Yes, it’s winter and like many other people, I have a cold! I don’t have influenza and I don’t have pneumonia, and in fact, I have one of the mildest colds I’ve ever had… so far at any rate.
This is a good sign. This means that despite being in recovery from a stem cell transplant, despite the fact that the chemotherapy may still be having an effect (I think it continues having an effect for several months after receiving the high dose) and despite taking Revlimid (an immunomodulatory drug, i.e. it adjusts the immune response), I have a fairly robust immune system. Hurray!
Having said that, in the last couple of days I have noticed a renewal of the breathlessness that I experienced in the early months of treatment and more-than-usual fatigue. I’m guessing that as a cold is an infection of the respiratory system, it affects breathing, so as I am slightly anaemic, my breathing and energy are more affected than someone with a full red blood count…?
I was in Day Case today getting my four-weekly Zometa infusion, so I mentioned the breathlessness and fatigue to Jenny, the nurse specialist, just in case. I asked if I should maybe have a blood test, but she didn’t think there was anything to worry about.
I am glad to report that I was not worried about it, nor about getting a cold. I wouldn’t have called especially, but I have been told to mention any unusual symptoms or side effects of treatment. Nonetheless, I still found it reassuring to be told there’s no need for a blood test. I’ll be back for a consultant appointment a week on Monday, so I’ll see what the blood results show then.
I continue to see the consultant and have a blood test every four weeks, prior to getting my prescription of Revlimid. Because of the effect on my immune system, they obviously need to monitor me. For a few months now, the blood results have been fine – more or less within the normal range. I know that am still slightly anaemic, which accounts for the daily fatigue I experience mid-afternoon or early evening. But I’m so blasé these days, I don’t even look at or take away the sheet of blood results the consultant offers me. If she says it all looks fine, then that’s ok with me.
However, I am aware that generally, I am more anxious than I ever was before being ill; not necessarily about health issues, although they are included, but all sorts of everything and anything that I could possibly think about or any decisions to be made.
It’s a state of mind which hits me hard in the middle of the night, when I frequently wake up, then struggle to get back to sleep as my mind relentlessly reels out its litany of worries and questions, which in the clear light of day never seem quite so huge or fearful. This is not a new phenomenon; I used to experience night-time fears even before I was ill. But now they come more often and I find it harder to shake them off.
The daytime anxiety is usually less frightening, more realistic, about quite simple day-to-day issues, but even so, it consumes both energy and time and still manages to whip me into mental circles of paralysing inactivity.
When I mentioned my anxiety to one of my Myeloma buddies, she said that she too is much more anxious than she used to be. Both of us used to be people who would be more inclined to think “oh, it’s fine – it’ll all be okay.” But now we are so easily assailed by doubts, uncertainties and minor fears which loom much larger than necessary…
She confessed that when she got a cold and eye infection last week, she went through a minor mental turmoil of questions about whether or not she should present herself to A&E, go to see her doctor, contact her consultant, was she going to develop pneumonia, etc. In the end, she spoke to a pharmacist, who gave her some antibiotic eye drops… and she regained her usual sense of perspective.
I was relieved to hear I was not alone with the anxiety issue. I suspect it is quite common after treatment for cancer, whether one that is deemed to be cured or only in remission. There is always the fear of if/when it will come back (separate from watching for any side effects from the ongoing maintenance treatment). I think that the mind doesn’t seem to be able to contain itself to just cancer fears, so does fearful/anxious with everything.
Oddly, the health concerns are actually easier to deal with – I can ask my consultant, the specialist nurses, or pose a question on the Myeloma UK website forum. Anyone would accept and even expect me to be anxious about a relapse. But in the meantime, while I’m encouraged to get on with it, make the most of life, some even say go back to normal (whatever that might be), I’m beleaguered by doubts and anxiety and a constant watchfulness for any unusual symptoms.
This is what I live with currently. Yes, finally, I have become a hypochondriac. Actually, that is not strictly true… I just checked a dictionary for the correct spelling and was met with this definition for hypochondria: ‘a state in which a person continuously worries about their health without having any reason to do so’. I take it back; I DO have very good reasons to be concerned about my health.