Yesterday was my urology/oncology appointment to review my recent CT scan with Dr. Frim. I was also hoping I might finally get prescribed some tablets to slow down or shrink my tumours.
The urology outpatients clinic was hot and stuffy and stuffed with hot and bothered patients in various stages of resignation and irritation – mostly the former. We’d come well equipped with distraction devices such as crosswords and Kindles, and needed them.
My appointment was for 3:35 and patient we were, but when at 5:30pm we saw Dr. Frim leaving with her coat on I went to the reception desk with a polite WTF. They tickled the computer and told me that actually my appointment was with Jaspal Phull. He was the surgeon who took my kidney out but who I have not seen before or since (apart from a post-operative swing-by), though I formed a very positive impression of him at the time.
Just before 6pm a nurse invited us to see him but parked us in another waiting area informing us that he was reading up the notes. After several minutes there he came to fetch us with many apologies for the delay, though when I said to him that if we had been waiting he was presumably having a bad day he said that his patient list had indeed been very heavy.
After some more discussion so he could get his head around my history we talked about the recent CT scan and us gave some very clear guidance there, saying “There are a few areas I don’t like the look of”. In my last blog post I said I had the impression that I had two different kinds of tumour now in my previously clear right lung. He said that was not the case; I do now have pleural deposits/tumours in the right lung – of the same kind as my left lung – but not two types. Nevertheless is it unusual for that to happen when the tumours in the left lung have now shrunk as hoped following the nephrectomy.
I also referred in the post to signs of “hanky panky” around an aorta which is apparently a potential tumour on a lymph node. It is possible that this is a bit of packing he would have placed in that area to absorb blood as they can look the same, but he said “Let’s assume it’s a lymph node”.
We had a discussion about the fluid on my right lung and he said “I’d drain that fluid for sure” and would get me booked in for that (it needs an overnight stay in case of adverse reactions). He said he’d like me fitter before I start tablets but that we should not delay their start.
I explained that Dr. Frim had said I would not have tablets until a further ten days after seeing her and I had the impression they were on a restricted list. He seemed puzzled by that and said he was going to refer me to another oncologist Mark Beresford, and would continue to monitor my case, concluding that “I’m not happy that you have not been seen. There are too many moving parts.” Actually too many parts are not moving in my view, but we got the impression he also thinks things are moving too slowly and wants to get some action.
When I commented that Dr. Frim had given me the impression that 5 years was a maximum longevity projection he also commented “I would not write yourself off too soon” and explained it just all depends how people react to the treatment. Better hold off the Bentley order then!
So it looks like I’ll be under Jaspal Phull now rather than Simon Evans. I’m happy with either as they are both lovely, bright and clearly on top of their game. I just wish the machine did not grind so slowly. And I hope the appointment with Mark Beresford comes through soon.
I think it may still be a while before I start the tablets as Mr. Phull said as we were leaving that he’d book me for another scan in 4 months time and “that gives us a 4 week lead in to initiate your treatment.” It is usual to do the scans every 3 months of treatment.
The next update will therefore probably be post-drainage or after I see Mark Beresford, whichever comes first.