Always with me, when I’m not having treatment I get down periods. I don’t think it’s uncommon. You fight your way through treatment, you are left exhausted, with various niggly problems and you are scared about disease returning. I would just like to enjoy this time, but it seems my brain and other circumstances won’t let me.
A friend of mine (my daughter’s partner’s mum) who has lung cancer and secondary brain tumours, has been deteriorating after an amazing 3 years of treatment and stubborness. The death of others always makes us consider our own mortality. We have talked about it quite bluntly a few times. She has prepared everything practically now, and I think the illness and drugs are making her sleepy and forgetful about what is happening, so I hope she has a peaceful end.
I had another consultant’s appt. She reports on the levels from 2 months ago, because she decides at the consultation what blood tests need to be done. Bit annoying. But I think that she looks at the results as they come in, so anything abnormal would be dealt with. Basically my Ig immune levels were low end of normal, though she couldn’t locate my T cell level on our computer system – she’s from Leicester.
My light chains (measure of disease) were, disappointingly, a bit up from 8 to 21, but they can vary up and down, so they will just monitor them. Trouble is, it sits in your mind. My ratio of kappa to lambda (for those in the know) was, as always, way off. It is basically never normal as my lambda is always very low. Nobody can explain it, so we tend to just look at my kappa readings. I don’t worry about it, as it seems to have always been that way, even in remission.
For the second time recently I have a sore throat on the right side and am snuffly and tired. No temperature – could be hay fever. My last bout a month ago lasted about 5 days, so hoping this will be the same. It seems to come with a headachy feeling and a general stiffness around my neck.
I also have a sore mouth and lips – this is pretty constant, but I get irritable when I get mouth/tongue ulcers. I don’t know if it’s GVHD (graft versus host disease) causing this. What with that and the throat, eating is not enjoyable atm.
Lastly I had to take myself to eye casualty last week, as I suddenly got flashing in one eye and large floaters. After a long wait (they mislaid my paperwork and didn’t notice until I asked) I was told that due to age and short-sightedness the gel in my eye has ‘collapsed’ as they put it. Luckily there was no retinal detachment or tear, so I have to put up with some flashing (has lessened a bit) and one particularly annoying floater. Apparently you learn to live with it. I will keep an eye (!) on this as it is possible to suffer ocular GVHD, although I don’t think this is it.
This is a very grumbly blog. I would like to be heroic about it all, but it’s too much effort! I can hardly pull myself out of bed in the morning, so it’s good Bob is here atm to get me up. I have told him to be very strict with me (50 Shades of Green Tea) – he makes me move rooms to have my morning cuppa!
On the plus side I have done quite a lot of tidying and paperwork, and we have had a couple of trips out. I usually cheer up a bit then.
Hopefully when I next write I will be feeling better. I am working on it!