So with a fair bit of anxiety, I was back in to see Alice today after this recent break from chemo…..
The last 4 months have been such a welcome relief, with the chemo now completely out of my system and with all the side effects I had (in particular skin problems) all now fully cleared up. I can honestly say I physically feel fantastic!….I’ve been lucky enough to be able to push the running and cycling up a bit recently with around 200k on the bike a week and 20-30k on the treadmill so cannot complain at all. It really has been truly wonderful to have the time off to just enjoy summer with family and friends without that constant nagging thought in the back of my mind “is it an ‘off’ week or an ‘on’ week”. For the previous year that is the how Catherine and I had worked our diary trying to make sure that we only did stuff during the ‘off’ treatment weeks’ – it was something which we always managed ok, but I have to say, not having to plan like this since June has been a godsend 🙂
A couple of weeks back I had a CT scan which I was fully expecting to show that there has been significant enough progression that chemo would need to start again (albeit a different type of chemo). Well, the good news is that as it has turned out from my meeting with Alice today this isn’t actually the case…..yes, there is still a very small amount of growth in the mediastinum area and the nodes are slightly more inflamed (hence the rise in CEA in the bloods), however other than that it is very stable. There is no other spread anywhere else which is such a relief.
The other good news is that she also feels that radiotherapy (which had previously been off the table) is now something which is possible. This is mainly due to the fact that the time between when I last had sabre knife was so long ago (5-6 years ago), coupled with the fact that the lung was taken out 3.5 years ago means that it should be suitably recovered enough for another ‘hit’. This is positive news is that we can use this now, to give me a more extended break from chemo.
The final thing we talked about which I came away feeling the most positive about was to get me officially on the Marsden clinical trials list. Previously, this was something which Alice had said she would only do at the point she had exhausted all her options. However after I showed her an email which a good friend of mine sent me, she agreed that she would do it now. This amazing person who is the oncology lead for one of the big drug companies (and you know who you are, thank you so much x), contacted me a few weeks back and said that his team was working on some experimental drugs which target those with colorectal cancer. Anyway, they are just about to push this out to hospitals like the Marsden and Oxford for clinical trials. It maybe that this isn’t right for me, but at the same time it just might! Either way, the thing I am most pleased about is that it ‘gets me in the system’ and allows me to hopefully build a relationship with the Marsden so that I am on their watch list for anything in the future…..I can then safely say I have “all the bases covered”.
So for now, life is great, with radio and / or trials around the corner. With no chemo now confirmed until 2023, bring on Christmas!!😊
Fan bloody tastic news ! Live you you all 😘😘😘
Fantastic news Tom you are amazing
Really great news Tom. 👏🏻👏🏻👏🏻I’m so glad you are feeling well and loving life.
I have tears of joy running down my face reading this Tom. You are literally the bravest person I know and clearly you are on a massive high! What fantastic news, where you get your energy from – should be sold in bottles. Sending love from us all. Xx
Such a positive post. Great news 👏
Bloody brilliant news Tom! Xxx
Great news ! Great plan ! xxx
So pleased for you! Amazing news! Love to all , Gilly xx
That’s such good news Tom,
So lovely to read xxx
Great news Tom! Keep up the positivity. You’ve really inspired me and I will be thinking of you when I run the London marathon next week!
How lovely to read some happy and positive news. Couldn’t be more deserved. Enjoy the freedom and fun Tom and family. Xx
Amazing news, Tom. You are truly inspirational.
Good luck with the trials.
You are a bloody legend ! Honestly 👏🏻👏🏻👏🏻 I hope the family are well xxx
Fantastic news Tom 🙌
Great news Tom. Hope to see you all soon.
Brilliant news Tom! All bases covered, as you say, and every reason for your legendary optimism! Love from Caroline and family.
I’m so happy for you Tom that is awesome news. Fingers crossed with the new drug buddy 👍