Stage 3 bowel cancer diagnosis a story of 4weeks

it’s been a bit of whirlwind 4 weeks from beng diagnosed with iron deficiency to stage 3 bowel cancer just wanted somewhere to write it all down

so about a month back I was at my usual diabetic appointment where I was told I have  reversed my type 2 diabetes from 96 to 41 in about 9 months and within 3 months they are hoping to stop medication. Great a thought I had became more active lost a bunch of weight and began to eat properly 

but there was a small problem my iron deficiency had gotten worse, I was going to toilet all the time it seemed and I had a pain in my side so my new doctor decided to refer me for a colonoscopy as a ‘just incase’ 

So after I short wait I got my appointment and was told to drink litres of laxatives and that’s the point it seemed to go down hill

i did the bowel prep and nothing was coming out then all the sudden I got massive pain in my in my side almost like I was blocked and began being sick nothing coming out my backside that night was miserable the day next was my colonoscopy and I was in a state When I got to the hospital I told them what had happened and they decided to proceed very quickly they had found the blockage and began taking biopsy’s the. Was told they couldn’t go any further as they couldn’t get the camera past and was sent home

a day or so later I started to get a massive pain again in my side began being sick so decided to go to a walk in centre where at that point I get a call from the hospital saying that I should go there if I was getting pains at which point I called a friend and went to a and e after a wait of 3 hours I was quickly put on to a bed where they wanted to do a x ray and ct scan of my lower half of my body

i have the scans and after being told I was going up to the ward for the night as about to be wheeled up a surgeon and his team comes up to me and tell me that I need a emergency op on my bowel and It would be happening within 30 mins I signed the consent form and was told I would being having a stoma which I do t think at the time I fully understood what that would mean

after a couple of hoursI was out in recovery looking horrified at this clear bag over what was part of my bowel outside when I was out of recovery on a ward a few doctors came around and informed me that it looked like I had stage 3 bowel cancer and a few more tests needed to be done mri and upper body chest ct scan at least they have came back clear 

I am only 33 and all the doctors seem generally surprised about my diagnosis next Friday I will be getting a clear of what’s next for me hoping to hear more about treatmeant

sorry about the long post poor grammar and spelling just want somewhere to write this all day and share with other people 

  • Hello Rudface and welcome.  You have been through a terrible time and I was so sorry as I read one awful situation after another.  You must be totally confused, shocked and upset.  I cannot believe you were kept waiting for 3 hours in Accident and Emergency after being told to make your way there and in your situation.  I am sorry you were shocked to find yourself with a stoma and understand you were in no state to understand what was going on; but really there was no alternative from what you have written.  At only 33 years of age you have had a horrible time culminating in discovering that you have Stage 3 bowel cancer.  I hope you have family and friends to give support as you go through this.  Looked at objectively (ie from where I am situated) it is good that they found the cancer when they did and hopefully they will be able to take action to keep it under control.  Do keep us informed of your progress if you would like to keep doing this.  You have obviously had a hard time but people here are always happy to talk with others who are going through a tough time.  Annie

  • Hi Rudface

    im sorry you have found yourself here, you have had a terrible ordeal, it’s always a shock to have the diagnosis but topped with emergency surgery and a stoma must be so hard to process. 

    Myself I have stomach cancer and it was a huge shock to be diagnosed as a fit 46 year old woman with mild indigestion and bloating. I’m currently awaiting an op after pre surgery chemo. 

    I don’t have too much knowledge of bowel cancer except my mother in law was diagnosed stage 3 7 years ago now and made a full recovery, I hope you have the same outcome. 

    When I was first diagnosed I looked online for help, I found the Macmillan forums very good to speak to others experiencing the same as me. I also found a good place to start was listening to the you me and the big c podcasts on bbc radio app, there is a young woman with stage 4 bowel cancer called Deborah James (aka bowelbabe on Instagram and Twitter) as one of the presenters , I found the podcasts to be very helpful and positive. Might not be you cup of tea but thought it worth a mention.

    its a difficult journey,  I hope you have support around you, just remember it’s ok to have bad days but there will still be many good days, some days I’m able to forget what is going on, I’ve learnt to live in the moment.

    sending you positive, healing thoughts

    louise x

     

  • Hello!

     

    I’m so sorry about your diagnosis... I feel your pain - I was diagnosed with stage 2 bowel cancer in July this yea at the age of 32... it was complete shock for everyone. 

    I was thinking my life is going to end very soon and that I will be leaving my 4 yrs old boy to grow uo without mummy :( 

    I have completed my chemo just 2 weeks ago and now awaiting for blood tests and after that more scans colonoscopy etc.

    i feel fear all the time that during waiting time for the chemo - I had surgery after which I had to wait few weeks to start on drugs- and 3 months on chemo something has grown on my lever or lungs...

    But even I’m scared as hell I’m trying to stay as much positive as I possibly can :) 

    I wish you all the best and remember you are not alone and we are here to support you :) 

    Mal

  • Hello again thank you for the kind replys

    all things considered I think I am doing ok have sisters and a brother helping out the last few days

    my emotions have been up and down in a short period of time last night I was having a bit of a tough time with not sleeping and worrying 

    finaly got out today to the shops the stoma has been the course of a lot of my problems as it’s still pretty large and do have a noticeable bulge where it is, the support belt has helped a little but still can’t help thinking people are looking at me

    the cancer diagnosis has been a strange one, I have a large family/extended family with not one case so I am the first, from what I have read online it’s uncommon for somebody my age 

    will have a look at the podcasts never even thought about that

  • hello againall ive been trying to write up a follow up post for a while now but everytime i have done it my phone has messed up and lost the post so finaly doing it on a laptop

     

    So i had my cancer removed in december 2018 it went mostly ok but i have a leak in the bowel so had to go home with a drain for 2 weeks

    i then got a PICC line inserted then around the end of January 2019 i started 6 months of chemo (Folfox) i had a number of issues with the Picc line around 6 weeks in the chemo was going in very slowly normally it would take 2 hours but then it would take6 to 7 hours this also meat the bottle i had to go with also went in slowly from 24 hours to somtimes more then 72 hours which was a pain

    around 3 months in  i started to have funny feeling in my hands and feet then gave me a month off to recover they also reduced the oxy by 30%

    i did feel tired  and sick for a few days aftertreatment but it was the cold feeling that realy got to me i was always feeling cold the slightest cold breeze was unbearable at times

    after my last chemo round i got an infection and had to spend 3 days in hospital and then also my hands and feet was numb all the times i was then diagnosed with grade 2 sensory neuropathy

    i was then advised i would be having scans every 6 months

    well last week i had my first ct scan and it wasent the best news they had been monitoring my lung nodules and they have grown slightly they have also found somthing on my liver which there are concerns about i have now been refered to a urgent PET CT scan in the next few days to say im craping myself would be a unerstatement  with having bowel cancer  there is a chance its secondary liver cancer at least the monitoring scan seem to work and its been found early

  • Hello,

            l am sorry to hear of your latest news,just when it seemed you had gone through the mill you really did not need to have the screw turned further, as you say at least they are on top of it for you.l have an understanding of what you are going through since your experience mimics my own,albeit six years ago and double your age.

                              l had 60%of my liver resected and this was not a real problem compared to the bowel.If l was faced with a choice between the two,l would take the liver every time. There were no complications or any lingering problem and certainly within the year l felt back to normal. The gallbladder was removed at the time and the regulation of bile was causing problems in my rear passage until l was prescribed colestrymine powder which bindsthe excess and prevents looseness and burning.One powder a day after my main evening meal sorts it out perfectly

                                                               My neuropathy was  as yours in hands and feet,very painful to walk,and the slightest breeze made them feel like blocks of ice.Thankfully my hands have returned to 99%normal but my feet remained challenged and l have to be concious of where they are,because l cannot feel l am about to trip.Funnily enough they are no no problem when l am on the go, only when l stop and lie down do l feel the pain and pins and needles.You will find your brain over a period of time will adjust and stop sending you constant messages about the pain.

      l am fully active and manage a flock of sheep and a herd of belted galloway cattle,have built my new house on our ctroft,all since my operation.l am also doing building erection work for others in my immediate area where l can work around the hours that suit me,l will still put in 14 hour days.

          l hope my experience is of help to you in showing the future may not be as bleak as you might be currently thinking.The only thing l do sympathise with you is that every day seems to drag,each week never ending,and a month is like an eternity,but time is a healer. Give yourself a goal and focus on getting there,stay positive and believe in yourself,you are blessed with deep inner strength, just look inside yourself , find it and do with it what you need too,

                                                                                                 my best wishes

  • Just wanted to say good luck with your scan, I hope it will be good news. I had a liver MRI last week after something was spotted during an ultrasound, I'd been having pain after my stomach cancer which also is know to show up in liver. however they say it is fatty deposits and nothing sinister. I pray you have the same outcome x

  • Hello Rudface,

    I'm so sorry to read of your dreadful experience and at your young age too, my heart goes out to you.

    My story is not wholly unlike yours in the fact that I, too, have stage 3 (going om stage 4) bowel cancer. I went out for a meal with a friend on November 23rd and within half an hour of eating, was terribly sick. I got home and couldn't get out of the bathroom, didn't know whether to sit on the loo or stick my head down it! With no improvement, on November 29th, I dialled 111 and the paramedics took me to the local hospital where I was put on a drip, given an anti-sickness shot and some anti-sickness pills, told I had gastro-enteritis and  to go home. Two weeks later, I was still vomiting up this horrible brown stuff but the other had gradually subsided. I called 111 several times, showed them what was coming up, told them I couldn't eat or drink, but each time I was told "Your numbers are good", and away they went. During this time, I was also contacting my GP's surgery but as I was  was out of area, I knew no-one would visit but I begged for help. Again. I was given more anti-sickness pills (3 more prescriptions which a friend was collecting for me). The sickness was continual. I had a holiday booked to go away with my son, daughter and my 2 grandsons who all live away, and we were due to go on December 14th. My daughter came to collect me but didn't want to take me as I was so ill but I insisted on going. I thought that as no-one else was helping me I would help myself and being with my grandchildren would buck me up. The journey was a nighmare for me and when we arrived I could only go to bed. The next night my daughter dialled 999 and the paramedics came out and I could have screamed when they said "Your numbers are good". However, they clearly saw something and took me to hospital where I had an x-ray followed by a CT scan which showed a large tumour and I had emergency surgery lasting 6 hours and a further 6 hours in recovery. I am now back home after 4 weeks in the first hospital and 10 days in another and today I have seen my oncologist to start the next battle. I'm almost 73 years old so am heading towards the end of my life but still have a lot of living left to do!!  I wish you all the very best of luck. Keep thinking positively - ONWARDS AND UPWARDS!! I'll be thinking of you.

  • hi all again thank you for the replys

    ill be having my pet ct scan tomorrow 

    cant beleave how fast its all moving my nurse only referred me yesterday