A Little Bit of Cancer Humour in Those Dark Days ...

Even at the most horrible times in our life we do manage to find a little things that make us smile.
My friend Silvi was diagnosed with her rare blood disorder, type of a cancer. Less than 10 years ago around christmas time, she ended up in the hospital and was fighting for her life. Somehow one day while she was in the hospital she stumbled across this old book that seemed like a very interesting read. As she was reading it she had seen a chapter on dying and like many cancer patients she was curious about it. In the book it says as long as you can see the tip of your nose, you ll be ok. You ll live for at least 3 months.
Apparently, when people are dying their eyes fall deeper into their sockets and it gets trickier to see their nose or something like that. I m not sure about the whole theory behind it.
So in all my pain and suffering while I was in the hospital myself, I remember that story that Silvi told me many years ago. So I kept on checking my nose every single day to see how long I ve got left to live. I was happy to see my nose :-) every day.
So even up to todays date we still laugh and giggle via Skype and jokingly say that we can still see our nose ...

       
Once I was at the hospital waiting to have my bloods done the day before my chemo in the waiting room there was five of us including two older men in their 70s. They ve just met and there were talking about kind of cancers they had. I couldn't stop myself from over hearing their conversations as its only natural to be curious about those things I guess as all 5 of us we were going through the same.
So one gentlemen had a lung cancer. The other one asked what kind of test have they done on you so far. He said they ve done bronchoscopy (its where they insert a little camera down your airways).
The other gentlemen said thats sounds like a ancient african hunting ritual, what is it?
At the point it was not only me trying not to laugh in our bleak situation but I could see others giggling to themselves.

Its still amazing to see how talkative cancer patients can be in the waiting rooms and funny too. I guess we are all going through the same problem in a different way regardless of you age or sex. Cancer kind of brings people together at whats considered bleak and horrible situation and its lovely to see that people still find the things to giggle and smile about. Simple things in life ...

February 2014 - 6 Days in Hospital Bed

Just when I thought things are getting a little better,  despite of a big emotional pain especially around Valentines day I felt a lot calmer than I ever was, happy even if I could say.
I started enjoying my life in London. I enjoyed my little walks around the river Thames (not the freshest of the water) ! I even enjoyed seeing tourists, crowds gathering and taking pictures of the famous Tower Bridge. All this made me feel alive and gave me a certain sense of belonging.  At the times it all felt so unreal. Id always have my music with me wherever I go and it made me happy.

The night before I had a meal, watched some telly and went to bed. Mum wasn't with me that night as she had an appointment that she needed to go for. She wanted to cancel it and be with me but I ve encouraged her to go and reassured her that I ll be fine. However that night I was way too far from being fine ! 

I started having stomach pains around 2am. There was a really bad acid built up in my tummy too. I don't think I had much sleep at all that night. By the morning I started to feel worse and worse. At around 9 am I finally picked up the phone and called oncology and they ve arranged ambulance transport. By the time they came to pick me up I could barely stand on my two feet! I felt weak, I felt sickly and very dizzy at the times. At the hospital I didn't care that they needed to insert cannula ( more needles) I felt strong pains in waves all across right side of my stomach and very nauseous and weak. I honestly felt like I was dying ! Mum I ve noticed called a few times and she kept on calling. When I picked up she was very panicky and scared. I told her I was admitted to the hospital. She rushed over with her friend. I was so happy she came with a friend as she was beside herself when she saw me. She immediately grabbed a blanket to cover me as I felt very shivery. 

So after X-rays, bloods etc a young doc came and told me I needed ct scan as they think it's my disease blocking my intestine. I'm not allowed to eat ( not that I wanted to ! ) or drink anything at all. 

I didn't have my bed yet just temporary big chair which I found very uncomfortable.   

Eventually half dead they ve sent me for a CT scan. As I recall in my half conscious state my mum was holding on well. However later on I found out she kept popping out to the loo or to get some water as she was trying to wipe her tears away so I wouldn't see her. Apparently I looked so bad that she was worried if I was gonna survive at all. 

They took me in for a CT scan. I was in so much more pain despite of pain relief I was given. When they tried to push pre dosed automatic dose of contrast thru my little cannula and my tiny blood vessels I thought the back of my hand had been ripped apart. The pain was unbearable, I screamed and I felt my body was slowly giving up ! That night they ve kept me on the ward hydrated with IV body fluids. I had some morphine too to keep me comfortable. 

The next morning my stomach was still bad, couldn't eat or drink. I ve managed to get to the loo don't know how really.  I looked like hell.  It was like a horror movie.  Nurses were surprised I've managed to walk down to the loo without any help or a frame ! Only my drip ! 

The young junior doc came to see me. I'm my half awake state I ve asked what was on ct and what can be done. She said they think it's my disease blocking my intestine. If by Monday I don't feel well I ll have a camera down my throat / endoscopy to see what's happening. I ve asked what's next ? She said if my cancer is blocking it in some cases they can do surgery but in my case that might be difficult so it was the matter of making me comfortable and pain free. Gosh I thought, so they re just leaving me to die now ! This is it !
I felt I was ready to let go of the pain, end my suffering and also end suffering of my poor mum. But on the other hand I didn't want to die ! I wanted to live for longer, I want to be present in this world, I'm not entirely ready to go yet ! I want to enjoy sunshine, I want to smell flowers, watch to clouds roll around ! Suddenly that realty of dying was way too close now, closer than it will ever be but I'm not ready yet. As soon as doc left I burst into tears and I was too paralysed with emotions to move. 

Some people might say that doc was so insensitive but in a way I appreciated her honesty and bluntness. 

That day my friend Omar and his sister came all the way from Bham to see me. They ve only stayed for 15- 30 mins and than they left as they wanted me to be able to talk to my parents. When they arrived I had a such an urge to have some sort of juice (against medical advice !). His sister rushed to get me a juice and instead of one she brought two bags full of juices, bottled water etc etc. I couldn't believe her kindness and generosity ! I do like her and I wish I knew her better but she felt she s always getting in the way and would leave me and my good old friend to chat about our little things. They ve tried to cheer me up a little.

As each day went by I started improving a little and nurses on the ward have noticed that too. They were ever so good and gentle with me and I didn't ask much of them. 

Few days later I started feeling a little better.  

They ve sent me for an X-ray to check on progress. I expected to see improvements but my scan showed otherwise! My small bowel is still blocked at one part and dilated at the other above the blockage ! So I had to stay in until I'm able to eat and drink and open my bowels ! 

Finally on weds they said I could go ! All the nursing stuff was very chatty and talking to me and praised me how I'm  looking so much better and they all commented on my super cool slippers my mum bought me 

Now even thought I lost 2 kgs while I was in the hospital ( from 59 to 57 kg ) I was happy to be alive ! In a cancer world we say survivor for a person living with cancer but I think rather than survivor I feel "aliver", more alive than I ever was but extremely tired. I was happy to be here for a little longer. I was happy to be "home" in comfort of my new flat, surrounded by the things I love.
So next few days were all about pampering, resting and taking small steps one day at the time ....

                                                Me, the day before I was discharged

Some random thoughts about my friends ....

This is sort of a letter Ive written to myself early this year about my dear friends, people that surround me. I found it under notes on my computer ... I wasn't sure if I should post it or not but since its part of my journey....
(again some names have been changed but story remains the same)

Early 2014 made me think about life a lot. Whats life all about ? Why are we all here on this planet ? Why do we disapear either due to illness or die of natural old age ? I ve asked and discussed those questions with some of my very good friends. I wanted to know why things happen in life, why are we here for short or long amount of time? Why do we suffer so much? Why do some people stay in our lives for a long time and others leave?
I know that aside from my fantastic family who care about me there are many others who walked into my life for no apparent reason, unpredictably and stayed with me ever since than. So often I question why some people you meet stay and why do others leave? Is it because you make a little bit more effort with the once who stayed or is it something else. 
What i ve realised is that each one of them who stayed with me posses a wonderful qualities and showed me human compassion and care in unimaginable sort of way. 
Those are just some of the examples of that human compassion and care and there are many others not mentioned here ........

My friend Omar who has been my friend for years, keeps on looking for a new pioneering treatments that might cure my cancer  almost every day. He is constantly telling me not to give up. He and his sister even went for a few private consultations for me. They didn't have to do it but I'm ever so grateful they did and he told me the reason why he did that. He said I don't want my best friend to die and Im gonna make sure I do everything I can so that doesn't happen. 

My friend Tesni comes to visit wherever I am, driving 2-3 hours to see me for a day . She always says if I need anything she can cancel her day / days to come and stay with me and help me out with whatever I need. I don't even question it at all as I know her well enough to know she would do it. She s been great throughout all of this. Trying to turn negatives into positives in every way she can. I m ever so grateful to have her in my life and call her my friend.

Than there is my best friend Silvi cancer survivor. We ve known each other for 18 years! She listens to all my complains for hours without having a word in our conversation. I sometimes need to vent.  I d talk for hours, only later realising that she had not said much for the last 4 hours because I didn't give her a chance ! And she ll stay up late talking to me only to be up again at 5 am to go to long and hard day at work, helping others. However despite of all of that she s still talking to me ! and she is still my dear friend after all those years.

 My friend Malcolm who I've known for a long time still writes me a cards and long emails after busy day at work and sends me some of his little favourite things in the post. Music, he believes in music and happiness that it brings. He's even learning to play his saxophone and I must admit he is really good at it. It was very impressive that one day he carried his sax form oxford to London on a public transport just to play it for me and just so I can experience a magical live sound of sax in the privacy of my own home ( well rented flat I shall say. !). He played xmassy song for me and it was truly magical. I felt like a little kid, looking forward to xmas and still believing father christmas exists. I still remember when I was in Oxford he d pop around and say i know you might not feel like a company at the moment but I was passing by and I wanted to drop off some flowers to you. That was so sweet and I ll always remember that.

My friend Bobby who facebooks me every now and than and visits with his girlfriend whenever he can despite of going through tough time himself. We would talk about new technology for ages and when he got unwell share some little life things that only we can understand.

Than my friend Lizzie who texts me every week sometimes even every day of the week. We talk about every day problems, she tells me about the things in her life that make me even for that moment forget about my problems and I'm ever so grateful to her. We talk, we rant, we bitch about life and it's really good old fun. I'm ever so grateful she s in my life.

Monica who when I was re diagnosed again sent me a pic every day of her garden flowers to cheer me up. To make me forget about what I'm going thru. Bought me flowery frequencies to make my room, my flat less prison cell like entrapment.

Juliet great expressive dancer. Reading her messages every day brings me cheers, hope and lightens my day. We talk about deep stuff but it's always so joyful as it makes you look at your life in a completely different way. It's not all doom and gloom after all . Recently she  had to make some life changing decision and she managed to  turn it all around with her positive out look and Is happy now. It makes me happy to be part of her wonderful life journey,

Patrick who emails me every now and than and not forgetting about me. He talks about his life troubles, I talk about mine. We talk about our "not clear cut past" and its just wonderful. We rant about little things in our lives, I probably talk more than I should but he s great listener and is always giving a new prospective, new look, positivity in life. I still feel included in social things he organises even thought I can't sometimes attend them.

My work friend Rachel who s been so great thru all of this. Texting me to check how I'm doing and saying thinking of you and Luv you at the end of each of her texts.

My friend Farah who reminds me I m still here and not forgotten and to keep going ...along with some of my other work colleagues Kerry, Hetty, Adi ( who by the way gives the best hugs ever !), Bev  ... all brilliant people I'm glad I met. Bev I do miss your cakes !

My friend Mark is very good in trying to cheer me up. He creates those super funny and really cool videos that make me giggle a lot. He s got this amazing musical talent. We ve know each other for years now, since our uni days ! And have some fabulous memories from back than

My friend Mark (you tube link of his latest cancer awareness gig):

https://www.youtube.com/watch?v=0jhE82lRXY8

However I do prefer his older stuff ... just him and his acoustic guitar :-)


My friend Becky who would send flowers my way since my first diagnosis... so lovely to meet her little girl. One very happy and smily kid.

Than my friend Paul who checks on me and my progress. Wishes me well and tells me all about his love story and travels. He is very simple in a good way but yet very cool person and i m glad to call him my friend.

My friend Maria who despite of a long distance between us, all the way from Greece checks on me and keeps asking me how I am. I feel Im terrible friend as I hardly ever remember her birthday, keep on forgetting her son's birthday and all those important things in life ...I can no longer use "chemo brain " as an excuse - just kidding- but she forgives me and still keeps on emailing me and checking on my progress.

Even my ex G another cancer survivor who was shocked to hear about my now terminal prognosis, still keeps in touch and is telling me about his new life and sending words of encouragement my way

I think its wonderful that people reach out to you in a time of crises, pick you up and give you strength to carry on. 

There are many people who walked into my life for no reason. They ve pulled me up in their own way from the bottom, gave me strength to carry on when I was on the verge of giving up and gave me will to carry on. I don't know what I have done to deserve to have such a wonderful people in my life but I know one thing for sure they all  touched my life in most wonderful and unpredictable way. They might not even know that.  I m so glad I'm surrounded by such a wonderful people around me. Little things in life matter the most. Thanks to my dear friends I now have a lot of great memories to carry around with me so even when a days are so rough I m reminding myself at what a wonderful life I ve had so far surrounded by a people that mean a lot to me. 

I just hope I was a good friend to them too and I wish them all health, love and happiness in this world. 

And thank goodness for Facebook for keeping me sane and well connected to people in my life. There are so many out there who touched my life with a wonderful messages of support that I've not mentioned here  Each one of you and you all know who you are I love you all and I'm ever so grateful to have some truly wonderful souls around me, supporting me.

I'm ever so grateful that you are all part of my life no matter how big or small part that might be 

The last but not the least my dear love I've not excluded you from all of this even though I ve been hurt by you in unimaginable sort of way. I don't hate you. We shared some wonderful memories together. It was hard sailing at the times ... I still from time to time listen to our favourite songs even though I ve asked you not to contact me ever again.

You and me ' penny and the quarters
https://www.youtube.com/watch?v=H8rumyup0Os

'You always hurt the ones you love'
https://www.youtube.com/watch?v=ANbkNhU4VSY


                                                Thank you my friends

January 2014 - New year, new start ...

What a great start to my new year ! My phone has broken down !
I know its totally crazy to worry about the things like my phone when I have this cancer thats attacking my body in a ruthless kind of way. But yes I do worry about my phone. My phone is what keeps me connected to life. I ve got all my contacts there, I ve got texts I need to reply to, Ive got my notes, my appointments, ha i should say my Facebook too. All those things are important to me these days. My phone is my life ! My phone is what keeps me connected to my world. Even at the back of my phone in its see thru case I have my chemo warning card with contact numbers in case I collapse on the street. I was just trying to make it easier for an ambulance crew I guess if anything should happen to me. Its all good providing my phone doesn't get stolen in the process.
So it took me a few days to get a replacement phone and I was happy. Its like I ve got my life back.
. These days when I go by tube (must admit don't go there very often) you see people glued to their phones everywhere around you. Its amazing how times have changed so quickly. Only few years back we didn't have any of this mobile technology and now its out there as a normal part of everyones life. I hope they can hurry a cure for cancer too. Would be great if I could live to see that day and live to be cured. All I ve got now is life of hope. Hope that something good comes my way in all my darkness.

Its been just over a month now since my relationship with Rufus ended. Im still sad and angry at the times. I miss that person next to me very much. We did share some really nice memories together.
There is a lot of hurt and pain that I fell but I have to pick myself up and go on...
I wasn't sure how best to deal with situation really. Mum was with me most of the time, keeping me company and I love her for that very much but there was part of my life that was missing very much.
Often I d look at my cancer reality and put it in prospective but you can't help emotional pain from a broken down relationship. It needs time to heal and I just wanted it to happen fast.

My health situation wasn't the best in those early days in London. I had to miss chemo on several occasions due to my Neutrophils which were often around 0.8 (normal for chemo to have is 1.5 and above). My WBC were also low 1.2 (normal for chemo 3) but my tumour markers were going down. They fell from 102 to 85 which is great,. However they re not reliable. So often they d leave me to recupurrate for a while and than attack hard with chemo again. My prof even decided to reduce it a little as it was not only potentially killing cancer but it was killing me too ! I ve mentioned to my Prof E. that Ive moved closer to the hospital. He smiled and said " So Dani you re a local girl now " ! Well I suppose I was...
Seeing him was always good. It was like seeing a good old friend thats trying to help you through a difficult time. So my advise is if you re not happy with your oncologist or a doctor, don't be afraid to go for a second opinion, or a third even ! I was always honest with my pervious oncologist and told her I was seeing different oncologist for advice and see if treatment is potentially different. What I found is some doctors are more involved than others, some are more gutsy and willing to try new things whilst others play on the side of the caution. Some genuinely care and thats what I felt with my Prof E. and decided to be treated by him. I know not everyone can afford to move but I didn't have a husband, house or kids and I guess I have always taken a risks in my life, some good some bad and I moved to where the care was better for me.

In January when I started feeling better, I started seeing some of my good old friends. My old friend Tesni came with our friend Emma to visit which was really great. We walked a long distance along the river Thames. I was surprised I could do that much walking! Emma complained of severe muscle aches the next day which made me laugh. I guess my friends behave in a normal kind of way around me so they make me feel normal too. They do long walks and my will to live and enjoy little things makes me want to keep up with them. Im happy being around my friends.  However, its difficult explaining some of them my emotional / physical life of cancer. Initially it made me sad but now i was talking about it very openly and with some sort of acceptance. I guess it takes a long time to reach that acceptance. It took me nearly 6 months and I still think at the times that I'm in denial. There are still days when I wake up in the morning and think wow I'm healthy, full of life and I can do anything. But then as soon as I move, my back reminds me of my problems and tiredness sometimes kicks in even by the time I walk to the loo! Then I m sort of back to my grim reality of my life and I search for the things that might make me laugh, silly things like repeats of Frasier on a TV or reading something funny to pick myself up a little. I want to live and laugh now more than ever. Ive decided its best to start monkeying around whenever I can ....

End of 2013 - Its all about moving really

November was pretty much all about moving to my parents while under going chemo and in my good days looking for a new place to live a little bit closer to the hospital.
I ve stayed with my parents initially but travelling to and from chemo through the central London was rather like a hell. I was tired from a long chemo sessions. I d have my bloods done, they would insert a little cannula at  the same time as I had no picc line (I was really glad about that I must admit )
and than I d wait to get my results and if all good move onto chemo. This would take around 4-5 hours waiting around the hospital.
Facing a long traffic jams through central London afterwards was not great. Even though my parents live only about 8 miles from the hospital it would take us around 1 - 1 1/2 hours to get home ! I guess it tends to get busy on the approach to christmas as well ! So I decided to look for somewhere closer to hospital to live.

My chemo was going really well but my platelets would go down really low and I would need to skip occasional treatment. I was once border line transfusion but resting and not doing much helped my bloods pick up a little.
I was still on emotional roller coaster from the end of my relationship and also adopting to London life for the second time now.

In December I finally found a new place to live and my parents helped me move. I really felt sorry for them. I ve moved a lot in the past few years and they were always there to help me with it. I guess they were exhausted from all of this as well but hardly ever complained.
I ll always be so grateful to them.

So in December I started living London life yet again ....

October 2013 - End of my 3 Yr Relationship - Is There a Light at the End of the Tunnel ?

When one bad thing happens it usually comes with another bad thing, and another...Its like a string of bad events. 

My back pain wasn't completely settled but it was so much better though. I was referred for radiotherapy consultation in a hope that it might improve my pain, if nothing else. 

I went to this consultation but towards the end of it I nearly cried. Just when I started picking myself up, some people do know how to bring you down completely again. Probably unintentionally I should say. As thats exactly what I felt like at my radiotherapy consultation. I felt like I was completely written off. 

I could see in my notes there was a lot of those "palliative care only" stamps but I wasn't ready to give up just yet. How could I ? I ve got to at least give it my best shot rather than surrender and say cancer please eat my body from inside out as soon as you can ! I mean I knew my reality and I knew my life was gonna be a short one but I also knew there are drugs being produced out there that are giving people hope, extending their lives, giving them more time with their loved ones...

Now this consultant, radiotherapist I was seeing more or less said there is no point in giving you this sort of treatment as you can't be cured. I felt really angry on the inside and nearly said something that I was gonna regret. So in the last moment managed to compose myself and carry on with consultation. I had a few private consultations by now and each one of those oncologists agreed its for the best to get at least one shot of radiotherapy treatment. However, this consultant is saying no. So we had further discussion and It was decided I was gonna get at least one treatment. Believe it or not just one shot of radio is enough to bring the pain down. 

She did say that radiotherapy will get to my liver as well. That was one of the side effect. 

Surely it can't be that bad since half of my liver was eaten away by cancer and radiotherapy might only additionally help! So I left consultation room feeling so negative and down. I couldnt wait to get home and cry.

Luckily mum has left home to give me and herself a little bit of the break as I was feeling much better by the end of september so she didn't see me cry that day.

My chemo / capecitabine continued to make me feel nauseous but it wasn't too bad. I had another scan and found out that it wasn't working as well as it was supposed to.

This was my report:

So this CT scan report says that chemo is working but not as well as they ve hoped so I was switched to Gemcitabine / Carboplatin (Gemcarbo) Chemotherapy. My cancer was escaping control...

At least my tumour markers were down from 306 to 102 !

The first one wasn't too bad but later on is where all the problems started with this particular chemo.

With this one I would have gemcarbo in my first week, then Gem only in my second week and then have a week break. You d normally have steroids/antisickness in week one,  then anti sickness, no steroids in week two. By mistake I took some steroids prior to gem infusion in week two and caused my bloods to go up a little otherwise they were ready to skip my week two of treatment due to low bloods.

I didn't feel any different apart from slight tiredness, nothing I couldn't cope with.

So the first cycle sort of went well.

October is my birthday month. For my birthday I asked for no presents but my partner remembered I fell in love with a  lamp ( back in july at art in action ) that reminded me of  "tree of light" and he bought it for me as a surprise.

It was such a lovely gesture. I loved my new lamp very much so. However not long after my birthday our relationship ended and this lamp became a reminder of yet another loss in my life.

One day me and my partner sat down to talk about the stuff in our lives, our relationship.This was the time when he told me that he realised he will never have his "happy ending" with me and doesn't know what to do. If he stayed with me he feared he d loose x amount of years and still not have his happy ending. 

I felt very angry, rejected and deeply hurt. I guess I never let him finish whatever he might have wanted to say but asked him to leave. 

My good old friend Lizzie came to see me and we had a good old chat over pizza about my now failed relationship. That was something that we both had in common at the time.  I just needed to vent, tell someone what happened. I felt angry. I wasn't sad or crying but I was angry at how insensitive that was to hear from the person I loved so much. I did appreciate his honesty but there are other ways to end relationship ...  I felt he was just thinking about himself at this point. 

I kind of knew my relationship with Rufus would not survive my Stage IV cancer  journey. I felt that when the going gets tough he will eventually walk away. 

 I stayed put in my flat for another few weeks and asked Prof E. in London to transfer there for my treatment. Ive had so many hurts and pains in my previous place where I lived and I needed a change. Also I was much happier with my Prof E. care in London. He has this amazing ability to deliver a bad news in a good way. You can never leave his consultation room feeling down or sad. For some time now I really wanted him to be my consultant and no one else. I trusted him, he made me feel good after each consult and he is a top doc I would say. He is very passionate about his work and keeps up with research, and I couldn't find anything negative about him and I still can't. I just wanted him to take over my cancer care. So thankfully he did.

The only thing I missed from my last place are my lovely friends. They have been so good in keeping my spirits up and keeping me alive through my cancer journey. 

So at the end of October beginning of November 2013 I was faced with moving flats, moving cities, end of my relationship and possibly loneliness ... I didn't know that many people in London apart from my parents and some of their friends. Most of my friends are elsewhere around the UK.

Moving cities, find a new place to live and ending your relationship is hard for a healthy young person but I was in my late 30s, with terminal cancer, getting thru emotional pain at the end of my relationship ... It hasn't been easy at all...How much more of this can I take ? I kept on asking myself. At the times I wished I was never diagnosed with Stage IV cancer but instead I wished if I had quietly slipped away without knowing what was wrong with me, without knowing my cancer had come back. Late night hours is usually when I d break down and cry and eventually fall asleep...

September 2013 - Vertiboplasty days I can walk again

My oncologist wanted me to at least start one course of Capecitabine chemo before I have my vertiboplasty. She was concerned about my liver and didn't want to wait. I was mostly bed bound for over a month.

So finally in September 2013 I had my vertiboplasty to stabilise my fractured vertebra in my spine.
I must admit I could hardly trust my new spinal doctor (not the one who diagnosed me with cancer but a new one I was referred to ) but I was proved wrong. He was lovely. He was very open about everything and I felt like I could ask him any and as many questions as I liked and he was very patient with me.
So he explained what vertiboplasty was. He told me it would be done under sedation, explained what kind of cement he will use, showed me my scans, etc
I was very happy with him. I was happy as he kept me very involved throughout my whole treatment.

On the day of my surgery on 4th september I was asked to come early to go through essential paperwork. They took me to the theatre and this is when a fear set in. I was so anxious of having someone even touch my back as at this point it was very hypersensitive. Even a lightest touch would trigger the pain. I couldn't even allow anyone to hug me at the times as even a good intentional, loving, gentle hug would cause so much sensitivity and pain around my back. I can barely even try to explain that feeling.

So they ve prepared me for the theatre and gave me intravenous sedative to make me drowsy. However, I didn't feel I was drowsy, I felt I was still pretty much alert ! My surgeon gave me local anaesthetic which made me twitch a lot with my hypersensitive back and proceeded with the cement injections. I must admit I didnt feel a thing, no pain of whatsoever and in the matter of minutes my surgery was over

This is my new scan post surgery:

Cement was in place and my vertebra looked very supported !

Apparently this cement has "anticancer" properties or should I say they think as it warms up before it sets it potentially destroys some of the cancer cells by heat.

It worked really well for me. That same day they ve asked me to walk around my hospital room straight after the surgery. I was no longer to use my back supporting brace. Initially, I felt a little anxious but i was happy I could walk again now ! My back muscles felt very weak, I still can't bend forward as much but at least it was all a bit more stable. I was told I will not be able to carry anything heavy, possibly nothing heavier than a kettle full of water but I was happy. I was happy I could walk again without a brace on my own.

Few days later I had my review consultation... everything was going well. My hypersensitivity had reduced greatly as well. However I was told that this was only temporary solution but with my sort of illness its more of the permanent solution. Ideally I would have the whole of the fractured vertebra replaced by the new one but this was the best they can do for now.
This was yet another reminder of the grim reality of my illness. I wanted to be "fixed" for good, I wanted to be normal again, go for a run, jog around the park but I knew I'd never be able to do any of those things ever again....

This cancer constantly keeps on reminding me of its presence and my limitations.
I wish I have not taken things for granted when I was healthy and did all those crazy things I wanted to do...
However, now I have this alternative reality that Im not entirely happy with but I still hope to enjoy it while I can.


Vertiboplasty links:

http://www.spine-health.com/treatment/back-surgery/vertebroplasty-procedure

You tube animated clip:

https://www.youtube.com/watch?v=T_Ka8uhbL_o

August 2013 - tension, anger, sadness....

August before I commenced my oral chemo therapy treatment (capecitabine) there was a lot of tension around my flat. My mum more or less moved in with me to help me out as I could hardly do anything with my severely compromised back. Rufus would come and visit almost each evening and than retreat back to his flat afterwards.
There was this anxious wait between my new diagnosis and start of my chemo. We all wanted things to happen soon! We didn't want to wait, as in a couple of weeks cancer will spread no doubt and will be a little bit bigger than it was at my scans earlier in july

Mum was desperately looking for alternative treatments online, Garson therapy, Alkaline diet, sodium bicarbonate treatment, etc etc. She was told about some herbal remedies that claim to boost immune system and potentially "cure my stage iv".  She even ordered it thru a friend.
 I was understandably reluctant to try it. We would than argue a little, cry a little, hug and than go back to our "normal". My mother was willing to go to any lengths to find something that will make me feel better.  When you love someone so much you dont care what you need to do but you ll do absolutely anything to help them, to protect them, heal them and to keep them alive.

Tension grew more each day between my mum and dad and Rufus. One day I think we all got to the breaking point and mum and Rufus had a really big argument. They ve not spoken to each other for a while properly after that. I love them both and I just wanted everyone to be with me and stay united in all of this. I guess my mum was subconciously looking for someone to blame for all of this that has happened to me. She was angry that I had to go thru something like this and she felt helpless at the same time.  She is not a vicious person, she d help anyone but she was now a Tiger trying to protect her cub from the outside world and she felt helpless. She herself was going thru the range of emotions that I can only imagine. This was all happening too soon after diagnosis....later when things started to move with my treatment she got better. However, it took some time for her to reach that point of acceptance.

I guess cancer can sometimes bring the worst in the best of people. Initially our instinct tells us we need to fight, do anything to help heal, we feel angry, sad, helpless and might often look for someone to blame (from doctors, stresses in our life,etc etc..)....We go through the range of emotions in such a short time as dealing with the prospect of death is never easy. Not easy for the people going through the cancer but also not easy for their loved ones either. Of course everyone deals with the situation differently but with us it caused tension, fear, anger and feeling of helplessness.

I remember at my first cancer diagnosis back in 2011 I felt so angry. I wanted to scream and shout out loud but of course I couldn't do that as I lived on the main road and if i did people would probably wonder what was happening to me and if i was being strangled or something..... However, yes I was being strangled by this cancer and I had so much anger in me that I wanted to break everything around me, throw the stuff through the window, and scream but instead I collapsed on the floor in tears and screamed into my big pillow.
Some people might suppress their emotions but I couldn't. .... this time around I just needed to cry and cry some more...

Everyone around me was desperately trying to cure me.....even though we all knew there is no longer a cure for my cancer and we could only hope that with chemo it becomes more stable and doesn't spread further.

It was difficult for me this deal with it all as I now had this growth inside me, this uninvited alien  occupied my body and is refusing to leave. I now had to learn how to live with this uninvited stranger  in my body, this enemy..

All my plans for the rest of the year, all my plans for the rest of my life came to nothing. Its like someone erased everything, erased my future completely. So I was now presented with this endless blank, white canvas with nothing on it. Not even a scribble on it! Where do I go from here?  How do I live my life knowing any moment now I could die.

I endlessly searched internet looking for a long term Stage IV survivors. How do other people cope with it? What happened to them ? How did they die? How long did they live? What did they eat ? Is there a diet that could cure cancer ?
I wanted to have all the answers .... but then slowly I had to let go of it all, not stress about anything and accept I will live in this shared body on hopefully long term lease with my cancer...

Spinal and Liver metastatic cancer awareness ..

Ladies and gentlemen please be aware of the symptoms of cancer spread to the spinal cord and liver. Im no oncologist but I have experienced those on myself and I simply wanted to raise an awareness.
These are some of the signs and symptoms to watch out for (highlighted in Bold are the ones I had !)


Spread to the spinal cord might bring some of those symptoms:

The symptoms of spinal cancer may occur very slowly. Other times, they occur quickly, even over a matter of hours or days. Metastatic spinal tumors, which have spread to the spine from another location in the body, often progress quickly.
Symptoms may begin with numbness or tingling in the arms or legs

Some common signs of spinal tumors may include the following:

• Pain (back and/or neck pain, arm and/or leg pain)
• Muscle weakness or numbness in the arms or legs
• Difficulty walking
• General loss of sensation
• Difficulty with urination (incontinence)
• Change in bowel habits (retention)
• Paralysis to varying degrees
• Spinal deformities
• Pain or difficulty with standing

https://theoncologist.alphamedpress.org/content/4/6/459.full
http://www.cancercenter.com/spinal-cancer/symptoms/






Spread to the Liver might bring some of those symptoms

Swelling of the abdomen can happen in liver cancer for 2 reasons. The liver itself can get bigger from the growing cancer. This can cause swelling over the right side of your abdomen. Or you can have generalised swelling of the abdomen caused by a build up of fluid. This is called ascites. Jaundice means yellowing of the skin and whites of the eyes. It may also make the skin itch. It means that your liver is not working properly or there may be a blockage in the bile duct.

• Loss of appetite over a period of a few weeks
• Being sick
• Feeling full or bloated after eating, even after a small meal
• Itching
• A sudden worsening of health in somebody with known chronic hepatitis or cirrhosis
• A high temperature and sweating

 http://www.cancerresearchuk.org/cancer-help/type/secondary-cancers/secondary-liver-cancer/secondary-liver-cancer

http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Liversecondary/Symptomsdiagnosis/Symptoms.aspx

August 2013 - more tests, more scans ....

So this Stage IV hit me really hard ! I would cry every now and than.
I ve got to keep on going ...

Oncology team had organised a number of tests, scans, biopsy etc etc

I had my full body CT scan which confirmed cancer in my liver, spine, lymph nodes etc
This was my CT scan report:

I had some further blood tests as well which showed my liver surprisingly was not doing too badly (not failing yet) despite of the amount of the cancer that was present in there.

Tumor markers were around 360 to start with. Normal once are up to 25.

I also had liver biopsy to check if my cancer was still the same as sometimes it can change and become for example triple negative or HER 2 +. Mine stayed the same estrog/prog positive and HER2-.  Post treatment I was asked to keep movements to the minimum for the next 24 hours due to risk of bleeding. 

My chemo was being delayed until I got the results of my biopsy.

While I was in the hospital my uncle came to visit over the weekend from Canada. It was lovely to see him but mainly I was happy he was there for my mum. He was there to try to cheer her up in those dark days.

While I was in the hospital I ve asked to see Prof E. in London. He was the only oncologist I really liked. He s got the passion for his work, he loves hearing and keeping up with new treatments and he was the only one I can fully and completely trust. As I couldn't attend this appointment myself due to risk of paralysis should the vertebra break further my good old friend Omar and his sister offered to travel from Birmingham to London and see him on my behalf. They are both in the medical field so they were the perfect people to go on my behalf. I needed Prof E's. opinion. I needed to know what he would do, what treatment he would propose. Ive known him since 2011 and respected his opinion very much so. Treatment at the is point according to him was no different so Ive stayed put for now.

My friends called, texted, emailed, facebooked me to check how I was. At first I couldn't talk to anyone but than slowly started responding to my messages. It was all a little bit overwhelming. 

I was pleasantly surprised how many people cared about me.

After spending 10 days at the hospital I was finally allowed to go home with my spinal brace:

I had to put on this brace each time before I get out of the bed to keep my spine stable. Lying in the bed was ok. 

So this brace became my little companion for the next month until they could do vertiboplasty. This is where they inject the cement in my vertebra to support it and prevent further fracture. 

This was me "police like enforcement" ! A little joke between me and my friend 

July 2013 - The Storm of Cancer

I took a photo on my phone of this picture on the wall of the hospital room I ve stayed in initially, before being transferred to oncology ward. It reminded me of The Storm of Cancer I ve read in one of the books / internet sites...

The Storm Of Cancer 

Before cancer, you’re sailing along in generally fair weather. You’re travelling in one direction. You have maps, navigation aids and provisions. You might even be part of a flotilla – you and some other boats, sailing in the same direction at the same speed. Life is fine, good even.

Then a massive storm hits – cancer.

Your boat is seriously damaged. Maybe parts of it are lost or broken. Your maps and provisions are swept overboard. In the eye of the storm, you lose all sense of direction. Your main terror is that the boat will sink.

Then your cancer care team appear. They are your lifeboat; your rescuers. They attach ropes, patch your boat up and keep it afloat; they come alongside you, and take control of the steering and direction. Slowly, they tow you back to port. Sometimes this journey towards the port is even stormier than the catastrophe itself. But you know you are not alone – you have the lifeboat staff, you make a good team.

As the lifeboat tows your boat back to port you see friends and family on the shore waving and cheering. They are so relieved to have you back.

But then your boat just stops.

You are not quite back in port. You can see the lights, and your happy loved ones. But you’re moored just outside the mouth of the harbour. Then your lifeboat, and its team, goes. They drop the ropes into the water and sail away.

You might think: I can get back to port on my own. You’ve been there before, after all. And you can see it, right there, quite close. But it all feels different now. Your boat is still damaged. You need time for repairs. You need to get a new map and provisions. And you keep looking at the sky – is the storm coming back? You listen constantly, obsessively, to the weather forecast – you hear reports of hurricanes. They may be far away, but you can’t stop yourself from feeling that they are coming for you.

This boat analogy may seem long-winded, but it accurately describes what surviving cancer can feel like – does feel like – for many people.

July, 27 2013 - Day after my stage IV diagnosis

This is me the next day:

Rufus came in the morning to check on me and Ive asked him to take a pic the day after My Stage IV diagnosis. For some reason I wanted to keep the photo diary of my grim cancer journey ever since the first day back in 2011. At this point junior doctor came around and explained I shouldn't be moving around as much as there was a great risk of me causing further fracture of my spine / vertebra and being left paralysed from the waist down. This placed even more fear in me but I had to move around. I couldn't just be lying in a bed, I d go out of my mind ! and plus the risk of blood clots !

My spinal consultant requested for me to have a spinal support brace. So i needed to stay in the hospital until than.

My parents arrived too. I could see that they were crying a lot the night before, they looked very washed out but tried to keep some positivity for my sake. However I could see thru it all. I can only imagine what it must have felt like for my mum hearing that her only child had terminal cancer and will die much earlier than expected. I know we all think we could go out on the street and be run over the car and die... but this was different. This was my fast forward life and it was happening way too fast. I now knew Id die from my breast cancer but what I didn't know and still don't know is how much will I suffer and how much more pain Id have to endure... 

Rufus left to give us some time to talk.

Ive seen my oncologist later on as well. I openly expressed my anger about my late diagnosis, failure to diagnose me sooner when I complained about my problems and requested to know how long Ive got. With some reluctance she told me Id be expected to live anything from 3 weeks up to 2 years. That moment I felt a big lump in my throat but I didn't cry I was just scared and angry at this point. I cried in the late hours at night almost every night and wondered where all those tears came from. 

Sometimes listening my music and falling asleep was calming to me but the thoughts of dying were never too far away. I was going thru the practicalities in my mind over and over again, like what i needed to do, what utilities I needed to sort out, what kind of funeral would I have, how will everyone cope after Im gone, what if I live for a month only will I be able to sort out everything in time, etc, etc...

From July 27th I was facing a long line of tests, scans, treatments.....

July, 26, 2013 - My Stage IV diagnosis

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 

July 2013 - Back pain and morphine injection

Following my over night stay in A&E department for my so called "sciatica" I decided to let the docs guide me. So I would follow their advice and exercise, like they said. I couldn't do exercises they ve asked me to do as my back pain was really bad at the times. So instead I did a lot of walking. I' d put my favourite music on and walk for at least an hour or so a day thru the pain.

In the beginning of July I had started to feel a little sickly and had some stomach pains. I ve blamed it on a cake I had a night before when I was out with two of my friends. I thought maybe it wasn't fresh and it upset my stomach a little. So the next day I stayed in bed wondering if it was the cake or possibly some kind of "virus" I might have picked up from somewhere. I lost my appetite slightly as well and nothing tasted as nice and delicious since than. 

I was by now supposed to go back to work but I couldn't  as things didn't feel right.  I didn't feel safe to treat people. So instead I would busy myself by going to random talks at universities (which by the way can be very interesting and are free as well, some of them at least!), I'd go out meet friends for coffees, also with my work colleagues, I' d go to the theatre and when the weather was good to an open theatre as well with my friends, BBQs, house parties etc. I thought to myself Im not gonna let the pain stop me from enjoying my life and learning new things. I wanted to try and live my life to the fullest, or should I say live and enjoy it as much as I could. However this was all happening thru the pain. But I d put the brave face on, go out with my friends and smile. I was very open about my troubles and they were understanding about my limitations as well.

By this time me and Rufus have decided to give it another try with our relationship and we talked about getting engaged and living together again. I honestly thought we ve learnt a lot by now about ourselves, about each other. I thought if we made a little changes we could make it work this time. After all universe keeps on bringing us together and into each other lives so maybe we should give it a try. So he d stay at my flat every now and than 

Than one night in bed just after midnight as I left my iPad on the side table I had an excruciating pain in my lower back. Rufus was next to me that night. It started all of the sudden. I couldn't find comfortable position this time at all. Even a sight movement would bring yet another wave of excruciating pain. I said to Rufus I needed to go to the hospital again. However after my recent hospital trip he thought it wasn't necessary and it was just a nerve again. Also he had work the next day and had seen it as possible another wasted trip at A&E. 

I said I couldn't bear the pain any longer and I needed to do something. I was already using strong medications / opiates and nothing helped. Thru the tears I said I needed to call on call GMP doctor at least.  So I did. I am still not sure how they ve managed to understand me thru my tears and excruciating pain. I ve given them my address and about an hour later very nice doc came around. He gave me morphine injection and Ive managed to settle down a little. I could hardly move and didn't want to move in case I trigger another wave of pain. On call doctor said something about contacting GMP surgery in the morning but I'm not sure if I got any of that at the time ! Hopefully Rufus will know what to do I thought to myself.

So the next day pain was there but sort of manageable. Rufus didn't go to work as he needed to get medications for me. So he stayed, did a little bit of shopping and cooked that day. 

I found it difficult to get out of bed at all. The thought of walking to the loo and back was terrifying me at the times.  I ve not mention my night of turbulence to my mum as I didn't want her to worry about it. 

Next to my bed I had a magazine that I started reading a few weeks ago and never finished it. I found another breast cancer story in there and I thought it would be too distressful to read so I didn't. However this time as I was almost bed bound for two days I decided to find out what it was all about. 

The story was about a young journalist who had a breast cancer like me. The one with "good prognosis"! After her treatment she returned back to work but started getting "sciatica" pain like me. Later on she was diagnosed with Stage IV cancer. She had written a blog called Written Off about her illness. Sadly she passed away in 2012. As I was reading a magazine story written by her boyfriend  tears were streaming down my face. I was crying as it was a sad story but also I was crying thinking this is me. Im stage IV as well now ! We were going thru the same symptoms. I threw away a magazine on the floor, turned to the other side of my bed and cried. 

Later when I settled down I ve read some of her blog.

Her blog address was in the article. 

http://writtenoff.net

 I didn't immediately tell Rufus about this as I was afraid. I was afraid that if I was diagnosed with stage iv cancer ( terminal, end stage)  that would be it. Our relationship would not survive that kind of cancer journey. 

Few days later I did send him a blog link to his work email. I couldn't keep it to myself. 

I have spoken about those fears with my friend Patrick. He s battling with his own medical problems and I felt he could understand some of those things. I was so lucky that my friends were always just a phone call away and always there to listen to my worries and fears. 

I mean yes I could talk to Rufus about the things as well but I was always afraid of scaring him away. I loved him and I wanted to be with him. If he knew my deepest fears would he still want to be with me. Am I gonna overload him with my medical problems as they keep on constantly happening. So some of the time Id simply want to enjoy my time with him, watch a movie or talk about something lighter in life. 

Earlier on just before this episode of back pain I ve done some research and found brilliant private spinal consultant and I booked myself for consultation to see him. I still needed referral from my GMP and I requested if they could fax it over to him. So my appointment was fast approaching now. It not long, only until 22nd July !

These charts I found really useful as well. Its about a pain pathways and functions of spinal nerves