I seem to be constantly drifting between "prison" and "freedom". I sat on the bench the other day and this picture reminded me of my life at the moment .... One side is representing freedom and the other side is all chained up nasty prison
However, I seem to be spending more time in my little prison than anywhere else and I m starting to hate it. Sometimes its difficult to see a light in all the darkness that surrounds me.
So here is whats happening in my cancer life so far .....
I continued having my stubborn fever each evening. It finally reached the point of 39.5C on tuesday and I ended up in A&E again. As usual thay ve done most tests to exclude viral or bacterial infection and I was given paracetamols / antibiotics and sent home.
Next day same thing happened and it didn't feel right using antibiotics for unknown cause. So i was back to A&E and this time admitted. All the doctors around the hospital seem to recognise me even in the corridors. Some probably think what to do with me and others feel great sympathy for me. However, for me its great to see some familiar faces at least !
So I was admitted for further investigations in London' s St Thomas Hospital. I was examined from head to toes. Now most doctors examining your eyes will say look left, look right. However, my doctor said look at the Big Ben ! (I could see it from my bed!) Now this moment can be interpreted in so many "ahhhmm" ways :-) and we giggled at the naughty things for a bit.
So this is the "famous Big Ben" view from my window
My friend Omar reckons that most people would pay good money to have a view like that from their hotel room. I know he was just trying to cheer me up but very little can cheer you up when you re in pain. At that point I had rather a lot of back pain, liver pain and temperature at night. It was exhausting at the times.
I was lucky to have a sweet little lady across the room from me. She is 94 years old and such a great character that made me laugh at the times. We had our meals brought to us. I ve asked if her lamb was tasty. She said it was tasty but it was getting cold. She said I only have one tooth left and its difficult chewing food with it. It was funny and sweet the way she said it. So we both giggled a little.
In the meantime my oncology team was doing their best to transfer me to the hospital where I was regularly being treated. They have already organised CT and MRI scan for me to have the next day. So following my ultrasound I was transferred to my regular hospital thanks to my lovely doc Jason who called to check up on me. I really appreciated his care and interest in my well being.
To so many doctors you eventually become just a number and I was so glad I wasn't feeling like that with my current oncology team. Knowing that they care when you are so unwell gives you a safety net you need and well needed emotional boost too.
So my ambulance transport arrived later on and have taken me across to my regular hospital.
I had such a lovely chat with one of the older paramedics. He was so pleasant to talk to and within 20 mins I felt I've known him for years. We even managed to laugh a little which was really cool
When I arrived to "my hospital" I felt like I was back to familiar grounds, almost like being back home. Only this time I was given a private room, all to myself which was fantastic. I didn't expect that at all but it was nice. Again I had a view that most people would pay a lot of money to wake up to in the morning
On a day of my CT and MRI scan I was in so much pain. My back was hurting so much that walking, sitting down or lying down was almost impossible. I could feel every little nerve around my lower tail bone and my legs and at the times it felt that my lower body would give up completely. They wheeled me down to the scan room. For the CT they injected a dose of contrast which made me scream out so loud as my veins are so tiny now and fluid injected under such a pressure is not great I tell you !
While I was waiting for porter to take me back to my room I didn't know what to do with myself as I was in such a pain So when I came back I ve asked for some morphine as none of the painkillers were helping the pain now. With morphine I managed to relax a little and sleep for a bit.
The next day, I had some news from my scans and its not the news I was looking forward to hear.
My prof wasn't there on the day so I have seen a new oncologist and a registrar I ve seen before.
I was told my fever is due to my cancer. My cancer had grown in size and is now 10.5 cm in size with a few smaller ones around. Its still very aggressive and spreading fast. My back pain is also aparently due to my liver cancer and he also mentioned that in some cases people get shoulder pain too. MRI shows nothing eventful. So those are my scan results:
My CT scan:
and my MRI :
When this new oncologist told me the news I was left with a massive lump in my throat. He continued saying that its the matter of trying to manage my pain now and that I can go home but to be on a lookout for signs of the liver failure. I felt and still feel I ve not got much time left on this planet now... I was hoping I d live at least for another year but now it seems like I ll be lucky if I could live for another month ! He did mentioned there still might be an option of chemo but didn't seem that enthusiastic about it at all. In my mind I felt he s kind of written me off.
When they left tears started falling down my face like a waterfall. All I wanted to do is fall asleep and forget about all this. Maybe if I wake up they would give me a different news, better news.
Mum came to see me and I told her devastating news. News we were dreading to hear in the future but not so soon. We both cried a little. Mum also said that I never looked better and its hard for her to believe that. My skin colour had improved slightly. I wasn't so yellowish. My skin is a lot clearer with no chemo, I ve got no chemo pimples. Over all I looked really good.
This was me in the morning before they delivered bad news:
The night I came out of the hospital I cried a lot in my bed. My friend Kate tried her best via Facebook but all I felt like I wanted to do was continue crying endlessly.
So, I cried thinking what this doctor was trying to tell me I ve got not much time left now. I cried as this came so much sooner than I thought. I assumed I d have at least another year! I cried as mum told me if I die she will die soon after me as she won't be able to cope with emotional pain of loosing her only child. I cried as I thought my birthday in October is now nothing more than wishful thinking.
I cried as I kept imagining what everyone would feel like if and when I die. I kept on thinking about my poor parents and how they will cope. I kept on seeing myself in a coffin whichever way I turn.
It was too much to deal with so I used morphine to numb the pain and to help me fall asleep. Even if for a moment I get to forget my worries and pains both emotional and physical i ll be happy.
I use to force myself, push myself to carry on and make the best of the life Ive got left but now .... I can't do that any longer. I feel like my body is surrendering, giving up and Im slowly giving up too.
Im sorry I can no longer be positive and hopeful. I can no longer see the light in all this darkness that surrounds me... Have I only got a month to live before my liver starts failing? I vomited but Im not sure if its because of my news or because of my disease. Im loosing weight and Im not eating.
My mum cried in the room next door too .....
I can't even reply to any of the messages my friends have send me as Im exhausted, exhausted both emotionally and physically. Im sorry my dear friends I will reply soon ...
My dear Dani, I am so sorry! Can I come around and see you even for a tiny bit on Monday? Elizabeth
ReplyDelete... we love you - if there is ANYTHING we can do - just let me know ... Elma i Mesko
ReplyDeleteThoughts and prayers. Niall.
ReplyDeleteYou are so beautiful, Dani. I am praying for you. Xxxx
ReplyDeleteMy heart breaks for you. Keep fighting xx
ReplyDeleteThank you for your lovely, supporting messages. I really appreciate it at this difficult time
ReplyDeleteThank you
Love you all
Dani xxx
Dani, I've just read most all your blog. Strong and brave indeed you are. I guess we are both Librans. October's closer by the day. xx
ReplyDeleteAre you ok? Thinking of you x
ReplyDeleteFingers crossed additional breakthroughs to help the immune system recognize breast cancer or any other cancer and "kick the butt" of the breast or other cancer would come for us SOONER rather than LATER, since I happen to have breast cancer with suspected lung and liver mets, for I may have been in "breast cancer denial" for the longest time for I seemed to be unable to believe I had such a thing since I thought that older women past the age of menopause usually got it.
ReplyDeleteFingers crossed additional breakthroughs to help the immune system recognize breast cancer or any other cancer and "kick the butt" of the breast or other cancer would come for us SOONER rather than LATER, since I happen to have breast cancer with suspected lung and liver mets, for I may have been in "breast cancer denial" for the longest time for I seemed to be unable to believe I had such a thing since I thought that older women past the age of menopause usually got it.
ReplyDelete