Doctors are good at giving explanations. I have been scratching my head over the cause of my symptoms, which are uncomfortable abdominal bloating and extreme tiredness, so that I fall asleep as soon as I sit down.
Here are some explanations:
1 It is all the result of the chemotherapy - someone told me that the side effects persist as long as the course of treatment - in my case 6 months. Someone else said it takes at least a year to get over them.
2 It is still the neuropathy caused by the oxaloplatin
3 It is the surgical effect of the anastamosis. a] it is the blind loop left by the surgery causing i)dumping syndrome; ii) excessive insulin secretion; iii) exaggerated gastro-colic secretion. b] it is sluggish flow because the narrow anastamosis. c] it is caused by bacterial overgrowth. d] it is caused by fungal overgrowth.
4 It is caused by a low potassium because I have been on steroids for so long.
5 It is steroid induced myopathy
6 It is because I am reducing the steroids
7 It is because I am anemic
8 It is all in the mind
9 I am depressed at the prospect of dying
10 I am depressed because I have retired and not found a new role
11 I have aged three years since I've had this disease and what I have are the symptoms of old age.
12 I have been fighting it long enough and I am ready to give up
13 I have a scan coming up and I am anxious
14 The cancer has come back.
You see an explanation is not the same as a reason. Without evidence an explanation is just speculation
3 comments:
I identify so much with this. I am still in "watch and wait" with CLL, so why am I so tired? I haven't had the major surgery and chemo that you've had, but many of your other suggestions for tiredness have come to my mind too. I long for explanations/reasons for it, with the hope that there will be something I can do about it.
But please don't give up - there are probably lots of people like me who read your blog every day with great interest (even if we don't understand all the technical medical stuff).
I agree Paula, please don't give up Terry, you do have a role and a very important one, transferring your knowledge to the net whenever you can.
There is something I am always reminded of when I read your medical blogs and that's the wonderful biology animations on the McGraw-Hill site:
http://highered.mcgraw-hill.com/sites/dl/free/0072437316/120060/ravenanimation.html.
these images have enabled me to understand so much better what's going on in the life of a cell. Although I realise the more technical aspects of your medical knowledge is being disseminated for the benefit of medical science, if there were a way for you to assist in animating some of these cellular mechanisms controlling apoptosis etc., it would be such a help to us lay persons.
You are in my thoughts constantly. Lately I've been visiting your blog almost daily sensing these thoughts might be crossing your mind, there being nothing more annoying than a constantly disturbed digestive system. And each day I eagerly await good news from you.
Skye
P.S. Your command of written english is wonderful, thank you for everything you write. I'm reading 'Superfreakonomics' at the moment, its all about 'incentive'.
Oh! dear Dr. Terry,
Your entry here is very enlightening to me and I cannot help smiling in self-recognition of one of my greater challenges in living with an indolent lymphoma. The desire to truly know and understand what is behind my strange and ever-present symptoms has been quite consuming for me and yet, as you say, without evidence, there is no firm grasp on what is going on. I keep telling myself that if I could just know, then I could accept and deal with it - it would afford some sense of control even if the symptoms cannot be alleviated. So, I am left to wonder,and to realize that even my own good doctors cannot give me reasons, and to be humbled that in spite of all that is known and understood, I am left with accepting the unknown and perhaps unknowable. In this way, I feel my illness has allowed me to experience vulnerability and smallness, as well as the greatness of being a part of the magnificence of Creation. I, as others, feel blessed by your sharing in this blog. You are always in my prayers. May you be well.
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