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....

Results Day .... Scary Stuff ...

Sunday, the day before my results was not easy. It wasn't so easy as my thoughts were never too far away from what tomorrow could bring for me. However, Im lucky to have some very kind and good old friends around me to lift my moods up just when I need it.

My good old friend from Uni Chung came with his girlfriend to London and he came around to see me. It was so wonderful catching up on our Uni memories. The way we used to study in our medical library, researching thru many sometimes boring books, our good old professors we used to have, and things you only do once in your life and thats when you re a student ! So we had fantastic time catching up and I ve realised how much more those memories actually mean in the bleak days like mine. Im so glad I had those wonderful 5 years of such a great and fun memories.

In the afternoon my friend Maria came to visit with her husband and our old friend from uni. We used to be flatmates at one point in our lives. Again remembering some great times and talking about our current lives was really and truly great. Thank you my good old friend

My friend Malcom sent me a surprise  CD. It was just the right timing (it arrived on sunday evening !) and he just seem to know what I need ...
I love a little bit of the Marvin .... awww good old Marvin. I enjoyed it on repeat in the evening to get my mind off the things. So soft and subtle ... and yes Whats Going On?

Monday was when I went in for my results. While I was waiting in the hospital waiting room  I felt awful. That morning my back pain was really bad. Its my mild degenerative spine disease that was the problems or at least thats what I ve been told.
I didn't bring papers or book with me and certainly wasn't interested watching a TV with subtitles while waiting  but instead I sat and enjoyed people watching. I found it very difficult to sit in a pain free position so I wiggled a lot.
I didn't know what kind of news to expect - the worst I though ! At one point I felt like crying ... I was doing everything i can ... not to think about my results. Seated around me, there was a huge mix of people, old, young, hair, no hair, wigs but they all sat there waiting patiently for their next news to come. Faces of those people were full of fear and uncertainties. Some couples were holding hands as to say it will be ok and the others were bored in the way. I can't imagine they did not worry!  They probably had a better coping mechanisms than some of us.

I was called in. My lovely young oncologist on rotation called my name. At first I found it difficult to stand up due to pain but I pushed thru and rushed in. Walking into consultation room nearly made me cry. I think subconsciously I ve prepared myself for the worst  and I honestly thought the moment he tells me its not a good news Id burst into tears.
How do I tell my poor old mum about my results? How will she react?  She lives in a constant hope. Hope that one day they will develop medications that might prolong my life, not necessarily cure me but make my life longer and with least amount of suffering.
So I came in and sat down. He told me there were some good news. In my mind I was immediately thinking whats the bad news?
So my bone scan was ok. No problems with it. Little patch on the right side but it was excluded from the ribs. Might be a liver tumour showing thru. So this is my scan:

Those scans are funny in way. They make me look like a chipmunk !

and than report:

My CT scan was also a little bit encouraging as well:

 So over all I was given some relatively good news. My cancer seems stable, hooray ! No chemo for the next 3 months, until my next scan :-)
Unfortunately, I was in too much pain from my spine to be happy about my results.

So for now I ll be on Zoladex  and Letrozole along with my monthly Denusemab.

I know eventually my cancer will start spreading and I know treatments above might not work as well and I could be on chemo in no time again but for now I ve got two choices:

1. Worry about my cancer spreading further each day or

2. Enjoy my few months of "freedom"

Guess what Im gonna choose ?!

Enjoying my local Thames beach ! 

The Emperor of All Maladies

This documentary should be a good one to watch. . Ive read a book when I was diagnosed with at that time "curable" cancer and it was an interesting read.

http://thestoryofcancer.org/

Uplifting and Sad Story

Only a few minutes long but well worth of watch:

https://www.youtube.com/watch?v=JOiZiIWQHRA

Ah dear my happiness is short lasted. Back to 37.7C ! Im really annoyed by this fever !

May 2014 - Another Trip Down to A&E - My Mysterious Fever

So my month of freedom was too much to ask for after all ! My cancer as usual dictates my life.
Yes you might say I brought it on myself but I had to try, try to stop this horrible illness from spreading through my body even further. I had to try and buy myself some more time before I ran out of all the options. After all when you are so close to dying thats when you realise how precious the life actually is and you want to do everything just to try and enjoy it for a little bit longer.

While I had "my month of freedom" I was on a search for alternative and experimental treatments. I had to do something as I know one day all my treatments will stop working

So I decided after some research  (along with my LDN therapy) to try Heat treated Mycobacterium Obuense. Luckily, my Prof of oncology is so open to new things and treatments too. So he gave me a go ahead to try some of those if I wanted to.

So I went to see professor of immunology for my Heat treated bacterial injections.
Its an injection given just under the skin of your upper arm and it should slowly stimulate your immune system. I was given a brochure to read on it and time to decide if I wanted to go ahead with it.
My uncle and aunty are both Vets in Canada and they have been using similar preparations on dogs and cats with cancer. The only possible difference is route of administration of those injections.

They ve approved them for use in London about 2 years ago from what I've gathered after reading about it. So I decided to give it a try

This was me on a day of my injection, having my veins warmed up for a blood sample with heat pad:

My friend Deesha came with me to keep me company. She made me laugh and her so chilled out attitude helped me greatly.
So we arrived to this swanky and very posh central London clinic. It seemed out of this world to me. Even when we arrived we had in my mind a "champagne reception". However its was only water with two glasses for us in a nicely presented tray !
Usual consent signing was scary ...as you re kind of signing your life away in a way. Then my dreaded injections came... They are still painful even after all this time ! and I must have had at least about 500 injections in various parts of my body in the past 2 1/2 years but you never get use to them and they still hurt like hell.
It amazing to think what human body can endure.

I had to stay in the clinic for an extra hour in case of allergic reaction and later I was free to go. Ive asked to get a copy of my blood results as well. At least they are improving a little !

When I got home I did have a little bit of reaction but I was told to expect that anyway.

So initially I felt fine. A friend of mine who I ve not seen for a long, long time now came from Oxford to see me and we had a fantastic time together, catching up on life and little life problems.
We had a really good walk, talk, we laughed a lot and overall I had a fantastic day with her.
Another friend had to cancel a trip to London due to tube strike (which later on was cancelled) and my good old friend Lizzie came to see me.
Unfortunately, the day she came I wasn't feeling that great. I had rather severe back/ muscle pain but I ve decided to push thru the pain. I wasn't gonna let this get to me and stop me from enjoying my day with her. We walked a lot but every now and than Id get those sharp, shooting and crushing pains despite of painkillers. But I kept on going.

This is me pushing and laughing through the pain:

Also I think my chemo Has Given me My Superpowers after all. With only one strand of hair Im Preventing a Shard building from tipping over ! Wonder Hair Woman I became....

By the way this was my sexy pose thru the pain !

On our walk we met an angry bird as well. My friend Kate reckons it might have been a bad worm ! If he lived in the country, that wouldn't be a problem she said !

So i had another fantastic day but little did I know that few days later Id end up in A&E yet again !

I had this high temp of 38C out of nowhere and severe muscle aches around my bum and lower extremities! I called oncology at 2 am in the morning. They asked me to go to A&E to have my bloods checked. I was hoping they would advise couple of painkillers....so reluctantly i got ready to go to A&E instead. 

As soon as I arrived by taxi they ve immediately got me thru. I hardly waited 2 minutes which was great. My nurse jokingly said that I was the first patient to walk thru the doors of A&E that night with a real problem. I came down on my own and I guess I wasn't looking my best and in a way she felt sympathy for me. Everyone immediately jumped and within a seconds I had more bloods done, was connected to IV fluids, IV antibiotics (meropenem) and IV paracetamols. Not long after I was sent for chest X-rays, ECG of my heart , urine sample and everyone was so attentive and kind to me. I arrived well equipped with all my medical info / current treatments including LDN and injections as well and they greatly appreciated it. However, they could not find the source of my mysterious fever. So I was sent home with advice to report to oncology the next day. My good old mum came to the rescue again as soon as she heard I spent a night in A&E.

I called my prof of immunology as well and he didn't think its was the injections but possibly start of something viral. There are a lot of people with a flu like symptoms around these day so it could well be that but I m glad that finally after 3 long painful days my temperature seems to be under control. 

Now I have to try and rebuild my energy slowly again 

At least my bloods have improved, hooray  !

This week was also sad as my last ties with my ex partner have been destroyed. Our frozen kids have been donated for research purposes. Again this was another reminder of what stupid cancer had taken away from me.

On 12 th May I get to find out what my cancer is doing to my body. Im so scared and dreading what they ll tell me. All the scans are done (Bone and CT). Im going in for results on monday and treatment planning. I would hate the idea of further chemo and at best I hope I ll be given hormone  tablets. Please cancer be gentle with me.

Wish me luck everyone !

May 2014 - Slomo

Nothing to do with cancer but really worth a watch:

https://www.youtube.com/watch?v=Xn87-mcnoVc

May 2014 - 10 Cancer Myths Debunked

Than again you read things like this ...
This is a very interesting read for cancer patients (and also for non cancer patients too)

http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/

May 2014 - Facing My Cancer Group and some dietary tips ..

Its amazing to think that when your life knocks you down there are people around you including parents, friends, our little dog etc to pick you up.
Since making my blog public and open to my friends and family I ve just been overwhelmed by their kindness, support, all the lovely messages, cards I ve received,etc....
People I ve known at some point in my life in the past, reached out to me and gave me much needed encouragement to carry on. We all like a little pat on our backs every once in a while but when you re ill you need it more than ever I suppose.
 I m happy most people spared some time for me when I need them the most. Thank you my friends and family...


During my month off chemo I intended to enjoy my life and laugh and smile like never before. I was determined not to have anything get in a way of that.
I was gonna be brave and face some of my fears.
Now one of my long term fears, in fact since my diagnosis, was going to the cancer group. Those groups are there for the reason but to me it felt the moment I get there ... I ll be facing my grim reality. So I didn't go, until now.
When you surround yourself with "normal" people, people with regular lives and non terminal illnesses, you tend to feel more "normal" yourself. Cancer reality often hits me hard in the late hours of the night or when I'm waking up in the morning.
So I have learnt to distract myself with comedy shows or series in the evening before I go to bed, I write my blog at night as it lets me get those bad things out in the open and it unburdens me.
Times in between, I do have reminders of my cancer all around me but I try to shrug it off. Recently Ive enjoyed a touch of aromatherapy and would give myself permission to take a short naps in the afternoon to recharge and let the body rebuild its natural defences.

                                   I think we all just need a little bit of love and joy in our lives



I also watch what I eat. I avoid sugar these days as cancer loves sugar (I cant believe I used to not only eat but inhale my chocolate bars like my friend Tesni says)
I do my green juices, eat plenty of veggy meals with occasional chicken or eggs.

Also there are those foods that unfortunately have a potential to boost your oestrogen. As my cancer is oestrogen driven I try and avoid certain things..

And occasionally I would have a little treat every now and then ....

However what I ve learnt so far is that the best things in life are free..

My cancer group experience:


So in May 2014 I finally took a first steps of going to the cancer group following couple of hours discussion on the phone with my best friend.  We talked about therapy, psychology, group sessions etc and came to conclusion that those are not for everyone really. For some people it might work well, for others not so well but I decided to give a group session a try.
That morning I didn't see myself as a cancer person ...I ve seen myself as a person who has a job to do. Person whose job was to sit and talk and observe others with cancer. That was my coping mechanism I guess and everyone has one inbuilt within them. So that was mine.

I walked into this group session a little bit late to find a room full of women much older than me. Im not sure if there was anyone younger than age of 50 really. Immediately I felt out of the place. However, in a way it was really great for me. It gave me a sense of hope. Majority of the women present lived with their "terminal illness" for years...5+ years at least and some were celebrating 15+ years of "stable " disease. Huh i wish I could be that lucky i thought. They were a funny bunch of people as well but also there were a few things I ve learnt along the way too... we all had the same fears and worries regardless of our ages and we were all chasing our happiness and looking for things that make us laugh

Cancer doesn't discriminate between ages and everyone wants to live, whether you re in your 30s, 40s or 70s. Everyones life is precious.

After all 1 in 3 people will get cancer in their lifetime. My male friends don't forget to check your boobs as men can get breast cancer too ! Around 400 men are diagnosed with breast cancer each year in the UK. So keep checking those boobies no matter how small they are !
Look after yourself. You only have one life so treasure it and don't waste it

May 2014 - Appreciating a little things in life

I ve not seen some of my friends for 1, 5 or even 10 years. Its amazing when you do see them. Its like the time has not moved. Within a few minutes you realise you were the same two people you were before and you ve got so much to talk about and share with each other.

My friend Deesha who I ve not seen for a while got in touch with me and asked me to meet her in Oxford st for a meal and catch up. She lives in London too so its easy for both of us.
It was so lovely to see her but street was too crowded to even have a little chat. So she said lets go for a free meal. For a moment I thought who on earth would give us a free meal ?! but I followed her. We arrived at Hare Krishna centre and as soon as we got there we were given a free meal and a drink! Very nice veggy meal and freshly squeezed apple juice. I felt really guilty for not paying for my meal so we wondered around looking for something to do in return.
We went to the kitchen and a chef asked us if we wanted to help fold some samosas. We had to wear funky blue cook hats ! and wash our hands thoroughly before even approaching cooking area.
I never thought folding and filling little samosas would be so much fun. We were chatting to each other, we met both chefs who were talking to us, laughing with us, telling us their life stories....
and actually for a moment I forgot I had cancer. I had so much fun instead of thinking about this stupid illness.
At the end after badly folding 50 samosas between us we went to the restaurant part of hare krishna centre to get some water. This is where people actually pay for their food, unlike us two! The main chef came around and gave us some more lovely food from the restaurant ! I couldn't believe such a generosity and kindness of people. He came to have his meal and sat next to us. I must admit I don't know much about religion. All I seem to remember that as a teenager I once rented a book from a library and it was full of interesting colourful pictures of a boy at the field surrounded by some animals.
So chef who sat with us explained more about the traditions and religion and it was really fun to listen. He traveled around the world so it was really interesting hearing his stories.
I came back home, happy to have had a new experience in my life, met some of the loveliest people out there and truly had a great time. Thanks my good old friend Deesha :).
For ones I didn't feel like a cancer "victim" but I felt so alive and normal.

Cancer is one of those illnesses that people can't see so everyone assumes you re normal and healthy like everyone else. People without knowing my medical history always comment how well I look. However, my body is cancer ridden at least the third of it and its hard to believe that myself at the times. On so many occasions my brain, my mind would want me to do the things, long walks etc but my body simply can't but you have to keep on going ....

So I try and find the things that make me smile. This is something silly I found...hope it makes you smile too...

April 14 - More CT Scans, Bone Scans, Bloods, etc

Following blood transfusion I was due for my regular oncology appointment to discuss my treatment so far...
I was worried about getting my 7th cycle of chemo. I was worried I would not survive. I expressed my fears to my oncologist. My body felt so exhausted from endless needles, endless chemos and hospital appointments. It was almost like constant boxing match with no finish !
Its like your body never gets to fully recover and than you re asked to go for yet another boxing match and it goes on and on and each time it gets really exhausting. I felt tired and bored of it as well! When people ask me how I am I think yes they want to know about my latest treatments but to be honest with you I was bored of cancer talk ! I was frustrated and angry that I can no longer live normal life.

I wanted to go out there enjoy the life I should have had in my alternative sliding door reality. I wanted to laugh, smile and love. I wanted to run in the daisy field, I wanted to go for a  lovely nature walks when everything is blossoming and waking up from a long winter months. I  wanted to feel the sun, the sea water on my face again. I wanted to worry about silly little things like running late for work,  my latest haircut, my endless chores, etc etc. I would give anything to erase my cancer life  and start over again. But I was stuck. I was stuck in this cancer ridden body and I know there is only one way for all this to end. However, no one asked me if Id like that kind of ending ?!
I know we are all gonna die one day, some people sooner, some people later but for now...

 Go away cancer I want to enjoy my life !!!
(Actually, I felt like swearing but thought i shouldn't )

So my oncologist has decided to give me a month off chemo to recover a little. In the meantime I ll have further tests, including bone scan as well. Ive asked to see my latest MRI scan before I left. My lovely oncologist Jason put them up for me. My spine especially my vertebra T12
looked even more hollow and it looked like there was more cancer within it. I kind of started to panic a little bit but of course there was nothing I could do about it ..
He mentioned it could be treatment thats draining my bones and might be good to get a bone scan done as well as part of the staging of my cancer. I agreed and left hospital.

Walking out of the hospital and knowing Ive got a month off treatment felt great. I felt certain sense of freedom but also worry. I was worried that my bones / my vertebra were even more brittle now.
 I ll have to be careful not to cause further fractures and I ll be ok I thought. However I was free for now ! Its almost like someone released me from this chemo prison and said go and live your life. I felt great despite of everything ..


More scans ...

So few days later I had my CT scan and my usual problems with my blood vessels. They ve tried 4 times with no success to insert a little cannula. At the end its was decided I d have CT done with no contrast of whatsoever.
Few days later I was booked to have my bone scan. I never had a full body bone scan before and this was something new to me. Again they had to insert a contrast ( more needles! ) before they do the scan itself. So I waited for 3 hours for the contrast to work.
 They positioned my in this huge machine and asked me to stay still. Machine will be in a close contact to my body, they ve explained.

 Ah dear, Im gonna be a pancake ! 

I ve imagined this huge machine will squash me down should they make one false move! So i closed my eyes and nearly fell asleep.
I was done and asked to sit in the waiting room in case they need to redo it. Few minutes later I was asked to come for a scan again of my chest only. Is this a bad sign I though?  I was desperate to know why they needed to do second scan but knew I wouldn't get any answers asking. So after they finished I was ready to leave. As I was picking my things from a chair I had a quick glance at my scan on their computer. It looked incredibly white on the ribs on my right side. This was the side I had pains and actually I still have them. So my initial thought was that cancer is now in my ribs too !!!
 I worried for a day or two after my scan but realised I couldn't change anything. So a couple of days later I decided to occupy myself with the little things in life that make me happy.

So I chose to do the best I can with my "month of freedom" and enjoy every moment of it :-)

(between my hospital appointments of course)

Kris's story of terminal (stage IV) breast cancer

Everyone should watch "Dying to Live" on BBC3 iplayer.

bbc.in/1obkSTB

Its an incredible and heartbreaking story behind Kris's charity CoppaFeel and gives an insight of what  its like living with terminal illness.

April 2014 - Blood Transfusion Day

April was eventful month...some good some bad. So I ll start with the bad ones!

It all started with one angry blood vessel !

I had some redness on my wrist. Redness seem to be around painful blood vessel. So I called oncology emergency line to check what to do.

The redness seem to be on my right side 

you can just about see it on this pic

Jason my lovely oncall oncologist on rotation answered my call. He recognised me straight away. Luckily he knows my history probably inside out by now as this was the third time I ve spoken to him regarding various problems. I have no fever so there was no need to go to hospital but if redness got worse or if I developed fever he advised me to report back .  

Also after my consultation with prof of  immunology who works at the leading cancer centre in London I started using LDN (low dose naltroxane) as well. This is medication used for drug addicts to help withdrawal symptoms but it seems like one of the "side effects" is that  it helps halt cancer growth or at least slows it down a bit and should improve your immunity. Its not licensed for cancer use. It might work or not, but since i ve got nothing to loose really I thought it was worth a try. LDN can cause variety of symptoms but some people have no symptoms at all.
Please refer to the website below for more details:

http://www.ldnnow.co.uk

 So after taking it in the evening I sat down and I anxiously waited for some sort of symptoms or allergic reaction to appear but I seemed ok. So I went to bed. My sleep has been a bit disturbed. 

I woke up the next morning and everything was fine but I ve noticed a tiny little petichiae      ( little red spots ) on my legs and arms. I should say this has got nothing to do with my LDN !

You can just about see little blood spots (petichiae)

 Last time I had petichiae I had problems my platelets. So I called oncology again. They sent me to haematology , first time I ve been there for a blood test. It took 3 nurses and 5 needle attempts to get some blood out of me ! Unfortunately, this is very common problem with chemo patients. Their blood vessels get destroyed by numerous chemo infusions and cannulation so it gets more difficult each time.

Vampires strike again !  

  I wish I had someone with me today but I didn't want to disturb my poor mum and ask her to come over again. 

While I was waiting for my bloods results I was seated in the bed opposite a lady with serious problems. That very moment, she was surrounded by the team of doctors and was fighting for her life and it put shivers down my spine. She is another cancer patient. She was having cardiac arrest and they were trying to resuscitate her. I was there to observe that. At one point they thought they ve lost her and her daughter and husband burst down in tears. I nearly started crying myself!  This is something so emotional for them, it almost causes physical hurt and pain. I can see it in their tearful, sad and uneasy to watch faces.
This is something my family will have to go thru one day, I thought and I could feel tears fall down my face. I had to look away and think of something else to take me away from that so real and such a painful moment. So I thought of a nice sandy beach somewhere far far away from here....

Soon after that my mum came down without telling me and it was so so nice to see her and not to feel alone. She got rained on and was completely soaked but she was here with me.

Doctors told me my platelets were 10 and I ll need blood transfusion. Ive asked to have a copy of my blood results and everything was so low and so below normal range!
My immunity cells, my red blood cells, everything was so low ....

They said my blood transfusion will be booked first thing in the morning.
To be honest with you I was afraid to go home as I was petrified of bleeding out. Slightly more violent cough or a nose bleed .... and I would bleed out I though ! I was really scared.
In my "reasonable" fear I kicked up a little bit of the fuss. However,  apparently it takes 5 hours for blood transfusion to be done and they couldn't do it on a day.
So I went home hoping for the best. Sometimes, I wish I never had any of the background medical training. It would be so much easier not knowing anything about the human body and how it works.

As soon as I got home all I could do is sleep. My energy levels were so low 

My friend Omar came to see me with his sister for 1/2 hour after hearing I wasn't so well. It was really cool to see them but I always criticise him for coming all the way down just to see me for half an hour. 3 hours round journey on a train is a long way to travel ! 

Blood transfusion day

I'm feeling very sleepy and tired even thought I just got up.  

In the morning of my blood transfusion I requested for someone more experienced to do my cannula . Mike this lovely consultant nurse came over, found a blood vessel with an ultrasound and did it all in a matter of what seemed like seconds and almost PAIN FREE wow ! It was amazing. My A+ blood soon arrived and off I go ! 2 hours per bag is how long infusion lasts and I had 2 and platelets as well. I was connected to my new fresh blood - felt like a hungry vampire ! 

Half way into transfusion my whole body felt so much better. I felt perked up and normal and my symptoms like a headaches and tiredness just disappeared. Wow I was so amazed. However it was really strange feeling having someone else's blood going into your body. Its like you re taking someone else's possessions and using it to fix your own problems. Strange feeling but whoever donated this bag ( those 2x 320ml bags ) I will be ever so grateful to them. So please be kind and  donate the bloods as person receiving it will be so so so grateful to you. You never know whose life you re gonna save. 

Platelets ( 35-40 mins) to go and I ll be as good as new 

             My bloods on the left
             and platelets on the
             right

March 2014 - Emotional Roller-coaster, Joy and Me...

March has been a little bit better month for me. I felt a lot happier as my situation (after being discharged) started improving a little. By improving I mean getting out of the bed, walking and feeling a tiny bit of the sunshine on my face during those initially very short walks.
For now Im living in a hope. In Hope that some good treatment will come my way and "cure me" of this horrible illness but also I m trying to be ok with dying too. I don't like it and would love to live for another at least 30-40 years but I know thats hardly gonna be possible with my terminal prognosis. I have to be realistic a little I guess.
So as I said I'm trying to be ok with dying but what Im struggling to accept is that perhaps one day when cancer takes its toll and no medication helps I might end up in a wheelchair, unable to walk. I know there are plenty of wheelchair users out there and I really admire them and their strenght.  However, for some reason I have the real fear of those wheelchairs. Its something I can't explain really. I feel like I'm ok while I can walk, I have a little bit independence, I can enjoy my walks around the river and be with my own thoughts and its great. I kind of enjoy my own company at the times, not always though! Than I think if I was to end up in the wheelchair I would loose that. I love standing on my own two feet and feeling the ground Im walking on. So not sure if my fear is unreasonable or not but I feel Ive got enough on my plate with this cancer as it is .... when a day comes for me to go I d like it to be in my fairly mobile state if possible and with least amount of suffering...

Than my other fear is my parents. My parents have been so good to me and my mum has done an amazing job of looking after me whilst I was under chemo and unwell. She s so amazing that at the times I don't even have to lift my finger while I'm going thru this horrendous treatment.  Any time day or night if I need anything my mum would go miles to provide me with whatever it is that I need.  I do worry about her a lot. I worry how will she cope with her only child's death, I worry who will look after her or my dad when they fall ill. I know they ll have each other at first but when one of them dies how will the other cope? I do wish for them not to suffer. I fear my mum will be so heart broken when I go that she will neglect looking after herself. I really wish when I go that they ll find some comfort in each other and our little dog Freddie and that they will not suffer much. 

Today on 13th March,me and my mum tried to go for a walk but fog and coldness brought us back to the big and specious shopping centre ! Ah dear, what a shame we thought and giggled.   Even if I do have terminal illness I do like to dress nicely and wear comfortable clothes. However, most of the time I still look very scruffy ! We didn't buy anything that day but had a nice relaxing tea (since Im denying myself of coffee because of my liver) and we watched the world go by.

In March I also managed to meet up with two of my very good friends Tesni, Becky and meet little Sophie as well. What a cute and happy child she is. Mostly, when I was with them it felt like a good old happy times but at the back of my head I kept thinking how many times we will have an opportunity to meet like this before Im gone forever? I don't want to think about the death and Im desperately trying to push those thoughts as far from me as possible but somehow they always creep up on me and can be very unsettling at the times.
My close friends from all over the country travel to see me, they make me forget even if for a moment that I have this terrible illness and I m ever so grateful to them. Most try to say funny things to cheer me up like my friend Malcolm who sat at my computer desk, chose the happiest songs he could find and started singing out loud and completely out of tune. We laughed so much that my tummy started to ache a little. We had really great time, two people with no worries in this world. Thats how it felt.. but since spending time in the hospital at the end of february I still have a lots of aches and pains. My right side around my liver aches, I have aches around my ribs on the same side, My lower spine feels like I have a golf ball permanently stuck in there and can't yet bend my spine forward/downwards and upper chest feels tight, almost like I have a really tight bra on 24 /7.

Despite of my aches and pains Im still trying to push with my daily life. Im still trying to walk as much as I can. Im still trying to enjoy little things in life like go around London looking for quirky little things on the secrets of London that my friend Omar has sent me. So generally Im happy and grateful Im still alive ....

                                                Me monkeying around