We all went to Birmingham for the day ... shop till you drop! It was great fun and we managed to all visit the shops, and even the lads managed the cloths shops!
Stopped for lunch and sat talking and laughing...mainly at Harriet's boyfriends, Davids job and my madness (oh and Andrews mad moments). But a good time had by all and not mention of the C word!
Monday, 22 February 2010
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.
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.
Monday, 8 February 2010
Second, third ...fourth opinion.
Leicester Hospital said palliative care, but Andrew and I wanted a second opinion (not wanting to give up a fight). So we asked The Royal Orthopedic for there opinion and they basically agreed with Leicester...once again it felt like a slap in the face, how could we tell the children this or indeed anyone else close to us as a family.
After a few days and some tears later, I decided to try and ask Prof Judson at the Royal Marsden for his opinion; thankfully my Oncologist supported me in this decision and it was only a matter of weeks before we were seeing the man himself in London. Now this man has an amazing brain...you can almost see the cogs going round as he contemplates the decision making process. But he never lets you feel uninformed and is very happy to answer questions, he did say that I was a complex case and that there was no clear right / wrong course of treatment to take. Eventually after some discussion it was decided that I should have Dox / Ifos combination chemo to try and double `zap` these gremlins. With the long term goal being to try and shrink both tumours in order to offer the best option of having surgery to move either / or both.
After a few days and some tears later, I decided to try and ask Prof Judson at the Royal Marsden for his opinion; thankfully my Oncologist supported me in this decision and it was only a matter of weeks before we were seeing the man himself in London. Now this man has an amazing brain...you can almost see the cogs going round as he contemplates the decision making process. But he never lets you feel uninformed and is very happy to answer questions, he did say that I was a complex case and that there was no clear right / wrong course of treatment to take. Eventually after some discussion it was decided that I should have Dox / Ifos combination chemo to try and double `zap` these gremlins. With the long term goal being to try and shrink both tumours in order to offer the best option of having surgery to move either / or both.
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