Not a Good News Im Afraid ....

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 ...

Cancer Song

I'm still in the hospital huh (will write more about it soon) ... this is what I found on Stand up to cancer website in my rare pain free moment I had . It must be the first  hip hop cancer song I ve heard 

......It took Lupe Fiasco, a hip-hop artist with a decidedly punk rock sensibility, to come up a song about sickness that eschews the treacle-filled potholes that dot the road of creative works about disease, and instead pumps up the volume with unflinching power. “Mission,” which debuted earlier this week, is, as explained on Fiasco’s YouTube page, “a track to empower those facing cancer, revere cancer survivors and remember those who have passed to due to cancer related illnesses.” It opens with a minute and a half of overlapping sound bites from a variety of cancer survivors — including the Gap Band’s Charlie Wilson – and then segues into three distinct verses telling three distinct stories: a woman with breast cancer who decides “You can have that hair cause real talk bitch, I think I look better,” a 7 year-old child with Stage 4 cancer who thinks, “Killing kids — well, kiss my ass; it ain’t killin’ me,” and a man who went “undiagnosed and untreated” and says, “If I died, it’d die with me, so let’s do it.”

http://www.youtube.com/watch?v=-R-_sxP5kCk&sns=em

A&E ...

After  another two trips to A&E I found myself admitted to the hospital again !
More about that soon ...

Cancer Takes Away So Much

I wonder what would have happened if my life didn't change and stayed stationary for the past 5 years ( years before my cancer ) 

 Yes I d probably moan and complain but wouldn't have to deal with cancer at least ! However, other people live normal lives, they go thru normal changes.  People should treasure those changes. Yes you will get a little bump on the road every now and then  but if the times of changes are rather good that treasure them, enjoy them, don't try subconsciously find the way to destroy them. Enjoy and be content with what you have, don't look for bigger or better. We are all flawed. We are humans and we make mistakes. 

Enjoy the simple life as that's the greatest life ever.

Generally, us humans we like to hear the good, positive  news. Whether that's engagement, great holiday that someone had, etc etc. I feel people don't generally like bad news. 

Some people pretend that bad news are not happening around them as they are happy and they don't want bad news to ruin their happiness while with others it helps them put their life into prospective. Some simply don't know how to react to them. 

So mainly we all want to surround ourselves with good news, happy people and happy environment. We re all chasing that invisible happiness in whatever shape or form that might come and we craving to be loved by someone. 

I want to be loved by someone as well. I know my parents love me, my dog loves to see me but that's not the kind of love I'm talking about. I m talking about movies like, romantic kind of love. 

I want to feel cuddles in my empty bed at night. Nights are long and scary at the times. I need to feel the person breathe next to me, hearing their breathing makes me feel Alive 

I want to feel loved and experience things that other people do. 

My friends recently announced their engagement. I was truly happy for them. Happy that I'm sharing that moment of their joy even if it's thru Facebook newsfeed ! I started crying. Not because I was jealous or envy them but I started crying thinking that I ll never get to experience some of the normal, simple, the most natural things people go thru in their lives. 

I ll never know what it's like to have a kids of your own, what it's like to be cheeky grandmum, I ll never know what it's like to be old,  I ll never know any of those things. 

Due to the war back home where I lived I've lost few precious years of my youth, I was late starting uni, I guess I was late starting life. 

We all want to climb up this security ladder before we do the things that we really want to do and then it's often too late.... Sometimes you can't have all your eggs in the basket....you ve got to take that risk and live the life that makes you happy. 

 I have plenty of friends who enjoy living on their own, enjoy their lives as they are but I guess I'm one of those who thru my terminal illness at the times will be longing for the life I lost, life partially experienced and life I ll never have. 

You can say I'm lucky I've managed to experience a lot in my life so far and should be grateful. There are teenagers out there dying of cancer young and not experiencing 1/4 of the things I did and it's sad, very sad 

However this is my life and those are my longings and wants and needs 

There are days when I wish I can get drunk to perhaps numb my emotional and even physical pains but I know I can't. I can't do that knowingly to my  dear family. I can't numb the pain, emotional pain nor physical. Painkillers have stopped working for me so the choice is to live thru the pain or go on much stronger meds with sometimes poorer quality of life due to side effects 

Since my diagnosis I ve never felt like myself 

There are constant changes, there is a constant need to adopt to your new life , new pains, new doctors, new surrounding. I don't want that change now. I want things to stay as they are for once. I just hope that my cancer would stay the same if I did and not change, not spread. 

With this cancer almost every day I feel like a 40 year old trapped in the body of the 80 year old. I don’t know what its like be an 80 year old and I will never get a chance to find out. My cancer is incurable, aggressive and has taken a hostage of about 1/3 of my body. 

People tell me I look great but I never feel that great myself. I have too many aches and pains and so many scars both physical and emotional. My body has been battered, crashed and destroyed  in all possible ways. 

I don’t see the way out of this rut. I don’t see a positive way. I feel the only way out is to surrender and let the cancer win. But how could I ? How can I do that to my loved ones ? 

Once this dark illness enter your life it stays with you. It's never too far away. 

The only way to live thru it is to be pragmatic as my friend said, get on with it and enjoy a little bit of happiness that comes your way every now and then ...  

My Friend Juliet sending me some colour into my life

Thank you my dear friend

Im Struggling ...

My days these days should have been all about having more fun and recovering from chemo but unfortunately Ive been struggling a lot with my aches, pains and my "mysterious" fever yet again
At the times I don't know what to do with myself. How could this be so painful... why do I wake up at night with such a pains.. how much more pain can one person endure?

Last night I had a temperature of 38.3C. and rather severe muscle aches. Even painkillers are no longer helping. I woke up in the middle of the night and couldn't even move my legs due to pain ...I had to do it with the help of my hands.
Nights are usually worse than days. My temperature slowly starts rising in the evening and by midnight it usually goes up to 38.3 C. In the mean time I can feel pain spreading thru my legs. It usually starts around my upper legs, my bum and goes down to my lower part of the legs. It almost feels like i have no overlaying skin just muscles exposed and they are raw to touch and painful , so severe. My face gets slightly healthier red colour rather than my usual yellowish, olive complexion ! However I know this is temperature talking huh.  I feel no sore throat or any other aches its just my legs and bum and at the times it drives me crazy.
However, I know I have to get thru this. I can't allow this to get in a way of my next 3 months (fingers crossed) of chemo free time.

My bacterial injection site is still a little sore but Ive been told its a good sign

There will be a breaks with a bit of the sunshine too....