Advanced bowel cancer

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I was diagnosed in Aug 21 with colorectal cancer, had chemoradiotherepy, surgery to remove 11cm tumour then 6 months of chemo to mop up anything..January 23 was given news there wasn’t any cancer to be seen. 
November 23 scan showed cancer on the peritoneum and in my chest..had another 4 sessions of chemo with the intention of an op on the peritoneum as chemo had shrunk it. I also just had a weeks worth of intense targeted radiotherapy on 3 nodes in my chest.  But the week before this I was feeling a bit out of sorts.  I thought my Speach was slurring and I couldn’t do intricate things with my fingers and thumb like put my earrings in.  Then by the 3rd radiotherapy I couldn’t undo or do up my bra. I had to go through a&e to get a ct on my head and found out it’s gone to my brain. Further mri with contrast shows 3 spots of cancer the biggest being 18mm on the right and 2 on the left. Also have a node in the groin with it as well.  Tomorrow I’m having a central venous line fitted in my chest and start new chemo Irinotcan + folfiri Saturday.  I’ve been the most positive though out my fight but this has knocked me for 6.  My appointment with my oncologist we were talking about setting up palliative care and dnr’s.  I worked though all my chemo this year working 2 manual jobs. I just cant believe I’ve been ravaged by this disease.  I’ve never felt sorry for myself but I know my days are numbered and now have to prepare my kids and hubby. I’m 58 and not ready 

  • Hi Let66

    I’m sorry to hear of what feels like devastating news. It sounds like you’re finding things tough right now. 

    I am in a similar position to you. Diagnosed stage 4 colon cancer in March 2023 with spread to lungs but with curative intent. Complications after a right hemicolectomy in March 2023 saw me back in hospital in April 2023 with a perforated gallbladder and sepsis. By the time I’d had further surgery the cancer had spread further in my lungs, into my peritoneum and onto the surface of my liver.

    No longer curable, chemo started. After 18 rounds of chemo I developed clots in my lung, and pneumonia and had another stay in hospital in January 2024. Restarted chemo then in April 2024 had seizures and they found a brain met. I had a craniotomy a couple of weeks ago and am now recovering before starting specialist radiotherapy to blast any last bits of the brain met. It will then be back to chemo to get the lungs under control again.

    I’m 49 and some days are tougher than others: I vowed at the start of this ‘journey’ to smile everyday and laugh no matter what and I’ve stuck to that. It sounds like you’ve been doing that too. 

    Il’m sure your team are looking after you. And you have more strength than you know,,, you got this!


  • Hi  

    Just wondering if you would be interested in phoning our helpline . 0808 808 0000.

    They can offer lots of support or suggest local support . Sometimes it helps to speak to someone in person .

    I can totally see why you feel depleted at this point .

    You have come through so much .

    Take care ,

    Court x 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • It is so hard to reply to you, as I am not in your position, but I did wonder at one time whether I was going to make it and thankfully I did, but when you do not know what the future holds it is awful.  You sound such a brave lady and have been through so much.  I have just started to work as a volunteer at my local Hospice, just helping patient choose their meals and making them tea etc. plus chatting and I must say what a lovely place it is.  I met with several people that have a limited life span and they appear to be trying to live life as normal as they can.  I do not think any of us are ready for that step into another life however old we are, but I am not an expert, but palliative care is the goal to prevent or treat the symptoms and side effects of the disease as early as possible, so hopefully you have a lot of time left.  Another thought, what about the spiritual side of things? perhaps talking to your local Church Minister would help.  I am sorry I am not much help to you, but my thoughts are with you.

  • Omg and I’m moaning. What a battle you’ve had.  You re an inspiration.  My port and chemo was cancelled last week but went ahead today, so the fight is back on. 

  • Thank you so much for your kind words of support. I think it’s the waiting for the chemo to start again to get the fight started again that’s made it hard as well.  Friday I had an episode where i lost complete control of my arm and my fingers and hand twisted in a different direction as if I was possessed. This was the swelling on my brain as I was told to decrease the steroids.  I’ve upped them now so hopefully that will stop. 
    I’ve lost my faith. I’ve lost 4 family members 3 to cancer in these last few years so my faith has long gone 

  • Thank you for your reply, so nice to hear from you, I do hope that things are not too bad and that you have started the chemotherapy.  Like we both said before, its the waiting that is the worse, once you get started you know something is being done.  I also hope that you have no more of those horrible episodes that you had, you must have felt dreadful.  I am also sorry you have lost your faith, I must admit that was something I clung onto when I was so poorly, but it is difficult when you have lost so many family members to cancer, you ask why?  Do hope that you are coping and getting the support you let us all know how you are doing. x