My life is being dismantled.
My immune system has collapsed and my life is following. So the time has come for me to let go. Again. Of everything. And I mean everything.
I spent the 12 month anniversary of my healing programme (12 August) in hospital being subjected to all types of tests and investigations to try to get to the bottom of my chronic diarrhoea, chronic herpes, chronic weight loss and chronic fatigue. I was spending most of my days sleeping.
They were worried I might be infectious since we already knew I’d had parasite, so I was put into isolation. Visitors were limited. And the journey began.
I had a CT (yay, no sign that the cancer had returned), numerous stool tests, and blood tests. I was put on IV fluids. The tests showed that I was on the border of being someone with severe immunodeficiency syndrome, and to make matters worse, I was positive for cryptosporidium. A usually benign parasite but where the patient is immunocompromised, it can be fatal. For information about crypto generally, go here and for the dangers for someone with a compromised immune system, go here.
The time in hospital is not one I want to repeat. Everything they gave me seemed to have a consequence. The antibiotics for the crypto interfered with my neurological functioning. I had tremors and couldn’t put sentences together. I thought there were gremlins in my head.
So how did this happen?
Without going into too much detail, it turns out that in very rare circumstances, the chemo (Bendamustine) I was given can disrupt the immune system so that lymphocytes don’t recover and reproduce in the way that they usually do. Go here if you want to understand it more. I still don’t have a lot of energy to explain. Look particularly at the entry on T-cells.
The worst thing about all this, is the incredibly low numbers of CD4+ cells that I have. If you looked at the entry on T-cells, that puts my blood profile on par with someone with HIV. Of course I don’t have the virus, but it means that I’m at chronic risk of infections and am perpetually fatigued. I’m not allowed to be around children at all because they are germ factories and my brother’s girlfriend is about to have a baby. Massive sad face.
The prognosis? Interesting to say the least. The doctors didn’t even know that the chemo could do this. They did some research while I was in hospital. I told them I had read something about the potential for a long term effect on the immune system. After I kept insisting I’d find it for them, they went and researched. They told me it was the Bendamustine that had brought this about.
Not only did they not know it could do this, but the statistics of it occurring are so low there are no statistics on recovery time. They don’t know when it will resolve or even if it will resolve.
So that brings me to now. I am severely immunocompromised. I’m at home (getting myself out of hospital was essential). I’m not really feeling any better. I still sleep most of the time. Folding a basket of washing requires an hour nap to recharge. I’m making sure I walk a little bit each day but that also sends me back to bed.
Where to now? I still have some doctors to see and second opinions to get. But I know what I need to do for myself.
I’m letting go of everything. I’m dismantling my life. I just don’t know when I’m going to be better. I’m confident I will recover, but it’s going to take everything I’ve got. Right now, I don’t have much.
I’ve left the Bar. The last books came home from chambers last week.
I’m deferring my course. I was so driven by that process that I was working on my new logo just days before I went to hospital. I’ve been watching all my classmates and friends setting up new businesses and looking so GOOD on social media, and I needed to keep up with them. So I didn’t focus on resting the way I should.
Not only am I deferring the course, but I’m telling myself that I may never work again. Letting go completely of that. And since most of my life has been defined by the work that I do, this is BIG! Really big.
And anything else that distracts me from the all important task of BEing (after all I had stopped BEing and shifted to DOing in the blink of an eyelid) is going. My focus needs to be the food I eat, the rest I get and nourishment I receive from meditation and my relationships. And I’m allowing people to come and help me, embracing social support. I just can’t do life on my own right now.
I’m leaving social media. Instagram – going. Twitter – going. And yes, Facebook, going. I’ll keep the blog. I might write from time to time. But I’m going to stop putting myself under deadlines. A recuperating body does NOT need pressure of any type. Obviously if I’m not on Facebook, you won’t know if I’ve posted anything. If you want to stay in touch with the blog, you will have to subscribe by email. Or just check in from time to time. There might be a surprise.
It’s time to say thank you so much to all of you for your support over the last 12 months. I’ve had a lot of fun making affirmations and finding interesting bits of information to share with you. And I’ve deeply appreciated all of your encouraging comments.
I’m going to Be. Essentially Be, just as I set out to do just over 12 months ago.
And my deepest wish for you all is that you be well and that you be happy. Just BE.
PS [2 March 2015]. If you are reading this now, you ought to know that I am doing much better. In fact I feel better than I have in a decade. You can read more about that here.