Chemo follow up

Following 5 sessions of chemo I had a CT scan to see whether the tumour were shrinking...no. So I had already made my mind up that I would not have the 6th session of chemo if this was the case and thankfully my Oncologist agreed. I just could not face chemo that was not benefiting me and it had seemed like a long time since life had been relatively normal (whatever that is??). Thankfully I had come through chemo relatively well... sore mouth, no hair (which had some benefits - no shaving and cheap on hair cuts!!), and of cause the nausea. The worst part though was the stay in hospital - as I was relatively well and put with patients who were often near the end of there options (to put it bluntly), this was upsetting. Also is brought home what I may be facing in the future with this damn cancer; yes I do get annoyed with `it`. When you are at home or work you can forget for a while about this `cancer`, but being in hospital makes you face the facts that you DO have sarcoma and this treatment is possible a palliative option. The stark reality is that you are living with cancer. God that hurts at times...what else can I say.

After my follow up at the Marsden in January - went to see Mr Rhys-Evans
(head and neck man), and was hoping for some positive plan
regarding treatment for temporal tumour - but he said NO to operating as I
have mets elsewhere and it would not prolong my overall
survival. Basically this is a major op and they are not willing to risk it -
unless my symptoms become worse i.e. loss/change in vision, more pain
etc. In my heart-of-hearts I was reluctant to go through this major surgery
and you might wonder why? - long term problems afterwards (risky),
putting myself through this only to face more and more surgery or treatment;
having to go to London and leave my kids to have this
surgery. But having that decision taken away from me - has shocked me.

Feeling sad that I am hurting my family by putting them through this (and
I know it is not my choice); worried about what effects the tumour will have
when / if it pushes or invades the brain area. I have been told that it is
highly possible. How long can I work /drive?

My eye area is a little puffy and I get pain and areas of lossed sensation -
which at present is manageable. I am trying to remain focused on day-to-day
living, but finding it really hard in going to work. How do I go to work and
pretend that everything is normal? People's expectations of chemo is that it
WILL kill the cancer and
you'll be ok. But like many others on this list we know that this is not
always the case and the other option is to be `living` with the cancer.
Everyone
wants a `cure` - but I know that this is not the case for me - just how do
you try and get that across to other people? I do not want there sympathy -
just a little understanding that I am trying to live with this - but
sometimes I will not find it easy.