A line in the Sand

Last July, half way through my course of chemotherapy, at a follow-up consultation, my haematologist-oncologist viewed the results of my CAT scan and grimly declared that it wasn’t good news. The tumours had not shrunk enough and he wanted to change my regime from R-Bendamustine to CHOP.  I was devastated by this news.

R-Bendamustine is the standard first line of treatment for indolent (slow-growing) NHL (Non-Hodgkin Lymphoma). R stands for Rituximab and is an immunotherapy molecule,  hyped as the latest breakthrough in cancer treatments,  designed to work alongside the chemo.  My body did not like Rituximab and responded dramatically whenever the IV was increased from anything other than a snail’s pace.  As the Rituximab was the first to be administered it meant that on a couple of occasions the treatment was cancelled and I was sent home pumped up with anti-histamines and steroids.  I also had two hospital stays, one for an infection and one for surgery on my lung which meant further delays and a ton of antibiotics all within a few months.  I felt that the chemo regime had not been given a fair chance in the short period of time we were counting.

CHOP is a far more aggressive chemotherapy and is part of the R-CHOP regime normally given as a standard first line treatment for fast growing NHL tumours. The side effects are worse and it also guarantees hair loss, a side effect that troubles me enormously.

However, over the time that had passed since diagnosis, I had completed a lot of research around cancer and its treatments and had experienced many dark nights of the soul where I questioned myself, someone who I was starting to realise, I didn’t know as well as I thought. These were huge stakes at play here; what was important to me?  What transpired was I was not prepared to lose my hair in the gamble.  I felt then, and still do to a lesser extent, that I was being exceptionally shallow and a ridiculous coward but I kept returning to the same issue.  Everywhere I looked, women were coping with their hair loss. It looked to me like a badge of courage that I would not earn. Maybe if I was younger, maybe if it really would do the trick, maybe I would consent to this and worse but at that moment, when the consultant asked me to sign the consent form; I drew my line in the sand.  My wonderful husband and daughter were with me in the small room we were squeezed into along with the doctor, the nurses and a junior doctor.  I felt stuck between a rock and a hard place and under pressure to sign but I declined.  This was an exceptionally difficult action to take and I was immediately aware of the risks associated with my decision. You might like to imagine the consultant’s face.

You see, cancer just gets you in a tight grip around the neck, forces you against a hard  unforgiving brick wall and lifts you up off your feet and SHOUTS at you right into your face, loud and aggressively. Initially, the diagnosis of cancer is like the despot school bully, it taunts and scares without mercy, finding all your weak and vulnerable places not least of all the fact of your mortality and reduced lifespan.  No wonder the dominant metaphors in cancer narratives are war, fighting and survival; the bully needs to stand down and chemotherapy is the ammunition.  And when the medical establishment offers a treatment in this unknown and frightening terrain it feels like the cavalry have arrived and this is a fight that is going to be won.  However, as the medication I was enduring was failing to meet the surrogate marker of reduced tumour size, I started to feel less inclined to further any battles.  Instead I wanted a more humane approach which might offer quality time at the expense of quantity and which allowed me to face the world with the necessary confidence.

There’s no value in getting bogged down with all the details here except to say that it took considerable negotiation on my part to establish an agreed treatment plan for the next three months. The plan was that I would simply have three more rounds of Bendamustine on its own and then we’d look at how I fared after the treatment ended.  That was three months ago! Last Tuesday I had a CAT scan and yesterday I met with my  haematologist to discuss the outcome.

However, before I share the outcomes, I have done more than just accept three more rounds of Bendamustine. I have been slowly putting together a bespoke ‘Healing Plan’ for myself which incorporates: diet, wholefood, more vegetables and no refined sugar; gentle exercise, aka rebounder, yoga, walking and dance; dietary supplements e.g. hemp oil, curcumin, the Budwig protocol; and a developing philosophy of life that is aligned to a deeper connection to my own existence. When I first was diagnosed with cancer I bypassed so much of what I have now started to treasure.  At first I dismissed anything that was not standard medical procedure, labelling everything outside mainstream conventional thinking as ‘quackery’.  Now, I explore EVERYTHING and ANYONE!  It doesn’t mean I follow all or any of what I discover:  I like to think I’m discerning as to what to include in my plan.  And, although like everyone living with cancer, I hope for radical remission I am realistic enough to appreciate that much of my Healing Plan is designed to support my feeling of being in control and whether or not this is illusory doesn’t matter – I feel more optimistic and sense an increased vitality.

So yesterday, my beloved husband and daughter entered the consultant’s room with me; hoping for the best (obviously spontaneous remission) but prepared for the worst (tumours increased in size)… breath…

The tumours have reduced ‘a lot’.

Relief from scanxiety.

I have known from the outset that slow-growing NHL is incurable so what I seek is quality time in order to live as fully as possible (with my hair) for the remainder of my life. My life has started to become the greatest mystery to me and I feel very different now to the woman who was diagnosed at the end of last year.  I sense that my body requires more rest and restoration if it’s to cope with the threats of the renegade cells that continue to exist so my aim is to support as best I can all the trillions of healthy cells that together make ‘me’. A cancer survivor till I die.

As each day goes by I am confronted by people dying from cancer and the sadness sometimes overwhelms me, seeing beautiful lives cut short, knowing that every day it could be me. I am grateful, very grateful for the time I have been offered.

3 thoughts on “A line in the Sand

  1. Good morning. Thank you for writing. You have said you enjoy reading and make notes. You are prepared for writing your own book. I’m a cancer survivor. I had fourth stage bowel cancer in 2010. I’m clear of cancer and I am not on any long term drug treatment. You can find my book Staying Alive on Amazon, Well done for the courage to refuse the harsh treatments and look for alternative ways of healing. “Seek and you shall find”.

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  2. Hi, i know I’m late to this post.

    I went through CHOP-R and I can tell you it was a nightmare which took me a long time to recover from. Made me feel like a real coward.
    Sorry, but hair loss was the least of my concern, aside from it being from a male perspective, I lost most of my muscle tone and gained a lot of water weight.

    I agree with light exercise, walking yoga, whole foods, and fresh vegetables. I’m sure all that helped you immensely. it helped me quite a lot.

    Like

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