In a bit of a mess this morning

I forgot my pain meds last night, which probably explains why I slept so badly and why this morning I have been struggling to get around the house.  I have become used to pain over the years and to a certain extent I ignore it, until it begins to affect my whole body.  The breast cancer spread to my bones and as a result I had to have a right total hip replacement because of a pathological fracture caused by a 4″ x 2″ metastatic tumour.  I have other mets in my bones, and the daily treatment of an Aromatase Inhibitor (endocrine therapy) causes my joints to be a bit stiff anyway, but it is when my head and face starts to ache in a particular way I know that I have forgotten something.  So I took my morning meds a while ago and I am letting my body soak them up so I can get moving properly.

By moving properly I do not mean that I can run, or even walk fast.  Starting to move after sitting is always a bit of a problem, though it has been better since I had my left hip replaced just before Christmas last year because I don’t have to use a stick around the house.  The reason for that operation was the fact that I was born with a deformed left hip which had never worked properly anyway, and then the family curse hit it in the form of osteoarthritis.  Then you combine that with the effects of cancer treatment and I ended up with bone on bone articulation and my left leg being shorter than my right.  Even then no one seemed to want to take it too seriously until I pushed to have something done about it.  So why was that I hear you ask?  Well I have metastatic breast cancer and that is considered incurable.  I have already outlived my initial prognosis and the ‘average’ time of survival for someone with MBC so I am on extra time on the borrowed time scale.  Would I make it to an extra period of time to make such an operation worthwhile?  Will I then get a penalty shoot-out to add on?  Could it go to a replay, or is it sudden death?

Living in the UK we have the National Health Service, which for those who saw the opening ceremony of the London 2012 Olympics does not mean that we spend our time bouncing up and down on beds in a sports arena; though personally I always take a teddy bear with me to hospital, but that is another matter entirely.  Hip replacement surgery is expensive but in the case of the left hip the source of the problem was not the cancer progressing.  On one level this is good news, but on another not so good.  Good, because the cancer was not advancing even though the cancer treatment wasn’t helping things.  Bad, because there is the consideration of how long I can be expected to live, and would that make the surgery viable?  The whole procedure didn’t cost me any extra than I pay in National Insurance contributions anyway, but this also means that having a procedure has to be justified because the NHS isn’t a for-profit organisation.  Doctors and nurses don’t get paid by how many procedures they do, patients they see, drugs they prescribe, or in the case of cancer treatments the doses they administer and the way it is administered.  But an invasive procedure like a total hip replacement has to be justified in terms of outcome, and also whether it is financially viable.  What would be the point in spending thousands on a hip replacement if I was going to die in a month or two?  This is not just from the financial point of view, but also that the physical stress of having a major operation may actually shorten a life, and because a hip replacement takes a while to recover from, is it a viable treatment in terms of Quality Of Life.

Quality Of Life becomes a major factor when you have an incurable illness.  Some people can’t understand why a patient refuses more chemotherapy which could extent their life by weeks … but there again they aren’t the person actually having the treatment pumped into them; they aren’t the ones who get the side effects.  Now let me think … would I prefer three weeks with my pain managed and feeling relatively well and comfortable and able to enjoy a few treats but without the chemo?  Or should I opt for five weeks when most of that time will be spend hanging on to the side of a toilet bowl being sick, and the rest of the time feeling very nauseous and maybe not having my pain managed as well because I am vomiting all the time so I can’t keep anything down?  It is NOT a case of giving up.  The patient knows that they are going to die and the decision has to be made as to how you go into that long goodnight.  Only the patient has the right to choose their way and it is wrong to put pressure on them to choose another option just so you can have them with you for a little longer.  If their family and friends do anything they should be giving them permission to go when they feel the time is right.

Eight years ago, almost to the day, a friend of mine died not long after I had told her that she should go when the time was right for her.  I would be there for her and I reminded her how many people loved her and that, despite what she may have believed, she had actually succeeded in everything in life that really mattered.  I had been with her for most of the last three months of her life and although by then she was in a coma in a Hospice, it should be her who dictated when she left and not the wishes of others.  I had taken along her favourite CDs and I played them almost constantly, and when she did go softly into the long goodnight she chose the time when her sisters had gone for a break and I was reading a story to her.  Perfect timing.  This is what all of us would want.

My illness is incurable but I am living with it, and quite well when I remember my pain meds!  Yes my mobility is not good in reality, and on a really good day I might have an extra half-speed that I can walk at, rather than dead slow with a possible stop just ahead, but I can still enjoy and appreciate life.  I do not want to be a burden or a duty.  When my time comes, and it does for all of us, just let me go at my own time, and in my own way.

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