy should clear everything up. When I say ‘should’ it means the percentages quoted was positive. That covers the hospital side of things and next before the diary and updates side of thing to follow next is what I have been up to in the meantime...
Well my first reactions were..
OK, whilst going through all the hospital procedures and processes and being at home I have been busy. Unrelated to this whole situation we (me and the good lady wife) had just started organising our wills which still haven’t been signed off yet. Since then, I have organised and paid for my funeral which is seen as overly negative but here is my argument. I have sorted this out straight away and gives me peace of mind for my family. I did not want any crap to fall on my family should the worst happen. So, I’ve sorted this out and it is all done and dusted so now I can concentrate on getting ready for this challenge and making sure we do things the right way without having to worry about anything else. Added to that I have restarted my old training structure again and having weigh-ins as well. I have some challenges for myself. One is 30 and I am not sure where that one is currently sitting. The other was 1.21, and the other is to get 5 miles done at least every other day. I will try and do updates on those, but I won’t make any promises. OK that is all from the background and we now jump to the current update.
The Diary Begins (a bit late maybe)
Tuesday 9th February - Update
Ok update on the 1.20, this has been achieved so I can tick that one as done. The 30 challenge is now 24 from 30 which is positive. Walk wise today I walked for more than 7 miles and came home from the snow and crappy weather and I was already cold and wet so I dropped off some stuff including the boots and put on some trainers picked up the dog (not literally) and turned around to head back out again. Finishing the day on .3 short of 10 miles. Which appears to be the longest walking day for sometime. My legs are aching like no one's business since coming home. Hopefully means I will sleep tonight, as sleep appears to be the main thing affected by this whole situation. I seem to sit up finding excuses not to sleep. I'll watch movies write blogs and anything else. I think a lot about nothing and worry about lots of things that I cannot do very much about at the moment. Is this just a form of worry well quite possibly. Tonight I am to put that right. Whilst on that subject I will let you into a secret I tend to lay on my right now as the throb in my belly hurts slightly less there when sleeping that side. Anyway I have put something on Facebook about this walk as it was a really good day walking. I got some distance and didn't feel that tired at the end of it. Tomorrow may be another story and tonight the legs are feeling it already. Tomorrow I have a blood test about the diabetes - none of this other business, it is just to check to see if the medication has made any effect.
Wednesday 10th February - Update
This is not going to become a daily diary update alright! but I am going to update again today. This is because I did not have a good night. After the walk I may have got a chill or something but I now have a full blown cold. So because of the blocked nose I couldn't breathe when laying on my right so struggled that side. Laying on my left meant the tummy hurt so I don't think I got more than two hours sleep. It has left me tired all day and after the blood test today I headed into a supermarket to buy cold and flu meds and wandering in there I went so dizzy and light headed I thought I was going to get slapped in the face by the floor. It has happened a few times recently and the tummy has been gradually getting more painful. Should I be getting worried? That I don't know but there is nothing I can do at this time. I will dose myself up with medication and see if I can't catch up with some sleep tonight as I will be keen to get out for another walk tomorrow and get some more miles on the clock. Anyway as already mentioned this won't be a daily update but I aim to be back with another actual update as soon as possible. Current belly pain level is about a 6 out of 10.
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