Tuesday 17 March 2015
The Medics Saga...reflections on diagnosis
The nerves are quite rattling me,
I'm getting quite unnerved,
A week away decision time,
I know its quite absurd....
"There can't be any changes,
The answers just the same.
So go away and live a life,
But do come back again".
"Its quite a simple question,
Like one & one make two.
We know all the combinations,
Just not how it applies to you."
"Our art is not a science,
We cannot read the runes.
We only know , you're doing fine,
Keep dancing to our tune."
"We can quote to you statistics,
Know factual stuff galore.
But when it comes to life & death,
Our knowledge is quite poor."
"We can't predict the future,
We don't have certain fact.
You are the unknown factor,
To keeping you intact."
"For all our seeming science,
And juggling of the data.
Our drugs will only treat in part,
Your will, will keep life later."
"So don't ask us all the questions,
Don't think we know the way.
That's in your own self power.
Each year, each month, each day."
"We have to save the patients.
We have to make them fit.
Us medics, limitations,
We only know a bit."
We conjure up our potions,
Repair, restore & heal.
The secret is not science.
Live life, live love...live real."
Friday 13 March 2015
Empathy overload...
Well its now some sixteen weeks, nearly four months, since my last chemotherapy. I thought all would be good by now; side effects subdued, stamina restored and some form of normality returned to life. What I have found is that the goal posts for normality have moved permanently,I can't simply rebuild & live at the same level. My normal and me are changed forever, not altogether bad, just different.
And if I feel this, so do others around me, people only have a certain level of empathetic giving, beyond which they tire & cant sustain. I understand this well;at f irst there is the shock & need to show sympathy & support then the concrete aid & visits, the gifts & cards;its all according to plan. Then comes the months of treatment the intermittent accompanying illnesses and the uncertain test results, it must all seem bewildering confusing. Is she well, is she cured , has she still got cancer, do I need to worry, what can I do now? So the messages & visits have reduced. No one assures me that I am in their prayers or thoughts, perhaps they think I've had my quota. The calls have lessened, it is I who must contact people & arrange meetings, down to me to make the calls or send the text. Its not a lack of care from others, its simply empathy overload & people have to get on with their lives, time moves by.
I was reminded of this today,remembering it was Friday again. Why Friday? Well since the beginning of the year, every Friday, a Saudi blogger called Raif Badawi, has been awaiting news as to whether or not he will receive part of the 1000 lashes punishment given because of his assertions on line about free speech in a Muslim country. Initially the worlds press were full of this atrocity, then, as time passed fewer countries voiced objection. Canada & France and even our very own Prince Charles stood up and demanded justice. But as time passes everyone's empathy weakens, Raif is not headline news. True Amnesty International tirelessly campaign for his release, his wife & family in Canada fight for a reprieve. , but the world turns on & this courageous young mans plight gets forgotten. Its just human nature, people can't keep fear that alive, cant be that in focus continuously, but for Raif, life in fear does not diminish with time.
Well, I am not in that terrible position & I am relatively well. But I still have the diagnosis 'incurable but treatable' & I struggle daily. From the lymphedema in my legs, as my body tries to cope with the after effects of removing so many lymph nodes and the neuropathy (nerve pain) as my body attempts to repair those longest nerves in my hands & feet. Its not the cancer that is ailing me its the effects of the cure; those four operations & six cycles of chemotherapy, in short Im suffering from the cure. Do I need to worry, well even I wont ask that question of the oncologist directly.
And will I be cured, am I in remission or cloud cuckoo land the questions & the answers are unknowable even for the medics. I sometimes feel like a fraud, attention seeking & malingering. I've endured the surgeons blade & struggled with the medics poison, Ive battled the nausea & fatigue so when do I get to say enough?
Seems like I never do. I must continue to take those small steps and hope those around me can see I am not returning to the person I was, that has changed forever, but am striving to be a different, stronger, focussed and carefree and more mindful individual. There are those precious few who have maintained & voiced the concern, held onto the need to support and, despite all that is happening in their lives, keep the contact. To them I give a gratitude beyond words; you keep me sane, make me laugh, lift my spirits and give me hope.
I've completed all the outer edges of the jigsaw, I have found all the key elements of the picture, I even have the big picture and its not so grey. But I now have to deal with all those green & blue pieces, the grass & the sky. So here's a big thank you to those few who have stayed the course, who sit with me still, through the hours of shaping the future & linking the pieces. You have my thanks, not for you empathy overload, but love.
And if I feel this, so do others around me, people only have a certain level of empathetic giving, beyond which they tire & cant sustain. I understand this well;at f irst there is the shock & need to show sympathy & support then the concrete aid & visits, the gifts & cards;its all according to plan. Then comes the months of treatment the intermittent accompanying illnesses and the uncertain test results, it must all seem bewildering confusing. Is she well, is she cured , has she still got cancer, do I need to worry, what can I do now? So the messages & visits have reduced. No one assures me that I am in their prayers or thoughts, perhaps they think I've had my quota. The calls have lessened, it is I who must contact people & arrange meetings, down to me to make the calls or send the text. Its not a lack of care from others, its simply empathy overload & people have to get on with their lives, time moves by.
I was reminded of this today,remembering it was Friday again. Why Friday? Well since the beginning of the year, every Friday, a Saudi blogger called Raif Badawi, has been awaiting news as to whether or not he will receive part of the 1000 lashes punishment given because of his assertions on line about free speech in a Muslim country. Initially the worlds press were full of this atrocity, then, as time passed fewer countries voiced objection. Canada & France and even our very own Prince Charles stood up and demanded justice. But as time passes everyone's empathy weakens, Raif is not headline news. True Amnesty International tirelessly campaign for his release, his wife & family in Canada fight for a reprieve. , but the world turns on & this courageous young mans plight gets forgotten. Its just human nature, people can't keep fear that alive, cant be that in focus continuously, but for Raif, life in fear does not diminish with time.
Well, I am not in that terrible position & I am relatively well. But I still have the diagnosis 'incurable but treatable' & I struggle daily. From the lymphedema in my legs, as my body tries to cope with the after effects of removing so many lymph nodes and the neuropathy (nerve pain) as my body attempts to repair those longest nerves in my hands & feet. Its not the cancer that is ailing me its the effects of the cure; those four operations & six cycles of chemotherapy, in short Im suffering from the cure. Do I need to worry, well even I wont ask that question of the oncologist directly.
And will I be cured, am I in remission or cloud cuckoo land the questions & the answers are unknowable even for the medics. I sometimes feel like a fraud, attention seeking & malingering. I've endured the surgeons blade & struggled with the medics poison, Ive battled the nausea & fatigue so when do I get to say enough?
Seems like I never do. I must continue to take those small steps and hope those around me can see I am not returning to the person I was, that has changed forever, but am striving to be a different, stronger, focussed and carefree and more mindful individual. There are those precious few who have maintained & voiced the concern, held onto the need to support and, despite all that is happening in their lives, keep the contact. To them I give a gratitude beyond words; you keep me sane, make me laugh, lift my spirits and give me hope.
I've completed all the outer edges of the jigsaw, I have found all the key elements of the picture, I even have the big picture and its not so grey. But I now have to deal with all those green & blue pieces, the grass & the sky. So here's a big thank you to those few who have stayed the course, who sit with me still, through the hours of shaping the future & linking the pieces. You have my thanks, not for you empathy overload, but love.
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