“No Residual Disease”

This is the 200th post on this blog and I am very pleased that I am able to share some remarkable news.

On Wednesday, I contacted my new Consultant to ask him whether he had received the result of the CT scan from the previous week. He hadn’t, but he called me back about 10 minutes later.

“We can detect no residual disease in this scan. Have a good evening!”

No Residual Disease.

No Residual Disease.

I have taken a couple of days trying to get my head around what this might mean. As I posted at the beginning of the month after my first consultation with him, this “could mean that there really is no disease left, which would constitute being cured.”

No Residual Disease.

The dodgy report done in August 2012 said the same thing (once you’d read between the lines to understand what it actually said). Now, 12/13 months on, there is another, much more reliable report which says the same thing. Equally importantly perhaps, there has been no change in this condition in the last twelve months. NHL is a slow-growing, indolent disease that usually takes its time before causing you any problems. It can take years to show up, especially if it’s growing in the abdomen, where lots of other stuff is going on at the same time. Given that I have already been treated for it, and the usual prognosis, one might expect that any very small pockets of disease that evaded the chemo might have started to grow again by now. This is, after all, one of the reasons why my new man did the CT scan this month – just to check on the disease that cannot be felt manually, in the abdomen.

So, this is out-and-out good news. The best news that I could possibly have hoped for after this scan.

But…

I cannot count my chickens. If this really is true and there really is no further disease at all, then it is remarkable. NHL doesn’t work like that. I was told that it wasn’t curable with at the Stage that I presented with four years ago. It’s manageable. Treatable. But not curable.

On diagnosis, I  very quickly came to terms with the disease and what it meant for the rest of my life. I accepted the fact that I would need treatment over a long period; treatment that would make me sick and which would be unpleasant. I was OK with that and would have done as I was told when told to do something, even if it was to attend hospital and take some more medicine. Now, where does this leave me? This is not quite the same as being diagnosed with something like breast or bowel cancer. These organ / body-part specific cancers can, with some luck and good care, be properly cured and be gone for good. After 5 years (or whatever the period is), you can be pretty sure that it isn’t going to come back. NHL isn’t like that. It hangs around forever.

I now need to re-assess what this means in the medium to long term. IF it’s gone for good, then that’s brilliant and remarkable news. But a part of me, quite a large part of me if truth be told, doesn’t believe it.

The thing is, we will never know if it’s gone for good until I die (of something else).

I will make an appointment next week to see my man before Christmas and will discuss with him in person, what the implications of this report really are. And in the meantime, I will continue to try to live my life as if this was the last day of it.

Support

I have been thinking about the huge amount of support that I have received from all sorts of people since I started this blog. Family, friends, colleagues and complete strangers. People I have known all my life and people I have known for a very short time. People I don’t even know at all. I have said this before, but I am so grateful for all of this support from everyone who has given it. It makes a huge difference, seriously.

But as I walked the dog for a couple of hours this morning, I was thinking about how most people need support and help. It’s very easy to think that everyone else just gets along fine and doesn’t worry about things. It’s very easy to be selfish and self-interested. It’s easy to take that support for granted. And it’s also very bad indeed. I’m not sure that keeping a blog such as this isn’t part of the problem – it’s almost asking, begging, for support from people. And if that’s not selfish, I don’t know what is.

So, from now on, I vow to be a better person to my family, my friends, my colleagues and complete strangers. I am going to be better at reading the signs when someone needs some help, or encouragement, or support, or love. And I’m going to do something about it.

Because if I don’t, it will be too late.

The CT scan

As per the news from last week, I had the CT scan yesterday evening.

While sitting there, waiting, listening to the man next in line to me shout out in agony as the nurse put the cannula into the back of his hand (he’ll learn… ), it struck me that, fortunately, not many people reading this will have had the experience of having a CT, or PET, scan. So, I thought I would tell you what happens when you have an abdominal scan.

A CT (computerised tomography) scan is a special type of x-ray scan. Instead of taking a single x-ray, as you might have if you’ve broken an arm, the scanner takes lots of x-rays from lots of different angles and the resulting images are combined in the computer to create a 3D image of your insides.

On arrival at the hospital, after they have checked you in and taken your details etc, you are given a litre of a marker fluid to drink over a period of 45 minutes or an hour. This contains a chemical that allows your abdomen to be much more easily seen by the x-rays. It tastes of aniseed (a bit like Pernod, but without the fun) and you can add orange or lemon squash to it to partially mask the taste. I don’t bother. By the time that the hour has passed, the drink is well through your stomach and into your system. When the drink is nearly finished, they invite you through to the private waiting area and you change into a hospital gown, keeping only your underwear and shoes and socks on.

You sit, silently, with several other similarly attired people, all waiting for or having just had, the same experience. For some reason, no one seems to want to talk with each other.

Then, you are called into a side room, where the cannula is inserted into your vein. Yesterday, mine was into my inner elbow, but on previous occasions, it’s been into the back of my hand.

After a few more minutes waiting and the last of the drink to fill your stomach and oesophagus, you are called into the radiology suite. Lying down on the bed of the machine, the nurse tests the cannula, plugs you into the dye delivery system, then leaves the room to the control room next door. You are asked to raise your hands right over your head, in preparation for the scanning process. The bed moves into the large, circular ring that contains the x-ray cameras and beams. You can watch as it moves up to the same level as your face.

You hold still. The machine instructs you to take a deep breath, and hold it, while marker dye is put into the blood stream as the x-rays are given. Thoughts of lethal injections enter your mind, and are quickly dismissed. Many people, me included, can feel a warm flush as it goes round the body and a taste in the back of the mouth – not unpleasant, but odd. The scanning process (but not the dye) is repeated two or three times and takes about 5 minutes in total.

It’s not noisy, or painful and even when I have had a full body scan (which I didn’t yesterday), I didn’t find it claustrophobic.

On leaving the machine room, they ask you to wait 15 minutes, still in your hospital gown before they take out the cannula and allow you to go home. Via the gents…

And that’s it. You have just received at least a year’s worth of radiation in 5 minutes, and slightly increased your chances of developing a completely different cancer. But, without this kind of examination, diagnosis of many cancers would be impossible.

While not to be taken lightly, clearly, the benefits far outweigh the risks.

And now, back to waiting for the results…

At Wembley with Roger Waters and “The Wall”

Had a great evening at Wembley last night seeing Roger Waters’ “The Wall”. I saw this show at the MEN last year but seeing it again and the chance to visit the new Wembley for the first time was too tempting.

I was very impressed indeed with the whole Wembley experience. Easy to get to, from Beaconsfield, easy to get in. Lots of food and drink inside at not ludicrous prices. Plenty of loos. Easy to get out of and a very slick queuing system at the station, where the was a train waiting on the platform to take us back.

The concert was as good as last time, with slightly different projections in part, I thought. And a much wider Wall. The sound was fantastic, but I did really want to hear Dave Gilmour rather than the lead in this current band… Oh well…

All in all a good night out.

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But ‘Watching and waiting” no more

Nothing to worry about, but one thing that I forgot to mention when I updated recently on the meeting with the new Consultant was his view on ‘Watch and Wait’. This is a subject very close to my heart, as I have mentioned many times before. As I went through my history with him, I got to the end of the maintenance period and then said that I had gone back to ‘Watch and Wait’.

“Oh no, you are not on ‘Watch and Wait’ any longer.” he said, “You are now on ‘surveillance’ ”

It now seems that the waiting part only refers to the wait for your first symptoms and first treatment. Once you have had treatment, you are no longer waiting for it. As such, you are left with just the watching part, hence the new status of ‘surveillance’.

Semantics, I know. But, does it make any difference to the way that I feel about this current period in the process? No, not really. The waiting for something else to happen hasn’t suddenly disappeared; it is just no longer mentioned. Almost as if it’s being ignored, as if it’s unimportant. Which is a bit odd really, because that’s not how I feel about it.

Let’s see what happens after the CT scan. That might put things into a better perspective.

More waiting…

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 Good. The Bad. And the something in between

The 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.

The Bad
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…