Sometimes you have to tell it like it is.........

Okay, been  a while since I've done a really honest update on me....I've scratched the surface, ignored things over the summer and said 'Yes, I'm fine thanks' so now it's probably time for an honest update.

Over the past few months I've been waiting to 'improve' - before my surgery they said in three months I'd be back to fighting fit and wondering what all the fuss had been about :) If only.........

I'm now 10 months post surgery and my list of 'issues' seems to get longer each week/month.
Apart from the fact that the rectal wound still hasn't fully healed - and probably won't now - the ongoing ache in the original tumour area is a real question mark. I know they said 'inflammation in the area that could be due to treatment' but seriously, I'm 14 months post Radiotherapy now and 10 months post surgery why would there still be 'inflammation' there? Puzzles me for sure.

It's not a noticeable problem until I sit upright for long periods, like when I'm at work sitting in one position for a long time. It's a dull draining ache just around the tail-bone of my spine and previously I could ease it by walking around and stretching but now that's not so easy.
This is because the rib pain/back pain has increased and now walking, stretching, bending, sitting and (most of all) lying down, are all really painful - sigh........The shoulder issue is a nagging ache but as long as I move the arm slowly and do not overstretch it, it's not a huge problem as such - the back pain is more limiting now. Once I get into bed at night it's impossible to turn over without waking because the pain is intense - and getting mobile in the mornings is taking longer as each week passes. When I first get out of bed I'm like a 90 yr old woman shuffling around and struggling to do basic things, such as bend down to pick up the cat bowl so that he can be fed or going downstairs to let him out and each step on each stair sends jolts right through my whole spine - the only way I can describe it is like electric shocks going through the whole body as the foot takes the weight, the spine reacts....
So.......am going to try again tomorrow to get an appointment with my GP to see what can be sorted out.

Another thing that recently pissed me off was I told you all back in July that I'd been moved to 'closer monitoring' due to the currently 'too small to call lung spots'....because of them they moved my monitoring from 6 monthly moderate monitoring to 3 monthly close monitoring. Okay, that all 'sounds' good, yes?...

I was last seen mid June and scanned around the 3rd week of June so my next CT scan is booked for 3rd week in September - all good so far.........

My next consultation with them, to report the results of the scan and 'check me' was sent and is towards the end of October - Soooo, I get scanned then wait 6 weeks (!) for results on potentially serious issues with the lung - in fact, let's use proper English here rather than medical 'chat - potential serious issues with the lungs = possible tumours on a vein around the left lung area - ...

I wasn't particularly happy with the 6 week wait after the scan - but it gets worse, 2 weeks ago they then write and say my October appointment is now cancelled and my new appointment is end of November - so, I'm having a scan 19th September then (supposedly) waiting more than 2 months for the results and THIS is 'close monitoring' ? ...............I was due to be seen again in December anyway under moderate monitoring  (ie: no issues on scans, bloods all good, everything seems clear so see you in 6 months = moderate monitoring)
Being seen in the last week of November does not say 'close monitoring' to me....

So guess what this means? .........Yes, I have to become an official nuisance all over again, I have to email my nice colorectal nurses and insist that my scan results are reported to me via email rather than waiting for 2+ months, I have to feel and behave like a nuisance again to get any answers - as if things just aren't hard enough some days :(

I read a report on-line the other night (you know how I like to 'know' things - lol)....the report was about a study they've been doing with MRI tests pre-surgery on rectal cancer. To cut it short, the idea was to see if MRI could reliably predict outcome and life expectancy depending on the effect that Chemoradiation had on the original rectal tumour.
Seems that my 50/50 chance of surviving for 5+ years has now been slashed to around a 27% chance of survival.........LOL, serves me right for wanting to know too much, eh :) ....Anyway, all that means is there is now something else I need to prove them wrong on :)

On another note, I read a different report which stated that over 50% of rectal cancer patients die within a year of diagnosis....Up yours! I'm still here......16 months post diagnosis and counting :-)))

Catch up soon
xx