The rest of the month wasn't so bad. I went with Rufus to Art in Action just on the outskirts of Oxford. Art in action is sort of big festival of art from paintings, handicrafts to sculpture, mini performances to various courses and relaxing classical music concerts. It became our sort of our "annual tradition" to attend this. It usually lasts for 4 days and we d often try to go early.
The weather was so nice and sunny. I really enjoyed my time looking at exhibits and liked a few items displayed. Rufus was very understanding, attentive and caring with my so called "sciatica" pain needs. So we had a fantastic day but couldn't stay long because of my back and left leg pain.
This was me in July after art in action and before my parents came to visit for a day:
Even the very moment this pic was taken I was still in pain, but I continued smiling
So on Monday 22nd I ve seen my new private spinal consultant. I ve explained about my problems. He did quick examination. Checked my spine, tested my nerves and my limited movements and referred me for the whole spine MRI scan. He told me not to worry and everything will be fine.
2 days later I had my scan and I was booked to see him of Friday 26 July
His secretary called me on 26th and asked me to attend later in the evening appointment. Rufus offered to come with me as it was an evening after his work appointment.
We walked in and my consultant had this worried look on his face. I thought this must be the bad sign. So after introduction of my partner he said "Dani Im afraid its not a good news. You have a metastatic disease". The fear immediately set thru my body. I thought about my parents and how to tell them and started crying. Rufus wasn't clear on what metastatic disease was so I said "my cancer has spread".
Thru the tears I kept on saying why did my oncologist and gmp do nothing when I complained about my pain and than I asked how long have I got? Are we talking about the months or years?
He reassured me that many women live long with a cancer in their spine, he said 10, 15 years.
He also told me he had arranged for me to be admitted to the hospital straight away as I had some lessons on my liver as well and they needed to do further scans on me. Than he asked me if Id like to see my scans.
So those are my MRI scans of my Stage iv disease:
Notice how one vertebra L1 is a lot darker than the rest and picture on the right shows pathological fracture (top part of the vertebra - now almost V shaped) due to cancer / taken from a different angle
and than the one slightly above, T11 has a dark semicircle within it
Well thats the cancer in my spine
Than there is my liver ! Cancer has taken a hostage of about half of my liver:
Whitish big circles top left side are my cancerous lumps on the liver. There are 3 of them on there !
...and this was my MRI report:
Later I had an additional MRI to establish if there is a cancer on C1 / head. None was found there for now !
So this was now my body completely invaded by cancer that I didn't ask for !
I was angry as I put my trust in a medical profession and I was let down. I should have had a body scan at my initial diagnosis or at least the first time I mentioned localised lower back pain. I should never have been allowed that night on 15th June 2013 to leave hospital with a fracture in my back !
I was now STAGE IV CANCER GIRL and just a number to my (previous) oncology team !
Ive lost my trust in a medical team who "looked after me"
That evening Rufus took me to the hospital straight away. He seemed to be in state of shock and disbelief. I called my parents and told them that the news wasn't good and that my cancer had spread. My mum was in such a shock. Unable to talk. She passed my dad on who overheard everything on the phone and he could hardly say that they are not in a state to drive that evening. They were both lost and unable to say the words they needed to say .... than he said we will see you in the morning. I can only imagine how difficult that night was for them....
In my hospital bed when Rufus left I cried a lot, kept on thinking what if I die soon, what if I only have weeks to live? And I wanted to live so much. I ve not done all the things I wanted to do, Ive still not seen places I wanted to see, I was still young to die.
Through the tears I kept on saying to myself "I don't want to die, please don't let me die,
I don't want to die ....
Everything around me that evening looked so grim and dark and I hardly slept that night
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