I Don't Believe it!

So after all the stress, the worry, the not knowing why I had to see the doctor so far ahead of my scheduled appointment I finally got the answer today.

Administrative cock up.

Someone (unknown apparently) cancelled my November appointment and re-scheduled for today. My IGM is holding steady but it is still on the high side. No alarms. No need to go immediately onto chemo.

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH!

Thank you NHS.

Worry

At my last appointment with my specialist I was told that my IGM levels were going up and that there was a possibility that I may have to have some more treatment in the Autumn. We scheduled another appointment for mid-September when we would discuss the results of the blood tests that were run that day.And then today...through the post I received a new appointment card (with my name and hospital number) on which someone had written the date and time of an appointmet next week; August 8th to be exact.

I am, to put it mildly, perplexed and not a little pissed off. No letter from the consultant explaining why there is a need to bring my appointment forward, no phone call from the secretary asking if this date (at such short notice) is convenient, (it isn't.) no common bloody courtesy whatsoever. Let's be blunt about this...it is not going to be good news. Doctors and hospitals do not move at such giddy speed for a routine cataract operation or to tell you that all is well and there is no need to worry. No. This can only mean that the blood results were not good and we need to get on with some treatment pdq. Christ on a bike, the cancer might have turned from the benign one I was diagnosed with into something altogether more malicious, (like multiple myeloma for example) my IGM might have spiked to levels where urgent action is required or they might simply want to recommend that we start the treatment we were discussing a little bit earlier. The point is I DON'T KNOW.

I touched on this area in an earlier post. The medical profession seems to me to be divorcing itself from one of the founding principles of the NHS, patient welfare. Communication with cancer patients is absolutely crucial as our lives are quite literally at stake. Yet we are told of our illness with clinical efficiency and sent appointments through the post without any explanation. The effect of this is to cause patients a degree of worry and stress that they could simply do without. Does no one actually think about what getting an unexpected appointment through the post could do to a patient's state of mind? The simple fact is that some basic priciples of patient care are being neglected.I shall go to my appointment (having taken a day off work) and for the first time ever I shall let the consultant know how I feel in no uncertain terms. It's not right to treat people like this.

Going Up!

I mentioned in an earlier post I think how we WM sufferers obssess about our IGM levels, and with good reason as they are a pretty reliable indicator of how the disease is progressing. My figures have been pretty good for two years now but the last couple of readings have shown a small but distinct upward trend. I had hoped that this might be a "blip" and that they would go down again but it seems that this is not to be.

I'm not quite sure what I think about this yet. I've pretty much managed to put all thoughts of disease and cancer to the back of my mind and get on with life again, and this hasn't been that difficult as I have been feeling very well. Now I face the prospect of another round of chemotherapy in the Autumn with all that that entails; time off work, long visits to hospital, needles (yuk), feeling like shit, losing my appetite, losing weight. Actually the last bit is no bad thing as I have packed on the pounds recently, unfortunately it is a rather drastic kind of diet. During the last round of chemo I remember my wife heading off to work with the words, "don't forget to eat" as I could easily go through the whole day without feeling the need or the desire to feed myself. Anyway, there's no getting away from the fact that I face the prospect of a fairly crappy few months, a prospect that I suspect I haven't fully come to terms with yet.

I think the technical, doctor-speak, explanation for what's happening to me is that I've "relapsed." I have several problems with this, not least of which is that it makes me sound like some young thug who has reneged on his asbo agreement. Relapse has the implication that the patient has somehow not been taking their medicine, or not looking after themselves properly and that this is why the disease has started to rear it's ugly head again. It's also a label that attaches itself to the long-term cancer patient and not the newly diagnosed, and so I have to re-adjust the way I view and describe myself. I am now one of the "old-lags," the old geezer in the cell down the wing who knows the ropes and can show the newbies the ropes. "Ah, Fludarbine is it? Oh yes I've had that, I've had 'em all mate. Have you tried that Rituximab yet? Oh and by the way, don't turn your back on Dr Smith if you know what I mean!"

The other thought that crosses my mind at this point is that I shall be given a different drug or set of drugs to the one I started on. There are only a certain number of drugs that are efficacious in WM and the list dwindles as you get through them. I've heard them called "silver bullets" and we don't have that many in the armoury. I've used up one and by the end of the year will probably use two more. There is a chance that some of these treatments can be used more than once, but when the disease starts to get resistant (or refractory in doctor-speak) to them you can cross them off the list for good. Let's hope that all those good people working in silver bullet factories around the world can come up with one that will actually slay the beast rather than just wound it!