I had my last treatment cycle in June 2024. I’m really relieved to have finished and looking forward to the next stage. I believe the next stage will comprise fewer trips to WGH (Western General Hospital), a return to more “normal” living and not having a medical calendar attached to my life. 
Sounds good to me!
I have been waiting for a nasal endoscopy to investigate congestion caused by the nivolumab since December 2022. It was at its worst in June 2023 with everyone asking if I have a cold or remarking that I always sounded as if I had one. When work colleagues aren’t aware what’s going on (my choice) these are uncomfortable conversations, too near to the crux. In retrospect, I note that the modi-1 trial (started June 22) improved my nasal congestion, but by such small amounts that I only realized a year later. I was surprised when the appointment eventually came through in May 2024 and it took 10 minutes for the ENT consultant to declare “nothing of concern going on”. I did get a stronger decongestant to try, but I don’t think it makes any difference.
My takeaway from all this is that neither ENT or Oncology really had a grip on what was going on. The side effects from immunotherapy are not well understood and medicine seems to take a standalone approach to each. Nasal congestion is sent to ENT, dry eyes to ophthalmology, dry mouth to dentistry. And these specialists may not be familiar with nivolumab. “What’s that, then?” they may ask.
All of my niggly immune side effects (dry mouth, dry eyes, nasal congestion) have eased after the modi-1. I think over time it will continue to improve. Whether it returns to normal, I’ve no idea.
I’m wrapping up the end of trial activities now. I’ve had a CT scan (kidney tumour is 23mm), final chat with my oncologist and a mop-up session with the trial admin today. The final sting in the tail was the trial asking if I could muster ANOTHER trip in next week for trial bloods. Noooooooooooooo! 
I did note that this appointment was the end-of-treatment and the would-be bell ringing occasion. There isn't a bell at WGH and neither do I feel the need for any "celebration".
I am now prepared for the red flags to watch out for as we enter this new stage. It’s exactly the same as before; fatigue, unexplained weight loss, blood in urine and any unexplained symptoms. I have had some of these symptoms before but never really appreciated how poorly I felt. Hopefully next time I’ll realise, and act on it.
One very interesting item to note is that there is something in my data which matches a trend that the trial was looking out for. I know nothing more than that and neither does my oncologist because the analysis is all confidential.
I have said before how indestructible I feel now. I’ve noticed that other life problems have become more important. I also don’t do many of the cancer-management behaviours I adopted. I don’t weigh myself regularly any more, and I’m not searching for the constant Macmillan online community support I was before. I feel cancer is taking a more backseat role in my life. This is all good. 
Finally my “other” oncologist popped in today to sign forms and a brief chat. We touched on the future, whether it would come back. "Prepare for a return, hope for the future" I said. He noted my good response to treatment and that if you stay issue free after the treatment for a period, that should be it, it won't return. I'm not sure I subscribe to this strategy. He thought I’d be good for another 30 years. Oh! 
Feet on the Floor, everyone.
Onwards!
