A coward dies a thousand deaths

As the name of my blog suggests I am a coward. It’s not something I’m proud of but I am not going to pretend to be something that I am not. I truly admire all the warriors out there who are fighting their battles with cancer, coping with the trauma of their disease and the treatments that have to be endured.  For me, it is all just too difficult, too challenging, and too painful.  I am not a gracious citizen of the kingdom of the sick.  I am bowed under by the weight of it all and struggle to exit the pity party that I inhabit for myself.  My time is, in the main, consumed by the effects of either my cancer or of the treatments. Each effect creates a mini death for me to endure.

Since my last blog everything seems to have taken a downhill turn. The surgery on my lung was excruciatingly painful.  The hospital stay lasted 11 days (3 days with two drains attached and 11 days with one drain).  Morphine, anti-sickness drugs and various other medications clouded my brain and the institutionalised nature of the hospital began to wear me down.  I received mixed messages about the success of the surgery, with a trial diet introduced only to be withdrawn suddenly after three days when I was sent home.  I know that the surgeons are hugely talented individuals and are masters of the scalpel, or in my case keyhole surgery, and for that I am grateful, but they can sometimes be somewhat dismissive of the human elements of what they do.  The surgical team were expert in thoracic surgery and were interested in my lung.  They are not very familiar with Non-Hodgkin Lymphoma and its complications.  This creates a rather fragmented approach.  OK, if things go to plan, not so OK if complications set in, like they did with me.  Equally some of the nurses and auxiliary staff were amazing, their competence, compassion and professionalism cocooning me in a comforting sense of care.  However, some staff were less interested in the patients and this created a nervous sense of unease.

But, that is in the past. I had some very tearful bouts whilst hospitalised and had many restless nights tossing and turning with images of dying in a hospital bed flooding my drug addled brain.  When I die I would prefer not to be in a hospital.  Is this possible?

The day before yesterday the stitches came out. Like the remnants of a fishing trip – black knotted, spiteful twine.  No embroidery or stitch technique with these surgeons.  I imagine the reason for their robustness was due to having to hold drains in place. The nurse who removed them said she had never experienced such knots.  Thankfully, she was patient and gentle. They were removed in time for my postponed chemotherapy which took place yesterday.  And, yesterday was an absolute disaster.  The Rituximab, after five hours caused the worst allergic reaction I have ever had.  Just when I thought it had been sorted by previous tweaks with steroids, anti-inflammatory stomach drugs and anti-histamine, it all went pear shaped again.  It was a gruelling experience and the doctors who were called after the second and more serious bout of hives stood waiting for the response to calm down.  It all happened in the chemo lounge where there is no privacy and where events like these create an unwitting centre of attention.  My face and torso was an absolute mess.  It calmed after about 20 minutes following the injection of more steroids and I was sent home after a couple more hours.  This chemotherapy session cancelled along with the one planned for today.  I now have to wait to be contacted.  I suspect I will be called in to see the consultant as I did not give consent for more aggressive chemotherapy.

This is now what consumes my thoughts. What do I want to do with regard to treatment?  Of course, I do not want to die but I am less afraid of dying than of being in pain and out of control. I’d like to have a shorter time span to spend in relative good health rather than a longer time span spent in hospitals or feeling like shit at home.  Already my appearance has changed drastically.  My face has become very drawn and my eyes have sunk.  I look like a cancer patient.  My hair has thinned and I lose quite a lot when I wash it but I am not bald.  My hair is very important to me; it always has been my crowning glory.  It is my last cowardly defence against this disease that wants to take so much from me.  It may sound vain but there it is.

I need to make a decision about my future treatment but my consultant only seems to want to offer more aggressive chemotherapy. What happens if I choose otherwise? Will I be abandoned?  What are my options? How long might I have?  What about end of life care? Who can a coward turn to?

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