Saturday, March 3, 2012

Bits and Pieces

I've been "chatting" with CAX over on the Advanced Breast Cancer site.....CAX is living in Norway and is having difficulty getting anyone to look at her as a whole person.  She has doctors for her heart condition, she has doctors looking after her for the series of blood clots she had, and nerve damage.  She's frustrated because the doctors don't seem to talk to each other and share information.

Boy, do I know how that feels.  I find that you really have to fight for it, and sometimes you will alienate those who are supposedly looking after you.  I am particularly confused at times when something happens and I can't tell if it is a side effect or just something which has come my way....so I often opt to visit the my general practitioner rather than driving down to my oncologist who is farther away.

You really have to keep the whole person in focus in front of the doctor's eyes.  I think this is a major problem in today's medicine.  We aren't treating the person as a whole, we aren't having all the specialists working well together and the person who loses is the patient.  Annoying.

We have the same problem here as in Europe.  Go figure.

However, I did get a little charge out of visiting my GP on Friday for my back pain.  He used his reflect hammer to test the neural response on both of my knees....of course, nothing moved.  The nerves are very damaged.  I know that. I've been trying to tell people that...but when the doctor sees the extent of the damage himself....well, I get a little chuckle at seeing his eyebrows raise.

2 comments:

  1. Wow! Do you think the damage could be reversible? I had no reflex in my left leg after injuring my back carrying a suitcase upstairs - I was able to get it back with physical therapy. Any MRI should probably be done on your back - but that would mean going to another doctor! You are so right- lack of co-ordinated care is killing us!

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  2. No, I'm pretty sure it is the way it is going to be....it might improve a little, but I don't think so. This is as a result of the Abraxane, and is fairly common. I saw something about it today and it was really interesting...they actually acknowledge that this type of neuropathy often makes you not be able to tell where your feet are! YAY! I couldn't figure out how I could be so clumsy and trip over stuff so much although I thought it had to be the neuropathy....and I'm justified in feeling so!

    It might improve a bit. The same article I read advocated swimming and doing as much as possible to stimulate the muscles and that the nerves might follow. I look at it though with some skepticism given that my hands and feet had some previous damage from Taxol. This just took me over the edge neurologically.

    The oncologist is going to order the next scans as he sees fit. He won't be back in the office until Tuesday. It isn't as bad as it was on Sat. last, but it isn't good...and I over did it yesterday.

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