Being dismantled

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.

About Jane Treleaven

Jane Treleaven is a meditation teacher and health coach empowering people to be happy and well through just being, essentially being.

20 comments on “Being dismantled

  1. Pingback: Being on a fast: 5 days without solid food

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  3. Jane, you’ve been popping up in my thoughts the past couple of days so I’ve jumped on your blog. Reading this brought tears to my eyes. You’re amazing. Love to you x

  4. Hi Jane,
    We are thinking of you and sending every bit of positive energy we can your way. Hopefully the doggies are not off limits (although they are germ factories too!) – we find canine company so uncomplicated and genuine that it always makes us feel happy. We have a pot of Aloe Vera for you when we get back from OS. See you soon! Lots of love Sara & Tom xxxx

  5. Thank you Jane for yet another raw and vulnerable entry. You’re authenticity is pure inspiration and your strength spreads across the many miles now between us. I would like to share with you that I meditated and pulled the Angel of Healing card. Its says: “The angel of healing has felt your sadness and has shown up in your reading today to reflect healing light into your heart. Your angel wishes you to know that you are loved more than you can possibly imagine. Even though you may feel alone and unloved at times, know that you are eternally loved. Whether you know it or not, or feel it or not, you dearly loved and appreciated by many on the earth plane, as well as the angel realm.
    Close your eyes right now, place your hand upon your heart and feel the healing light pour through as you feel the presence of your angel. Feel yourself being breathed and supported by the universal life force of love, and imagine yourself glowing with light. Talk to you angel; ask anything you wish – share anything you wish. You may communicate through writing, or simply through thoughts and feelings. Doubt not that your angel exists for you will receive a positive sign or confirmation of some kind in the next few days which will help you to both trust and believe” .
    I continue to send you healing vibrations, love, light, strength and trust in knowing the power you hold. May you continue to bathe in this and know that many of us around the world will continue to follow and fight for you! XO

    • Hi Gabriella, thank you so much for this. I’m sorry I haven’t replied sooner but there has been a bit going on. Lots of love to you and Blake and all that love and light is being sent to you two. Exactly where in the world are you now? xxx

  6. Thank you once again Jane for the reminder to just be. While not in the same situation that you are right now, I also have felt the need to retreat back into myself and my life, my family and the love that is there. I too seem to have been swept away once more by the tsunami that is daily life these days. I see the promise that I made to myself 2 years ago post diagnosis (anniversary was 28th August) bobbing away in a distant ocean. The promise to be, to love, to laugh, to be grateful. I feel that the pressure (that I put on myself) to be on social media, my blog and IIN was completely contradicting the message I am trying to get across.
    You have made the right decision, but of course you don’t need my confirmation of that fact. I will miss you and your posts but I look forward to more writing when it comes here.
    I will do lots of loving kindness meditations for you (my commitment to myself also!).

    Sending peace, space, love an flight.

    Amy xxx

  7. Jane, you are doing all the right things for you right now & this is truly, one if the most courageous and I’m sure, the most difficult of decisions. I applaud you and send as much positive energy you way. I won’t even begin to comprehend what you must be going through but I do know, that whatever will come your way, you will give it all that you require, whole heartedly. I wish you nothing more than strength and peace. All the very best, Jane xo

  8. Jane, I read this yesterday and it touched me deeply The honesty, hope, awareness, determination and courage that you continue to show. It really is an inspiration. Thank you for posting such a vulnerable and open post, lots of love x

  9. Jane I am so sorry to hear this. What an amazing, inspirational and eloquent human being your are. Will be in touch soon. I will miss seeing you on FB and will email to go on your list. xo x0

  10. Hello Jane,

    Thank you for sharing and raising awareness. I want to acknowledge and show my appreciation for the energy you brought to our little IIN group. Please take care and keep us all updated.

Comments welcome