Friday, 16 November 2012

After effects or Normality?

Its two weeks since the poison entered my body and I still feel as if I am suffering from the side effects, but not sickness or ulcer etc, although I have a pair of lips covered in cold sores.  My shoulders ache, my neck aches, my chest is heavy and hurts, my boobs - well I just don't want to go there. 
I am still tired, although I have been a little busy this week, popping into work, having a couple of meetings etc and going to healing.  A little bit of a cold is lingering in the background too.
I can't remember whether its normal to still feel this way, I hope it passes once the chemo stops because the thoughts of living with this additional painload isn't an exciting prospect.
I am on the edge of deciding to go back private for my chemotherapy, my works insurance covers me for this, but then I wanted to have an MDT team and going back to a private oncologist will lose this, although I'm not sure whether I have a team or not.  If I go private I can have the chemo at home, back up isn't there if something goes wrong as I would still need to go to hospital, but at the same time I have a nurse on the end of a telephone at all times. 
It is a tough decision, brought on only because of the cannula and the dreary room we have at Bishop Auckland.  I left a message with my NHS oncologists secretary to ask if I could receive the chemo privately but still see my NHS oncologist to ensure things were ok, she told me he is fighting to keep the NHS and doubts he would help.  I can understand this, I don't want to lose the NHS for anyone, in fact I think a lot more money should go in to it, but at the same time they should lose a lot of middle managers and top ones, bring back ERN's and have Auxiliaries do the duties they did before.  So much waste and the patient and working staff always lose out.
As we drove back from hubbys appointment last night it dawned on me that we had to fight for this 3rd line of chemo, he said radiotherapy would probably be out of the question due to cost etc and that trials would be the only thing open to me.  Well if I go down a trial route I don't see him as an oncologist, if this doesn't work he isn't going to offer anything else so why do I need him?  Questions that I have no idea who to get answers from.
My chemo is next week, so if I am to do something it will need to be arranged Monday or Tuesday, I don't want my chemo day changing as it hits well if I ulcerate, unless, of course, it is a Friday which gives me a guarantee that I won't be bad on a Saturday or Sunday.
Whichever route I go I know I will question it, but then not many oncologists really do want a mesothelioma patient on their books, we cost quite a bit and we can't guarantee we will stick around for a long time.

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