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Its been a while since posting a blog. I went thro a stage of not wanting to think about doctors, hospitals and the C word anymore! Since August 09 we had a wonderful summer holiday. However it made me aware how I have slowed down and was unable to go out every day with my family to the parks due to exhaustion and shoulder pain. This stiffness has developed since a lump broke through in my left armpit and it is now very swollen. I cannot lift my arm above my head or behind and feel quite disabled...
My husband has been writing a blog since Camille's first diagnosis back in June. If you would like to read all his blogs back, please refer to www.burnserelli.com.
I will start to cut and paste his future blogs on here for reference.
Background information: My beautiful 2 year old daughter Camille was diagnosed with a large inoperable Grade II Ependymoma brain tumour, growing within her cerebellum, 4th ventricle and brain stem. She is undergoing a 12 month course of high dose 'baby brain'...
Since my last hospital visit, when they told me the chemo hadn't worked, I've been very down, and finding it hard to cope.
Things have come to a head now, and my fiance is moving out tonight.
He's more interested in smoking weed, and staying over at his friends house, than me.
We've been through all this before, talked about it etc, and nothing changes.
I need support. I need someone who will be there for me, not ignore me.
I understand he's finding me being ill hard, but he...
Well I a a clever girl. I have made it all the way into London and I must say it was worth the pain, I actually feel as if I have a purpose again instead of just being a blubbery mess.
Caught up on all the back log of emails and even managed to get ahead of myself to.
Everyone in the office was lovely when I walked in, lots of hugs and kisses and lots of "Oh we have missed you" (what they say when I am not there is anyones guess) and have been told by all that the area manager left a message that...
After a tough weekend with my daughter (advanced melanoma affecting her liver and bowel) being soooo sick we are off to meet the hospice doctor to get help with pain and sickness. I am worried it is the start of a slippery slope into not being treated and being told to tolerate it. She has another chemo booked but the sickness seems to be because of her liver being affected.
We had such high hopes of the PLX4032 announcements in the summer but although her genetic material has been away for testing...
is not here
it is here: http://suzeblogworld.blogspot.com/
feel free to bob over, I started it three years ago, so the early posts relate to my first round with bowel cancer and i document my radiation, surgery and chemo .. and my stoma reversal operation ..
Now I have secondaries and an new chapter unfolds!
Hubby is definately doing better on his respirator, almost ready to come off of it, we had thought it might be today but they say he is not able to yet. So frustrating, he is very alert and getting restless, stuck in bed all day at the hospital. He is still in intensive care and will be until they can get him breathing well enough on his own. So chemo is on hold until he is strong enough to handle it. It is pretty scary waiting and nothing happening. His family has been coming for a few daysor a...
My husband died on the 2nd of October and only 6 months from his diagnosis of Kidney cancer. It had already spread to his lungs on diagnosis then a couple of month ago discovered the disease in his brain. Even although I had some time to get my head around it all I still sit and think what has happened? I sometimes cant understand what I am feeling it is too great to deal with. We were together for 33 years married for 30. How can I deal with life without him? I havea terrific family and good friends...
I woke up this morning, thinking about the future, I am currenlty single with no partner or children. and i think we will lucky if mum makes it through to the new year.
I will have no parents to introduce to any future partner, no father to give me away at my wedding and no mother to ask for parent advice, no mother to hold my hand through labour or help me get dressed on my wedding day.
I know theses are selfish thoughts but what a sad future i hold. and yet so lucky compared to others.
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