Since CLL diagnosis I haven't wasted time wondering 'why, how, why me?' because I couldn't see the point and knew there were no answers. There's no familial link I'm aware of, I haven't been exposed to occupational toxins (again that I'm aware of) and I'm not even in a statistical high risk group in terms of age, ethnicity or gender. There could be a million and one reasons (or no reason at all), why a cell mutated and began spreading its errant ways round my blood system. That I accept because it's a done deal and I can't change that reality.
But I've begun to reflect on what my immune system, indeed what every person's immune system means to them as it quietly and secretly goes about it's business forming the very structure and foundation of our bodies. I'm not writing this as a clever medic or scientist, simply as a patient who is now trying to reacquaint myself with the core of me that before now, I rarely gave a thought to.
I like Chris's military analogy of the immune system because it's becoming clear to me that people simply do not understand what it means to have a compromised immune system. They understand totally and empathise if a friend,
family member, job or some kind of authority lets you down. They get that. They suggest ways of dealing with it, compensating for it or even seeking revenge.
But tell a non affected person that you have a compromised immune system and they just cannot internalise the implications. They can't see it, it's just there and it always works, doesn't it? Surely you're mistaken?
As I'm typing this I'm having an online conversation with one of the very few people I've told about my CLL. Prior to this she had no experience of blood cancer in any form. So the inevitable questions are, 'are there no tablets to help with this?' 'So you have to avoid germs and infections...how can you do that, surely you'll become paranoid?' And the biggie, the one that surely must drive every immune compromised person nuts, 'you can't live in a bubble, you've got to expose yourself to some risks to allow your system to adapt!'.
And I wondered how to answer those questions because it's unfair to expect the uninitiated to understand immune issues that had never entered their heads before. Well not in any great depth anyway. If they have a cold, it will go, if they have a fungal or bacterial infection, the secret defender will kick in and kick it out. It's a guardian angel never seen but always in action and for the most part do we ever think to consciously nurture it?
So now I use Chris's military analogy and I say, 'my immune system is like an Army with deserters. It's valiantly trying to fight invaders but each day more desert and are replaced with ineffective conscripts, all looking the part but utterly useless and not up to the job. So sending in new, unpredictable invaders won't strengthen my 'Army', it will probably result in overload on the good fighters left and cause collapse.'
And what I actually mean is, 'please don't tell me I'm being over cautious, over sensitive or obsessively careful.'
When I first read some of the precautions being advocated on this site, I must confess I thought some contributors were a bit kooky or had become too obsessive or introspective. Forgive me, I was new to all this. The Howard Hughes phenomenon. But I have the 'luxury' (not long term) of not being too immune compromised at the moment. And even that may be an illusion. How can I possibly know how badly my system is compromised? I know I'm getting fungal infections that once cleared overnight with treatment and now take weeks. I'm under no illusions but I'm struggling with the embarrassment I feel around self preservation.
I refused to shake hands with a sweaty palmed sales executive yesterday and he looked offended. How could he possibly understand? Would you advice as CLL'ers much further down the line be to forget about his feelings and protect myself? I know I need to toughen up on this but I find it hard. I know from talking to others that they do too at times. Because people don't always understand.
How could they understand? The immune system ALWAYS works doesn't it? It's inconceivable to most that the secret defender would ever let them down. And if they think I've developed into a DIVA protecting mine, so be it.
Just some thoughts for today that I wanted to share....maybe it resonates with others too?
Newdawn x
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Newdawn thank you for sharing your thoughts that do resonate. One of the hardest things following diagnosis I found was understanding how to define my own immune strengths and weaknesses and that took time. Of course this may be changing all the time. There is no doubt that caution and precaution are important. not easy when they contravene social etiquette and further isolate us.
Newdawn enlightening I myself have been struggling with this one. You have written it down so well I have decided to print it off and hand it to members of different groups I go to as I often feel I might be compromised in such situations. A couple of groups that I go to do know and we have come to an understanding that I will be contacted if they think I may be compromised in any way and that way I will decide to go or not. They are all very understanding and even asked if a mask is any good? would it be I just don't know any help on that one would be appreciated. Foolishly I was under the impression after my last treatment back in the summer of last year that my immune system would eventually recover as I did not even know even after having two further treatments prior to last years that this was a problem until I was told to be careful by the oncologist after the last lot of FCR Lite. Before going out either shopping or socialising in small groups I do have a nasal spray called First Defence which I use as not so long ago my husband had a really bad head cold so we tried it then and I thankfully I did not go down with it. Maybe I was lucky but I like to think it worked. It was recommended on one of the sites may have been this one. KEEP HEALTHY EVERYONE
As is so often the case with CLL, the degree to which our immune system is affected is highly individual; both before and after treatment, but there is the inescapable underlying downward trend in immune function. If your neutrophil and Ig factor levels remain healthy and you haven't noticed an increase in the number of infections and resulting complications or an increase in the time it takes you to get over infections, then, for the moment, you can continue to live your current lifestyle with equanimity.
Unfortunately, I suspect becoming obsessive/introspective about hygiene and the transmission of infections is a hard to escape downside of learning more about living with CLL. Conversely, it is easy to drop your guard after escaping infections for some time (because you've implemented effective precautions that become second nature) until you get a rude reawakening to your immune compromised status. The huge upside of being more aware of the simple techniques you can use to stay healthy, is a major improvement in your quality of life. You may also be able to defer the time to first treatment and given the associated risk of side effects affecting your quality of life post treatment, that can be a worthwhile bonus.
Regarding fungal infections, a few years back I had a couple that it took me a year or more before they resolved. Despite my immunity now being lower, I've had none since. Simple precautions like changing clothing styles and changing footwear more frequently, plus wearing open shoes/sandals have worked for me so far.
I too love Chris's military analogy - it describes how our immune system doesn't work so well!
A search for masks on this site will also turn up some other interesting discussions on the pros and cons of wearing them. Perhaps wearing masks reduces your risk of infection for same reason that eating garlic seems to improve your immune system - it keeps people away from you!
Hi I think that although we have a compromised immune system while we have some we should look for it. We surely owe it to the ones we love and who love us. Looking after yourself may mean advoiding people who are not only infectious but who also drain us emotionally. We need to advoid stress as much as colds. We need to eat healthly and regularly. We need to spend time for self preservation. Best wishes.
Thanks for all your kind and insightful comments to my blog, glad it resonated with some of you.
Quizzy, by all means use this explanation if it helps you in the groups you attend. I appreciate the difficulty in finding the words that will sink in without causing alarm or embarrassment. None of us want isolation to become a further price we pay for having this condition as Nick posts illustrates.
Thanks for your advice Neil and yes at the moment I'm holding my own and only a 'trainee infection control phobic' but I'm learning the necessary ropes for when it becomes more of a self preservation set of skills! Lol!
Yes Jan, you're right about nurturing and strengthening the immune system we have left and I'm very mindful of the damaging effects of emotional stress having been in a profession that was psychologically punishing. Thankfully selfishness doesn't come easy to me but I'm having to accept that I may not always be able to keep giving unconditionally if it impacts on my well-being. That's a tough balancing act for a carer with double responsibilities.
Hope you're all as well as it's possible to be today.
New Dawn - Your log reminded me of a post I saw somewhere about the issue of "the Peace" in church. It's something I never really thought about, as when I'm in church I'm in my little choir family, and I can be up front with them. Someone posted that the way they dealt with it was to take out a tissue just before "the Peace", hold it to their nose, and wave off the coming hug or handshake as if they were being considerate of the other person's health. It struck me as an easy way to avoid an embarrassing situation with strangers, without having to deal with explanations.
On the other hand, sometimes with people who are clearly sick and out in public, I have been known to be just plain blunt. A few weeks ago I went into my bank, a small, small town bank, to make a transaction that involved sitting down with a banker. He was finishing a conversation with someone else who was talking about how sick he was, then said something himself about the fact that he was getting over the flu. I got out my gel, told him I was immune compromised, backed my chair away from his desk without touching the arms, used my own pen, and asked that someone else handle any papers that I would need to sign. If I was rude, I don't care. Both he and the other gentleman were totally inconsiderate and I think we need to speak up and let people know how we feel about those who go around infecting others, immune compromised or not. One never knows when passing germs where they will end up - infecting a baby, someone elderly, someone immune compromised who cannot fight off whatever is going around. I have been known to tell people that they could kill someone and never even know it, but then I'm known as someone who speaks my mind when I feel strongly about something, and this is something I have felt strongly about all of my life, even before being immune compromised became an issue for me.
I admire your forthrightness - that's very hard to do. I wonder how these rude and inconsiderate people would feel if the tables were turned, or if they found out that they had been responsible for someone's death due to their lack of care.
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