I have to say that I am a little disappointed.
Despite having seen the new Consultant nearly two weeks ago, I am still waiting for the invite to the radiology department for the CT scan that we discussed.
With his somewhat “unsure” response to the report from last year, this uncertainty is starting to play on the mind, so, for the good news or bad, I would like the scan done and a new, more confident report prepared.
At least I will know where I stand now. As it is, I feel a little in limbo.
It’s almost as if I have presented as a completely new patient, but with a lot more knowledge and experience than a newly diagnosed person would be. As such, this knowledge isn’t completely helpful as I know what I might expect, if the news isn’t completely good. My eyes are perhaps wider open than they were four years ago, when everything was new.
Let’s hope they get back to me soon and I can put this uncertainty to bed.
Edit: As I was typing this entry, they were leaving a message on the answer machine at home. I now have an appointment booked for next Tuesday. So that’s all good.
The meeting with the new Consultant went very well. He’s very professional of course, but affable enough with it. I am sure we are going to get along just fine and I was “worrying” unnecessarily last week.
He took a full history from me and was grateful for the brief notes that I gave to him. We discussed the whys and wherefores of what treatment I have already had and he confirmed that the RCVP and maintenance are the “Gold Standard” of first line treatment for my NHL. Not that I had ever doubted that. So that’s good.
He had lots of notes from my previous hospital too, including the (brief) report on the CT scan that I had 12 months ago on completion of the maintenance. He was less than complimentary on the standard of the report and showed some of it to me. There were some paragraphs that just didn’t make any sense at all, explained by the fact that the report had been done on-line by someone in India. It is, of course, common to send work off-shore these days, but I am a little unhappy that my previous consultant didn’t similarly question the content.
I was told at the time that the report made no mention of any significant disease. I now learn that there was no sign of any residual mass within the abdomen. The new consultant finds this “a little odd”. This is potentially a worry…
He explained to me that it might not be bad news though. It could mean that there really is no disease left, which would constitute being cured. But NHL is not curable when it’s got to the Stage that I had at the beginning, at least that what I was told. He said that it would be extremely unusual if that were the case. Much more likely is that the person in India didn’t read the CT results properly…
So, he is going to do another CT scan so that he can confirm the position for himself, the worry being that the disease in the abdomen can progress without any external symptoms and cause problems for the kidneys or arteries and veins. If there is disease there, he may recommend some radiotherapy to deal with that, without further chemo at this stage.
I was also informed that the radiotherapy that I had four years ago to deal with the lymphodema in my right leg, was done to the wrong lymph node. It should have been done to disease in my abdomen, around my aorta and that would have most likely dealt with the leg issue.
The something in between
So, how do I feel about this?
I am pleased, of course, that the chemo and maintenance that I have enjoyed are the right thing to have done.
I am not pleased that I had unnecessary radiography to a part of my body that didn’t need it.
I am not pleased that the competency of the person employed by my local hospital has been so strongly questioned – questioning that should have been done at the time by my first consultant.
I am also pleased that my new man clearly knows what he is doing and wants to get things right on my behalf from now on.
Let’s hope that I might just be that one-in-million people who have been completely cured through the chemo. He might even write a paper about me…