Update on bowel cancer journey

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Hi everyone,

I’m posting again in hope that I can help alleviate a few people’s worries & to show that there is light at the end of the tunnel.

i was diagnosed immediately after my colonoscopy on 15th June 2022 colon cancer. after many appointments with nurses, consultants & surgeons, I finally had a lower anterior resection by keyhole on 13th July 2022.

A ccouple of weeks later I learned that it was a stage 3 tumour with 7 lymph nodes that were also cancerous. I then went to see my allocated oncologist who spoke to me about chemotherapy as a belt & braces to surgery. I decided to have my 1st capox infusion on Wednesday 24th August 2022. This caused me severe & rare side effects before my infusion was over. By the Friday I was attending my local A&E with more side effects where doctors spoke with my oncologist over the phone. 
I spent the whole weekend very ill & weighing up my options. 
within the week, I was back to see my oncologist to tell him that I was refusing any more chemotherapy. He wasn’t pleased but accepted my decision. We decided to do a watch & wait with monthly blood work. 

fast forward to November 2022, where my bloods showed a rise in CEA levels. Again, I had a CT & PET scan in January 2023. this showed that the cancer had spread to my liver (19mm tumour). Thankfully it was caught early. I awaited my appointment with the oncologist who suggested I try a different chemotherapy given through a pic line at home. I came home & discussed it with my partner & family who were pushing me to take it. 2 days later, I got a call from my oncologist to say that after speaking with my bowel surgeon & the liver surgeon that I was going straight for surgery instead. I had more keyhole surgery to remove the tumour on 15th March 2023 & came home on the 17th March. I spent 3 weeks recovering from surgery as my wounds were stapled this time round. since then I decided not to have any more chemotherapy & again do a watch n wait with 6 monthly scans.

i am now just over a year later with 2 clear scans under my belt (no evidence of disease) which I am over the moon about. This is amazing news but always in the back of my mind is the fact that I have a 65% chance of it reoccurring. 

What I’m trying to say is that, yes it is extremely worrying but the NHS staff are amazing & will do everything they can to help. If there is any questions or worries, your team are there to help. I will be 40 this June, I do still worry about my health but I try to live each day to the fullest. I have my medical team, partner & family at my side who are always fussing but finally accepted my decision on no chemotherapy. Whatever life may throw at me next I will deal with it. There is always the option of chemo if I have a reoccurrence along with more surgery, but for now my body is a temple & I’ve completely changed as a person. Keep the faith, trust your own instincts but always hear out your medical team & make a proper informed choice regarding your treatment.

  • hi  

    thank you for sharing, you are so right that an informed choice is key and whatever decision made given that is the right decision.

    May you and your family continue to do well, I certainly get the bit about "whatever life might choose to throw at me next" as they say yesterday is history, tomorrow a mystery today is a gift that is why we call it the present.

    <<hugs>>

    Steve  

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  • This is amazing  . I read it at the time but was out and meant to come back and say what an inspiration your post is .

    The good thing about robust scanning is they always have their eye on things .

    You are doing amazingly well with a great outlook .

    I wish you much happiness . 
    Court 

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    Helpline Number 0808 808 0000

  • Hi Steve,

    thank you. I’m enjoying life & building myself back up to some resemblance of fitness.

  • Hi court,

    thank you. I hope you, your mum & family are doing well. 
    im trying to build my fitness back up & one step further towards my dream career. Not letting anyone or anything stop me this time.

    take care

    Lee 

  • That’s brilliant news . You sound as though you have reached a good place .

    Enjoy the next chapter in your life .

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000