Regular user

diagnosed with stage 3 cancer in august2018 ,had 5 weeks chemo radiotherapy ending mid nov 2018, luckily managed to get through the treatment with not much more than loose bowels, and fatigue in last week of treatment, even managed to do some cycling through last few weeks of treatment, three weeks after treatment starting to do more cycling and going back to work, ten weeks to wait for treatment to do its thing, and then mri and ct scans, now starting to get heavily in to my exercise routine to be as fit as possible in case of operation, as i have been told this aides recovery, also changed to a lot more healthy diet, including all the things that are meant to help fight cancer,scanned late jan 2019, results early feb, fantastic news complete clinical response, tumour has gone from size of a small lime to nothing, going for sigmoidoscopy on 18/ 2/19. to check the site for residual cells,praying for nothing to be found as i would opt for watch and wait, results came back clear, nurse said i have a meeting on 6/ 3/19 to decide options, i know in my mind what i want to do, but i will see what the meeting brings. 6/3/19 saw specialist today and MDT meeting said that they were more than happy for me to go on watch and wait, no brainer as far as i am concerned, will cross bridges when we get to them. I am now looking at options regarding papillon treatment, not sure yet whether this will be a good thing or not, will keep you posted as things unravel. 7/5/19.will be having scans done at the end of may, these scans will probably determine whether i will have the papillon treatment or not, mri and scope show no evidence of cancer, 28/ 5/ 19, had initial meeting with one of the papillon team, should know within a few weeks if i meet the criteria to have the extra treatment,after getting differing information from consultants, i have decided to hold back on the papillon treatment for the time being, it is still an option for the future if needed,9/9/19, the cancer has returned and it looks like no more options are available, so operation to come in a month or so, i will be having APR surgery on 16/10/19, to say i am scared would be an understatement,well surgery was carried out it didn't go exactly to plan, it started out keyhole but complications with heavy scarring from the radiotherapy meant he had to do a C-section to free things up and then everything is taken out of the back door, after an eight day stay in hospital which included my bowel going to sleep resulting in an NG line being put in to the stomach ( not pleasant at all), I came home,I am not going to lie the surgery must be brutal because when I came home I felt like I had been run over by a truck and trampled by a few elephants, today is third of November 2019, and I feel about fifty percent better, I am now trying to get some weight back on as I have lost seven kilo's since pre op weigh in,but my appetite is returning, 9/12/19,well what a difference a month or so makes, most of the weight has gone back on, doing regular four mile walks, strength and flexibility back to about 80% so really happy with how things are going, 15/3/20. I am now five months after operation and have been back at work for six weeks, being honest i would say that i am roughly back to about 90% of what i was prior to op, the only thing i would say is i have had to learn to do things a lot slower and to put a lot more thought in to how i lift things, still tired towards the end of the week and am grateful that i was given the chance to do a lighter job at work, as i would have struggled to do the physical heavy lifting that is a big part of my job in the road construction industry, i managed a thirty mile cycle ride last week , so the fitness is starting to come back, only time will tell whether i will ever get back to 100% of what i used to be, and that may well depend on whether the cancer returns again, will post again in a few months,14/4/20 it is now six months and two weeks since my operation, I had my MRI scan done ten days ago, consultant rang this morning and confirmed No Evidence of Disease so over the moon today, fitness levels are slightly better than last time I posted, so just going to carry on until next scan, 2/6/20 eight months since operation and fitness and strength still going in the right direction,enjoying my cycling and doing 35 miles now, and starting to think about taking early retirement,7/7/20 on the fifth of july 2020 myself and two guys from work did a sixty mile ride for Bowelcanceruk, this was from Manchester to Blackpool and on the day we were confronted with forty five mile an hour winds, we completed the ride in six and a half hours, so my fitness is close to being back to normal,I hope this helps people to realise that you can still have some form of a life even with cancer,2/9/20 still doing ok almost 11 months post op, I get an odd day of bloating with the stoma if I over indulge with food and beer more so if I forget to chew properly,I have resigned myself that I am probably never going to go back to exactly how I was, but if cancer does not show it's ugly head again I can more than cope with life as it is, 16/10/20 well decided to take early retirement, still feel pretty good and doing about 60 miles per week of cycling, just had an MRI scan and been told scan was clear,22/10/20/ saw the stoma nurse today and she said I have a small parastomal hernia, don't know how or when, she said they are so easy to get even sneezing can do it, CT scan shortly, will update when I know results of scan, 13/11/20 so scan results have shown a nodal area on my Bladder, MDT meeting compared MRI/CT scans they don't think it is anything suspicious but want me to have a PET scan to see for definite, since diagnosis this must be about my twelfth scan , PET scan done on 24/11/20.will update when I have news. 7 /12/20 disaster, multiple areas in my abdomen and bladder area, waiting to see Oncologist and awaiting referral to The Christie in view to hopefully different treatment options, spoke with Oncologist and three months of Capox will be needed before anything else is considered, and in the mean time perhaps The Christie will have considered what may be on the table, 7/ 1/ 21 Christie have said if disease shrinks they may well operate,and I have started CAPOX treatment for three months, 19/2/21 I am currently half way through my chemo and doing ok, with only a few symptoms up to now, 1/4/21 I have finished my four cycles of chemo and there have been a few dark days, I found that the infusions gave me the worst symptoms and some of them not very pleasant, the cape tablets have left a few symptoms but I am very slowly getting over them, waiting for meeting with Oncologist to plan the next steps cheers john. initial CT scan showed I have had a very good response to the Chemo, having a PET scan on 12/5/21 and colonoscopy on 21/5/21 to look at a thickening at the splenic flexture, so the colonoscopy was clear, and MDT have decided to have another MRI scan done on of pelvis and rectum, and also one of the liver, should know more by the end of June 2021, 5/7/21, Christie's have now requested another CT scan so more waiting hoping to make a decision on treatment options by end of July, have enjoyed last three months on the booze, so I have meeting on 3rd of August 21 down at the Christie which is followed by another PET scan , Which I hope will help to make the decision on which treatment options are going to be the best option for me not necessarily the best option for longevity, well had meeting at Christie's and still no nearer a decision yet, as they want to have a camera investigation to look at the inside of the bladder,and a ultrasound guided needle biopsy to check out an area in my right abdominal wall, when these test results are in they will then be able to give me a decision as to whether surgery is an option, so I have had a small bowel MRI scan mid August and had the ultrasound guided needle biopsy early September,so just the camera investigation up in to the bladder and should then find out the plan of action,cheers john. 9/9/21 so the guys at the Christie have got enough info off the small bowel MRI scan, and there is cancer in the dome of the bladder so meeting on 14/9/21 with surgeons to discuss the next plan of action, 14/9/21 so meeting at Christie's didn't go my way after they reviewed me again in MDT on 13/9/21 it was decided that surgery would not be an option, so it's back to chemo to try and get things back under control, if all is well with bloods I will be starting CAPOX again on 27/9/21, chemo underway and doing ok up to first week, bad reaction too second infusion should really have gone to A&E temp of 38.1, recovered by following day and started CAPE tablets the day after, we are not defined by what we go through,but by how we respond.