My last week meeting with Prof

Im in pain today, so much pain. I never knew your own body can hurt so much. My pain starts in the lower back / tail bone and goes down the legs. When it hurts i can feel every nerve in my legs. I can almost describe pathway of each one of those.

Last night I didn't get any sleep at all due to severe pain despite of medications Im on. 

I called my on call oncologist. Luckily it was one of the registrar I knew. I think he probably knows my medical history inside out by now. So on his advice Ive doubled up dose of pregabalin and morphine (the main 2 meds). I felt no better, probably worse but maybe it takes time to kick in. In the morning I could barely get out of the bed and when I did I realised I found it difficult to walk. 

My scans showed nothing that could cause pain. The main radiologist had a look at them really thoroughly and he couldn't see any nerve, disc compression. Could be my spinal degenerative disease ?. Something i might have inherited from my grandma.

Finally when I somehow managed to get to the living room I sat on my sofa and started vomiting. My mum said she never has seen anyone vomit so much. The bag was rather heavy.

It the afternoon pain eased off a little bit. I felt like a zombie all dosed off on morphine. Mum said I started hallucinating in  the afternoon. 

Pain is a little bit better now but its still hurting

So here is what happened so far 

After my last stay in the hospital i was discharged to go home. On Tuesday my good old friend Omar booked an appointment with my prof at his private clinic. I was ok to wait until 9th june when I have my appointment to discuss my options ( if I have any left at all) but my friend insisted I needed to see him sooner. 

So Omar who by the way is not feeling great himself these days, came down with his sister and we went to see prof. I was so dosed off on oramorph that I can hardly remember what happened at the appointment. Prof said I shouldn't loose hope and there are other tricks up his sleeve. So I might either go for clinical trial or further chemo possibly if my temperature stabilises. 

Omar's sister was really great in asking all the right questions and I was so happy she was there too. 

Before I came for my appointment for some reason I felt like crying so much. I think everything was getting on the top of me and I couldn't deal with it all. Constant hospital stays, not being able to do much because of pain etc etc. I felt and I still feel like a prisoner of my own body. I want to escape from this body but I can't Im trapped. Im tightly chained up and there is no way out. 

So after meeting prof just before he jetted off to the conference USA I felt slightly better but concerned that while he is away my cancer would grow even further. 

Prof was so kind and he waved his fee and said we should all go for a lovely lunch rather than pay his fee. I couldn't believe his kindness and generosity. I felt so bad that he waved his fee. 

As my pain was still not under control he immediately organised for me to be admitted to hospital for better pain management. By the time I got home I received a phone call from my lovely doctor Jason saying that he found a bed for me and whenever Im ready I should go over to the hospital. 

So I stayed there for 2 1/2 days. My pain was bad but not as bad as usual. However, my leg weakness was so obvious as I couldn't lift my left leg when asked. 

I slept like a baby in the hospital (probably due to morphine). I was lucky to have slept so well as lady across the room from me died over night. When I saw an empty bed i felt fear, shivers down my spine, and nearly cried even though I didn't know her. Its very difficult seeing, hearing that people die of cancer. On my online cancer group another lady died and all I can think is ..Am I the next ?

I am scared as I never thought about my mortality so much until now. Its hard to find that little space where you re happy knowing that I could be next. People say to me that they can go out and be run over by bus. Although, this is true and I do understand what they re trying to say but somehow its different when you know you've got this terrible incurable illness and you know your time is ticking and you know one day death will come for me. I hope it takes me to heaven :) but will see ... 

My friend kate said friends go on forever. So I said I hope they have a good communication from up there in heaven or down there in hell so I can still communicate and whisper secrets of life to her 

Cancer is slowly but surely beating me. I used to hope I ve got few more years to live but now I m starting to count my days and months instead....and I've got so many unfinished things I need to do .. 
I don't want to die not yet but I think my time is coming up soon. 
I often lie in bed thinking how does it happened? How does dying process go ? Does someone like death comes for you, talks to you and takes you away? Where do they take you? 
Is like Meet Joe Black movie with Antony Hopkins and Brad Pitt when death comes for him. What a great movie about dying that was ! I ll have to watch it again I think even thought its very long , about 3 hours I think but its very good.
I loved the soundtracks too 

So I was put on pregabaline, morphine and some other meds like omeprazole, paracetamols, etc

and discharged on friday. 

I was so happy to go home where I ve got all my things, my own tv, my own toilet ! 

Just feeling a bit nostalgic about old me and Croatian sea: