What’s been going on?

Well that is an interesting question and not one I’m sure I’ve fully processed yet. It seems like the last few weeks have consisted of waiting, various appointments with various teams, waiting, new hospitals, new ideas, waiting, new Dr’s and just a crazy whirlwind to get to the decision we are at for now with more waiting in the background.

This time consisted of a trip to Manchester for a second opinion, an up to date MRI scan and trials appointments which will be followed by further blogs, so for now what is happening…

Well, on Wednesday the return to bi-weekly chemo restarted, something I was not expecting and didn’t see on the cards… So yes chemo, a good thing I think, but back to the controlling life that a chemo regime and well any terminal/life long illness brings.

We are giving Irinotecan another chance, for anyone who remembers it was the very first chemotherapy I started on in March 2015 and roughly had 38 rounds between then and November 2016. So due to the length of time, other treatments I I have had and running out of options, we are going to see if my liver has become re-sensitive to it and it could maybe keep things stable at least while trials are explored.

How irinotecan works?

Irinotecan works by blocking an enzyme, called topoisomerase I. All cells need this enzyme to divide and grow. Irinotecan blocks this enzyme so the cancer cells can’t divide.


So back to biweekly chemo sessions and the lovely 5FU pump following me round for the few days after… One worry is the likelihood of hair loss, grown quite fond of this new style so we shall just wait and see.

How fluorouracil (5FU) works?

Fluorouracil is part of a group of chemotherapy drugs known as anti metabolites. Anti metabolites are similar to normal body molecules but they have a slightly different structure.

These differences mean that anti metabolites stop cancer cells working properly. They stop the cells making and repairing DNA. Cancer cells need to make and repair DNA so that they can grow and multiply.


So for now Lonsurf (tablet 💊 chemo) is on hold and staying in the back pocket for a later date potebtially. Always handy to have an extra card in the back pocket.

Safe to say this initial round (round 95 in total) gave my ass a kicking with sickness and terrible acid reflux, get back into the swing of things they say lol 😂.


  1. Jo Coupar · September 22

    You are truly amazing and an ambassador to all whose lives are touched by such cruel diseases.. Sending you loads of love and positive vibes. Jo

  2. Pauline · September 22

    We’ve never met Sam, I am a work friend of your dad’s, and I’ve been following your journey from the start. I’m really sorry you are feeling so rough today and am in awe of your ability to always find something positive to say, like “I won’t give up because most days I’m stronger than I am today”. I wish I could do something practical to help you but as I can’t I am sending you positive vibes, and strength to sustain you. You are a true inspiration. Very best wishes Pauline x

  3. Bernard williams · September 22

    Jeez. Elaine could have written that we have been on these drugs now for 5 years