Something Ive read in someone's blog .... not sure what to think of it

Women with metastatic breast cancer: feeling alienated during Breast Cancer Awareness Month

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By Joan Oliver Emmer/Parental Guidance 
on October 17, 2012 at 6:01 PM, updated October 17, 2012 at 8:33 PM

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How would you feel if the whole country threw a party, supposedly for you, a party with cupcakes, balloons, inspirational speeches, giveaways and cheer?
But what if the party invitation – probably pink in color - included a tiny footnote saying that, even though the party was for you in name, you would be barred at the door from entering? Because your mere presence at the festivities was a downer?
This is how some women with metastatic or Stage 4 breast cancer feel about October, National Breast Cancer Awareness month. During this month of pink and circumstance, saturated with the message that if we become aware of our risk, get our mammograms religiously and invest in all kinds of pink-themed products, walk, run, chant and stay positive, we will not only survive the beast, but thrive in spite of it. It’s a message of hope and strength (and not incidentally, corporate profits), which satisfies our need to be in control of a frightening disease which affects more than 200,000 American women each year.
Only it’s not true.
Women whose breast cancer has advanced to Stage 4 (there is no Stage 5) have suffered a spread of their breast cancer to another site in their bodies, usually the bones, liver, lungs or brain. Once breast cancer has spread beyond the breast, there is no cure. While some women with Stage 4 breast cancer live for many years past their diagnosis, these women are the exception, not the rule.
Let me say it again – there is no cure for metastatic breast cancer. And the reason this should concern the National Breast Cancer month-“celebrating” public is because “early detection” means almost nothing when you consider the fact that approximately one-third of breast cancer caught at an “early stage” will advance despite having been found “early.” Early detection doesn't assure a good outcome because so many breast cancers are beyond the current curative capabilities of medical science, no matter at what stage they are found, no matter how faithfully a woman keeps her mammogram appointments, no matter how much money is diverted to “awareness.”
So women with Stage IV breast cancer – many of whom were already hyper-aware of breast cancer at the time of their diagnosis, scheduled yearly mammograms, ate healthily, exercised (in the words of one woman on my online breast cancer support group, “did everything right”) feel alienated in the midst of the big “party” celebrating early detection, awareness and hope. They see little recognition of themselves or their needs in the “Pinktober” hoopla. They are dismayed by the party atmosphere that pervades the month, an affront to the reality of the cancer growing in their livers or brains. They are tired of silly messaging that equates “boobies” and “tatas” to the “breast cancer experience” as they undergo painful surgeries, lose their hair to chemotherapy and drag around oxygen tanks. Insulted by large corporations that donate a (usually small) portion of the sale of questionable pink-themed products to the “cause,” but whose bottom lines are the ultimate beneficiaries. Incredulous to hear the message that breast cancer is the “good cancer to have” despite the fact that nearly 40,000 women will die of the disease this year, nearly the same number as succumbed 20 years ago. Enraged when told that maintaining a good attitude will help them to defeat their disease, all the while attending funeral after funeral for their upbeat, optimistic friends.
They want to talk about the more salient issues, like about how only 15% of money donated to certain breast cancer organizations goes to research, a key element in discovering how to prevent or cure the disease that afflicts them. How surgery, radiation, chemotherapy and hormonal treatments are so expensive that in trying to prolong their lives temporarily they may be bankrupting their families permanently. How shocked they were to discover their cancer had advanced, because they had been led to believe that early detection equals a cure. How too many entities (pharmaceutical companies, manufacturers, even some of those running major breast cancer organizations) are profiting from their pain.
I asked the members of my online breast cancer support group what they would like others to know about how they feel about having Stage IV breast cancer during October, the month of “awareness.” Here’s a sampling of their responses:
“Our society likes success stories and happy endings. Why would anyone give us the spotlight?”
“When all of the hoopla occurs every October (I hate it), the entire emphasis is on inferred permanent survival. Those of us at Stage IV know that this will never be for us. While it's true that we have "survived" this year, next year or maybe more, eventually, and likely relatively soon, we will die of our disease.”
“My biggest concern is that all of the awareness is going to backfire. People will start to think breast cancer is curable, mammograms are infallible and breast cancer is no big deal. Well, it’s not curable, mammograms don’t always detect breast cancer and breast cancer is a big deal.”
“People have good intentions when they donate – they just don’t know [the realities of breast cancer].”
“When I was first diagnosed I contacted a local cancer support center and inquired about their support group for newly diagnosed breast cancer patients. I was told not to go to their support group because I (an advanced breast cancer patient) would frighten the other members. OK what else do you have, I asked. We have nothing for you, they replied. So, right from the start I was kicked to the curb by the very people I thought would give me support simply because I am what every early stage woman fears."
“I just wish people would stop asking when I will finish my treatments. I have told most of them so many times I will be in treatment for the rest of my life-there is no finish!!”
“And it seems that the greatly touted "early detection" is simply not an indicator that metastatic disease will be avoided. I wonder if others knew these facts, then more interest, effort and a larger amount of funding would be directed toward a cure rather than "awareness."
Breast cancer is not pretty. It’s not pink, it’s not cute, it’s not a cupcake, a ribbon, a “ta ta” or a marketing opportunity. It’s unpredictable, stealthy and too often deadly. The realities and needs of women who are living with advanced breast cancer must be recognized not only during October, but all year, despite our fear, because only by acknowledging what we fear will we get to the bottom of this awful disease.
Joan Oliver Emmer blogs at Body of Work.

Beautiful Poem

“She was a free bird one minute: queen of the world and laughing.
The next minute she would be in tears like a porcelain angel, about
to teeter, fall and break. She never cried because she was afraid that
 something 'would' happen; she would cry because she feared
 something that could render the world more beautiful, 'would not' happen.”
― Roman Payne, The Wanderess

Thank you my dear friend Susan for sending  me this beautiful poem
Xxx

Not Feeling Great ...

I finally got my new wheels !

I wasnt excited at all when they ve delivered it. The reality of whats happening to me is drowning me way too fast. I know if i want to see a little bit of the outside world I d have to use this chair whether I like it or not and I really don't like it !  The guy came around explained how to use it and left. I was reluctant to sit into my new chair but I had to try it.  The nurse came to visit and I mentioned I was happy to have my new chair but it would be good to have oxygen cylinder space. She said she ll inquire into it and will try to provide me with electric chair so its easier for my parents too.

Also I bought this little gadget to check my oxygen saturation levels

Its a great little thing to have. However in my situation it keeps on telling me that I can't really live without oxygen !

The same night, yesterday night I was so excited to talk to my friend Silvi in Germany. We ve not seen each other for a while but do talk over the phone regularly. I was so happy to talk to her and I'm really looking forward to seeing her. She s coming at the end of october, fingers crossed I m still alive to see her.
While talking to her I felt incredibly sickly... I said silvi Im gonna have to go and rushed to the bathroom. I needed to vomit so much but nothing was coming out.
The next few hours I spent on the bathroom floor and when I finally got to my bed I desperately needed to vomit. I felt so sick and in pain, my head was hurting so much, my liver felt like its gone into spasm, I felt weak and trembling. Mum was quick and got me a vomiting bag.
Few minutes later Ive tried to get myself again to the loo to vomit some more.

My mum dad and our family friend Amara ( the psychologist who is very kind to leave her work and spend time with us when we need her the most. she and her whole family are the most generous people Ive ever seen) were all there to see an awful and not very pleasant situation.

So I was on the bathroom floor and couldn't get up. I was so worn out and exhausted physically. My dad kindly picked me up and helped me back to my bed. As he was doing that I had a little tear in my eye. I couldn't ever cry properly as I was so exhausted. I thought to myself, no parent should go thru what my parents are going thru.
This is such a difficult situation to be in, to see your child disintegrate slowly, loose their independence at the best age of their life and to be on the bathroom floor unable to get up as cancer is starting to slowly take its toll. There were moments last night when I honestly thought Id die and probably would not see another day. I felt dizzy and in terrible under the rib pain but mostly my head was hurting so much. .. is this what dying feels like I kept on thinking to myself.
As my dad said when you re healthy its hard to imagine what it must be like for an ill person. Its almost impossible to put yourself in their situation unless something happens to you too
I really agree with him on this

Amara stayed with us until I settled and went to bed. I ll be ever so grateful to her for being there for me and my parents. She even missed her holiday as she wanted to spend the time supporting us while I was at the hospital and at home now

My little dog Freddie spent to whole night watching over me as well

I found him by my bed this morning...

My Incredibly Caring Doctors

While I was in the hospital I had some of the most wonderful, supporting, loving emails from my friends and family. One that really got me to the tears was from my clinical trial lady doc. She's always been so supportive and caring. She made me feel like a human being.  She is an excellent clinician with abundance of the knowledge but more than anything she showed a lot of kindness, human compassion and support at the times when I was feeling down and  at my worst. She s been encouraging me to go on and reassuring me while I was in the hospital. She replied to at least 30 emails I ve sent her without the fail ! Saying thank you is never gonna be enough....
Here is something I picked out of her latest email that she kindly allowed me to share with everyone in my blog. This I find to be incredibly true ....

Dear Dani,

I am sorry to hear this and that you have to go through this pain in your life. I have a profound respect for you and for the other people who are carrying so much, and the only thing I can do here is to offer my help and my support as long and as much as I can, hoping this can help a little. But unfortunately it does not. I need to have my believes about life and death and I do believe that there is always a better place and situation waiting for us after we ``go`` and I do believe we don`t actually go, just our body does.. 

I was walking the other day thinking about  the loved people (patients and not) I have seen to go in all of these years and I was thinking: if I can get a flower now as a confirmation that there  is an after life and that  they are now happy and have understood the meaning of all the pain they went through during their life I would be the happiest person in the universe.

Don`t ask how, but after few minuts a flower came to me out of the blue.

There are things we cannot explain scientifically and being a doctor or a scientist does not mean we don`t have to believe and keep our hopes..actually nobody can explain God as well..But we do need to have faith and believe that whatever happens to us and to our loved ones is for a reason that perhaps we don`t understand but we will definitely do one day.

You are not alone, and I am here as always, if you need..

xxxxxx

Dear, 

I was going trough your blog and I was reading..how you have been all of this time, in physically and emotionally pain and the thoughts that crossed your mind. I am sorry, so sorry you had to go though this.

We come here with something to experience, something different for everybody that our souls need at this specific time. I asked so many questions myself trying to get an answer, which I got at the end. I cannot tell you how, but you have to trust me:you will be fine. Only here we are in pain and we experience these kind of terrible emotions starting with fear, the worse one! It is only on this planet, dimension that we are allowed to feel. And our soul wants to know what pain is, what desperation is, what fear is. Is the only way and the only place. And in the mean time we grow and understand and evolve. Yes, going through hell we go to heaven. But please now stop being scared, I promise you that you are going to be happy as never in your life. I believe that the true life is not here, is where we come from, and were we go back after this short or long experience on earth. This is just temporary and we do believe this is the real life. But it is not. You don't remember what is waiting for you, what wonderful happiness and joy is just waiting for you.

It is true, we are sorry for our loved ones who stay here  in pain for the loss they will experience but this is something they have to go through as well. 

All my love and respect is with you,

Always 

xxxxxx


...and than a few days later I received this text message from my Prof as well .....

All I can say, no matter what happens to me in the near future, is that Im truly grateful to have such a wonderful doctors surround me. Doctors who are passionate about their work and truly care about me. I couldnt have asked for a better team to look after me but of course they can't perform miracles (I wish they could ).

This is me with my new short haircut. Tonight I felt unwell, and very sickly but thank goodness for oramorph ! This cancer feels like a one endless, painful, slow death ...but despite of all the pain I still want to live, live for at least a little longer and maybe hope for some miracle to come my way ....

Preparations For End of the Life From Hospital Bed

The next day after my devastating news was not any easier on me nor my parents. Its a lot to take in and it seems like each time we saw each other we d have a little cry and than carry on with some kind of "constructive" conversation. I ve tried so hard to keep the brave face on and compose myself not to cry but its impossible.
I have met a numerous people from different teams the next day and each one of them has been great in leading me thru what follows the next. I know sometimes we all criticise  NHS (national health system)  and we get unhappy with it as we all have our ideals of how they should do their job but their end of the life care is just amazing.  I can't praise enough the team who had led me thru the days following my dreadful news to days before I got discharged from the hospital


So here is what happened the following day...

In the morning I was seen by lovely Em who was very compassionate and explained a little bit about the role of the palliative care team who from now on will be involved in my care.
I mentioned my concerns and worries. Everyone worries about different things and priorities are not the same.
One of my main worries I mentioned was first to provide my parents with some sort of psychological support. I wanted them to start that now while I'm still alive and continue after my death. Both of my parents understandably were very reluctant to say yes but with a little bit of persuasion they both agreed to it.
My next priority was to sort out my funeral so my parents don't have to worry about organising it while grieving. I don't need anything fancy. Just a simple funeral with a lots of flowers will do for me. I love flowers esspecially white and yellow. Yellow roses are my favourite but little bit of a colour is nice too.
I mentioned to my mum I d love to be cremated. I think this would be easier as my mum wouldn't have to spend hours sitting next to my grave, cleaning it, visiting me etc. Id much rather have my ashes spread over the cliffs of Boscome and into the sea. So at least when she comes to visit she can go for a nice walk along the coast and get some fresh air.

I didn't expect my health to become so bad so quickly and I thought I d have a time to do unfinished plans slowly. This all happened all of the sudden and it hit us all like an awful tornado.

While talking to Em I couldn't stop crying. Even if i tried I just couldn't stop. I guess I expected her to say to me that this was all just a bad dream and I ll wake up soon. The words can't explain the feelings I ve been going thru. I thought it would have been easier than this to accept the fact that there is no treatment available to me any longer. I guess I always lived in hope that there might be something around the corner waiting for me, some miracle cure that one day will wipe all my cancer away and I ll be able to continue life as normal. Id be able to enjoy life little things, like go to my local park, sit on the blanket under the tree and watch the clouds go by. Id be able to read books, go to museums, galleries, theatre, enjoy my cinema trips and eat ice-cream. I wasn't asking much from life... just simple things that I can enjoy on my own and with my dear family and friends.
I thought Id have dinner parties, invite people over and just laugh so much.... Oh how it all looks so different now.... I think Im still in a denial that I'm dying, even though I know I am. There are times where Id try to imagine it all. How my liver will eventually stop working, I ll be comatose with even more morphine, Id sleep more and eventually Id die. I just hope its painless
While I was in Oxford back in July 2013 (when I got diagnosed with fractured vertebra/back and my terminal cancer) I had a chance to experience it all first hand as to say. I was always one of those fidgety patients and if I feel even slightly better I cant really keep still. I have to walk around, talk to people, etc. While doing my short walks with my fractured vertebra ( I wasn't even aware that I was meant to keep still in the bed !) I ve been going pass the room where there was this 20 something year old girl. She had her own room. Each time Ive gone passed it she was asleep and almost hanging of the side of the bed. Her family came to visit every day but she was almost unresponsive. Not sure if she was aware that they were there. One day I saw her family crying outside her room and her father was saying to the nurse thru tears and I quote " I knew this would happened, I knew she was gonna die, Ive tried to be prepared but you can never be prepared for this kind of thing". The moment I heard that I hurried back to my bed and Ive cried so much thinking this is something my poor parents will have to go thru. Emotional pain is one of the hardest pains you can ever have and I think I'm starting to know that ever so well.

So after my nurse Em, a lovely chap called Al showed up to talk about my worries and the way he can help. He was so lovely to talk to but than again his sympathy got to me and as usual I burst out crying. We talked about the things he can organise for me and he was ever so helpful.

Following this yet another nurse  came to check what equipment I need at home, like bed, chairs, oxygen, wheelchair, various bathroom aids, commode etc etc ... All this was just head spinning and happening too fast. You ve just been told the news that you might not live longer than few weeks maybe a month and now you ve got to immediately think of yourself as being a total invalid and dependant on others.
I told her I needed to slow down as this was too much for me. For now I said I just want the bed that I can get in and out of and oxygen of course as Im reliant on it at the moment. She suggested we chuck in a wheelchair too so when I feel better I can go out of the flat and she took a measurements for it.
Im trying to get ready to die but I m still struggling with loosing my independence. I struggling with the fact that i soon might not be able to have my morning showers and will need help washing, or will need the help to go the the loo. All this feel so surreal ...
I asked if it comes to me feeling really bad than I d like to go to the hospice to make it easier on everyone. I d rather spend my last few days talking, hugging, even crying with my mum and dad rather than her to worry about my morning wash, helping me turn around  in the bed etc.

Before I got discharged I had to have a hospital like bed in my flat to make it more comfortable for me to get in and out of and of course my oxygen.  They asked if I wanted bed at my parents place or my rented place. I didn't want it at my parents place. I thought when I die I don't want them to walk into their living room and think thats where Dani died. I suppose I want to protect them from those horrible emotions and memories. I want their place to be theirs with not so many reminders of me and my last days. I want them to remember me having good days there instead

When I came out of the hospital it was lovely being home.However, my new bed suddenly made it feel almost like my little hospital. I chose for my bed to be placed in the living room so I can feel connected to everyone around me.

My hospital bed at home with constant oxygen supply machine

My oxygen cylinders

So when I got out of the hospital I felt very tired and needed my sleep without constant disturbance by nurses to measure my bp, give me meds etc etc.

While I was at the hospitals I had a lots of lovely friends visiting which made my days go faster and I didn't have a time to think about lots of other things. Ive cried and laughed with them but mostly I felt so close to them, more than ever. I had a really good cry with my friend Deesha and told her how much I respected her and how much I loved her as a friend. I guess what Im trying to do is tell everyone is that I love them before its too late and I can no longer say anything at all. 

The day after I had a number of district nurses come and check up on me. One said she was looking forward to seeing me. I said it must be because Im much younger than most other people you see dying to which she replied yes. Ha i seem to be some kind of novelty for carers around me...

Also my GMP came to see me to see how I am. We did red and white paper DNR official form ( do not resuscitate). Not sure if I d want to be alive if Im no longer aware of my surroundings. 

For now I ll keep on fighting to the end even though Im falling apart....

My big swollen belly and bruises from my anticlotting injections. 

Im not a pretty sight at the moment :(

The Most Difficult Conversation To Have

This morning was one one the most difficult conversations I had to have starting form my consultant to my family.
As you might know rather severe breathlessness brought me back to A&E and than my local hospital. At the A&E they ve tried gently to prepare me for the news to come, news about my ever cheating death that I so desperately tried to avoid. I suppose even after talk with various doctors at st Thomas London hospital ( the one with a beautiful view of Big Ben) I stilled lived in a denial and hope that my lovely prof can perform ever so needed miracle and my parents believed in the  same too. After all even when everything, every little pathway has been exhausted you still want to believe there is something else. You simply can't expect for it to end so fast and abruptly.
So  Monday morning and meeting with my prof finally arrived. Mum came and brought me some clothes to wear other than my PJs. No matter how much I like my comfy PJs I still wanted to "look good" and respectful for this appointment.
These days I'm rather reliant on my oxygen supply and can't go anywhere without it as I get very breathless. My liver has more than doubled in size and it's now pressing against my lungs especially on the right side making it so uncomfortable for me.
So I made myself look decent after a long shower and breakfast, grabbed my portable oxygen cylinder ( well actually mum carried it for me as it's rather heavy for my back) and we went downstairs for my appointment. Alison my lovely nurse had a little go at me for coming down to the clinic as I didn't have to do that, usually they d come up and see me on the ward she said. I simply said with the grace that I wanted to come for this appointment. She totally understood and kindly let prof know that I was waiting. Shortly after that prof called me in. Firstly he greeted me and my mum and had a go for me for coming down to the clinic and kindly explained he wanted to see me and he was coming to the ward to do so. Secondly he was rather surprised to see me walking around.
He explained that my scans don't look good at all and there is a rather a lot of cancer in my liver and mentioned why I felt breathless ( liver being so huge and pushing up my chest).
He than looked at my mum and explained what a wonderful remarkable young lady I was and that he had  a great pleasure meeting me back in 2011. He said he s not yet met someone so remarkable, full of grace and dignity and who achieved so much in life.
News are not great he said , gave me a big bear hug which I appreciated so much than he sat very close to me, looked into my eyes and explained what was happening. He knew all along that I wanted nothing more than total honesty from him and remembered I once said I wanted him to tell me when I'm approaching end of the life. With a ouch even thought he didn't and couldn't predict how long someone can live gave me few weeks to max few months

Eribulin chemo option is there for me but he fears my body is too weak to take it. He  said I'd need at least 2 cycles. ( 4 infusions) to see if it works but he doesn't think my such a weak body can take it. My basic bloods are down ( eg haemoglobin  normal range is 120 minimum   for women mine is 89). If it drops to 80 I'm more likely to need transfusion.  He said he was frankly surprised I walked to my appointment. He expected me to be totally bed bound. My body to him is still surprisingly strong and it surpassed his expectations. It's probably because you re very young and were rather fit from all the walking you ve been doing he said

I've asked what are the stages of dying from now on. With a very sad look on his face he said my liver function will drop , I ll feel more tired, sleepy and eventually I ll drop into a big sleep and with a help of medications like morphine not wake up one day.

On the other hand he thinks chemo would be of little help if any  and there is a chance I might die even from the first infusion and suffering from terrible side effects of chemo regimen.
He looked at  my mum and asked her if she was ok and understood all of it  as she seemed in the state of the shock. She kindly responded that she understood what he said but finds it difficult to listen.  At this point I was a strong young lady that he described earlier, very open and full of grace and dignity. I thanked him for all the care, love and treatment he provided me with and we got up to leave. He hugged me tightly again,. It was not an ordinary hug , it was a hug coming from someone who truly cared, someone who put himself in the same position and asked what would he do if it's his loved one ? At this point I let a little tear drop down my face, mum did the same, we thanked lovely Alison for being present and left. On a way out prof mentioned if I want to change my mind and try chemo I could  despite of his opinion on it. He also encouraged me to stay up in the ward for as long as I needed . I needed to feel fairy comfortable before  going home.
We came back to the ward after hearing a news. I felt such a great need to hug my mum really tightly and keep her close to me. We sat on my hospital bed and burst out crying like no one was watching. I didn't feel letting go of her and I felt her hurt and pain . She for the first time was no longer this strong person encouraging me to go on but she  looked helpless in all of this,. Emotionally injured is an understatement..we knew this was coming but finally accepting it seemed harder than ever. That unimaginable pain is just so damn hard to explain. Soon  after we started talking about the little practicalities of life, list of the things to cancel , list of the friends to inform when I do pass away and funeral arrangements. I told my mum it was hard and scary for me thinking about death but I couldn't imagine her pain of loosing her only child , her only light in her life. I made her promise me that she d look after self after my passing and that she ll see a councillor or psychiatrist to help her thru this.
We informed my uncle and aunty in Canada of my sad news ( I know it's very impersonal doing it thru Facebook but we couldn't face to do it any other way. They took news very hard. I felt my uncle could not even bring  himself to reply because of the hurt and pain so my aunty coordinated conversation with a view to Skype later on.  Mum told her best friend about the news and she immediately came over to see us. I felt a certain ease as she is qualified psychologist and might be able to give her all needed guidance at the moment. Than we had a challenging problem of talking to my dad. Mum shared info over the phone as she couldn't stop crying. I think my dad burst into tears and dropped his phone. It took us a while to reconnect with him again. We thought he might have passed out or something. Finally 15 mins later he called and said was coming over. When he came he couldn't even say hello, he just sat down held my hand and cried so much. I've never seen him like this. I could tell that he no longer was in a denial. It was hard seeing my mum fall apart but when I saw dad that really made me so hurt, vulnerable, and stripped of all the hard casing that I've carried to protect myself  and pretend I was strong. So 3 of us and my mums friend cried so much. It was difficult for my mums friend to observe such a close and difficult emotions but I was glad she was there today.
We cried a lot , I've spoken to my dad alone about my passing, my fears, his fears etc. we were very open as a family and talked about everyone and anything freely and openly ... this was no different only 100 times harder to talk about....

Time to Start Packing Up !

Yet another devastating blow and punch in the stomach and this time it hurts so much that words can no longer describe it. My head is spinning from all the info I just received from doctors. Well apparently my liver has more than doubled in size and was pressing up on my lungs making it difficult to breathe for me.  At this point they are unsure if I ll be able to have any active treatment apart from pain relief  with morphine and lots of antisickness drugs.
I ve pressed doctor to tell me how long I've got as there are few things I'd like to arrange before I die including my funeral.
However, no one can tell me how long I've got but one of the oncology consultant I've seen mentioned weeks and if I'm lucky  few months. Tone of my doctors voice made me realise how serious situation is. I felt certain coldness in my body rushing thru my veins, my arteries but yet I'm sweating profusely. I've been sweating a lot more in general but this this it's that cold sweat filled with fear.  My liver function is not great but bilirubin  is holding at 4 at the moment so I'm not getting jaundice yet.
At the moment I feel like talking to someone close to me  but I can't. When doctors were here few moments earlier I've tried to see my fast approaching death as liberating so I wouldn't cry in front of them but instead would ask them as many questions as I can. I've asked them how am I gonna die? Is my liver gonna go into failure, will I get a massive bleed internally, will it hurt, etc etc but they cant answer me that. they  left I couldn't wait to have a  massive cry. I feel like crying so much and not stopping. I'm angry and I so much want to snap out of this situation and start running in frustration and crying at the end . I'm in the middle of the ward with open curtains and I don't give a damn who s seeing me cry.
I just wish I had a different news , I wish someone can tell me  you ll be well and you ll live until next year at least. I so despatetely want to live so much . I don't want to let go of this life just yet but unfortunately my body is letting me down . I knew this would happen sooner or later but didn't think it was gonna be this soon. But I should appreciate and treasure each day I live up until my fast approaching death....

And Back to A&E Yet Again !

So I didn't get admited to hospital as planned as there was a shortage of beds at my local hospital and instead it was decided that I was to be treated as an outpatient . So this morning I had CT scan and some steroids to help my belly swelling. However, my situation got worse by the afternoon...I felt very short of breath  and my resting heart rate was very high above 100 beats per minute. So I was back to A&E yet again under morphine for my overstreched belly pain and very angry that I don't seem to have a break from my fucking illness ( pardon for swearing but I'm extremely angry with my stupid body and illness !). This illness is turning me into one very unpleasant and very angry person that I can't even recognise myself any longer.
Why can't my body let me enjoy life a little bit longer. I m aware how all this will end but why can't I enjoy it all just for a little longer !
My poor mum must be really exhausted with endless hospital stays, luckily her best friend rushed to hospital for a little bit of moral support. I'm so glad she was there for her as after all she is psychologist and who best to support her at this difficult time .....

Back to the Hospital Yet Again !

Today I feel very angry with my body again as it keeps letting me down ! How strong is my cancer that nothing would even touch it !

I had such a wonderful time seeing some of my good old friends. From trying fun veggy hats with Susan on saturday to a lovely meal cooked by my dear friend Jose for 4 of us on sunday. By the way chicken was delicious Jose, I really enjoyed it and Im sure my friends would agree as well. Also thank you for my lovely gifts Jose, Kate, Mayank, and Paula. I appreciate it very much but Id rather just have you all come over for just a lovely cup of tea and a chat. 

This was a really nice surprise. Just what I need at the moment. Something I don't have to think about but will keep me busy for hours 

This morning I was supposed to have "water accumulation" drained from my belly. So my mum came  along with me to keep me company. Nurse who once placed the picc line (blood port) on my left arm was doing water drainage as well. She is a lovely lady from wales, only pregnant now and with a big belly. So we laughed a bit and compared the size of our bellies. Soon after our little catch up chat she brought "the beast" - an ultrasound machine 

After setting it all up she placed a little gel on ultrasound machine handle and scanned my stomach. We could both see a little bit of the water accumulation on my left side, however right size showed nothing more then huge liver with a lot of cancer in it. She triple checked everything and decided that there was not too much water that can be drained and decided to abandon the procedure. 

I requested if I could have a chat with prof's registrar about my further treatment plan as my belly is getting bigger and is giving me a lot of unpleasant symptoms like the feeling I will pop / explode like a bomb and that I can't literarily breathe by the evening. So following a few bleeps, my lovely lady registrar managed to squeeze me in to her very busy clinic for a chat. 

She said I ll have to be admitted, have staging scans done (see what cancer is doing), start steroids and chemo. My head started to spin with all this info. So I ve been taken off the trial I asked and she said yes as we need to get liver swelling down. It was like a stubbing with a sharp knife in the stomach ! I nearly burst out crying in her office but managed to stop myself. This trial was my only hope of possibly resetting my immune system and giving me slightly better quality of life with possible reduction of the cancer. Instead I now have to undergo horrific chemo side effects, suppress my immune system even further, worry about bugs, viruses, bacterias etc that could get me hospitalised again, beat and destroy my body even further and plus loose my hair ! and for what ? For a possible slight chance that my life will be extended by days, months ??? I really feel angry with my body and with myself. Ive asked about other options than chemo ... and hormonal treatment would take 3 months to work if it works so thats not the most reasonable option in my case ... anyway I feel like I can't surrounded just yet. I ve got to at least try ....

I knew what she was saying was reasonable and yes I knew steroids can only help me in this situation  but I wanted so much for my clinical trial drug to work. I was desperate for it to work but my body let me down yet again and I felt extremely angry with it.

Soon after that I ve spoken to my lovely clinical trial lady and she agreed with the treatment. Yes it was priority now to get my swelling and pain under control. She agreed with everything apart from chemo but if prof approved it then thats fine she said. I thanked her for time to talk to me and we decided its best if she s kept in the loop as well with my current treatments. 

Mum cried a bit after hearing all the news and I nearly did too ! Dad came over and after hearing news he had tears in his eyes but stopped himself from falling apart in from of us. Soon our dog Freddie became distraction to us all. I have to keep strong. I ve got to be strong for my poor parents 

So now Im home waiting for the bed to become available for yet another lengthy stay in the hospital 

......

The pic from my recent hospital stay just few days back 

Back To Normality With Big Belly

I ve managed to stay 6 days in the hospital. I was on IV antibiotics. They on the other hand caused my diarrhoea. Ceph antibiotic is known for this so I had to stay in isolation room for my last 2 days as not to transfer potential stomach bugs to other patients which of course would not be nice. My results turned negative for bacteria at the end. However, initially it was nice having a room to myself as I can play music loud rather than listen to it via my headphones, I can talk on my mobile without disturbing others and have visitors up until 10 pm which again was great but I missed as I call it "people watching" in the ward. Its more fun on the ward,. You get to talk to patients and nurses etc etc while in isolation everyone was fearful going in the room as they thought they might "catch" something.
My lovely friend Becky came to see me and brought me some wonderful cakes. My good old friend Sundip came and we had a good old catch up which was really great, my friend Omar brought me some wonderful presents including this cute little thing that i had to show you

Isn't it cute - this little supermarket basket :-]

Than last but not least my friend Deesha came to see me and we had a good and meaningful discussion about life and what life might be all about, which was really amazing. 

Im glad I had my lovely friends who came to visit when I started feeling better as my time in the hospital just passed so quickly. They kept me sane as well. Nights were difficult as my stomach got bigger { I felt like a 9 months pregnant woman!} and became very uncomfortable. My level of irritation and frustration increased in the last few days of my hospital stay. I felt so angry with myself and for having to deal with this stupid illness. I just thought to myself how much can one person take! This is too much for me to deal with and is this ever gonna stop. Will I ever be able to return to some normality and have a little break from cancer. Will it ever go in remission ? I think I knew an answer to that question for some time now but I'm trying to be ignorant. I look on the ward people's suffering and I feel sorry for them. I feel sorry for me too. Why do I have to endure this? why can't I have a normal care free life? I keep on going to the past and asking myself if I ve done something really bad in my life to deserve this illness thats following me all the time and will eventually kill me. 

Funny enough I never ask why me like most people do as I think well shit happens in life and i seem to be one of those "lucky ones".

Im fearful of what will happened next ? is this a flare up effect they were talking about with this immunotherapy? Is all this supposed to get worse before it gets better and will it ever get better in my case ? Or am I failing and slowly disintegrating. Starting with big belly, hepatitis, liver failure and death...all I know is that I don't want to die yet. I still have plenty of things to sort out, I still have my funeral to plan, events Id like to attend and enjoy life for a little long.  I feel like I didn't know how to treasure life when I was healthy but now being so close to death Ive learnt  how to enjoy it for what it is and what it has to offer and I appreciate all the wonderful things and people around me.

Anyway, my diagnosis was swollen liver, spleen and ascites {water accumulation in the tummy}. 

No one told me how painful this water accumulation can really be!

 I m still on very strong pain killers, oxicodone {sort of like synthetic morphine} and antibiotics in hope that all of this settles down soon. 

This is my ultrasound report which doesn't seem to be that different from my old one really:

My new ultrasound report 

My old ultrasound report 

So Im finally out of the hospital but my big belly seems bigger than ever!

First day back home felt great. I was back to my comfy bed, familiar surrounding, seen my lovely little dog Freddie and have my own home comforts around me which is fantastic, but I felt really weak. I managed to push myself to go for a little walk with my mum and buy bigger size t-shirt so Ive got something to wear as nothing seems to fit this big belly now ! Those are the pics of my very swollen, liquid filled belly and no Im not pregnant !

It feels hard, distended and very swollen

Little blue spots on my belly are injections site.

I had to have anti clotting injections each day

Today my lovely friend Susan came to visit and we had a fantastic day vegetating. We had so much fun trying our lovely veggy hats :-]

So tonight Im really struggling with this extra water and huge belly. Im contemplating whether to have a glass of water or not. If I do Im more likely to struggle with pain due to further extension of my belly, breathlessness { as my belly is pressing against my diaphragm/ lungs} and hot flushes. 

It all comes at once, right?

Despite of all of this Im still trying to carry on with my life while I still can, even thru the pain and symptoms as I know there will come a day when I won't be able to do those lovely and fun things in life. I don't know when that day will come but for now Im very grateful each time I leave hospital walking home. 

.....More Pain

So I was talking about the pain I've been having the other night and never finished the story really. Well , I can tell you now that's because I was in so much pain, and had a really rough night.
Pain was not settling down and they kept increasing my morphine. However, you should never have morphine on empty stomach ! I could not eat and could only drink water and that's about it. In the middle of night I was desperate for a loo but couldn't move. My lovely nurse knew I couldn't move, never mind get up to use commode ( one of those portable loos) so she brought this bed bowl. She gently wiggled me thru my pain onto it. I felt like a motionless body plonked on this cardboard made up portable loo and left me to do my things. So I was lying on it and half  hour later she comes back and I felt like I ve wasted her time. It's like you have to pee under pressure and in this awkward position. If by any chance somone told you it was easy, I ll tell you now they are lying to you ! So we decided to abandon this plan and go to plan B instead. She ll bring commode but before she does that she offered more morphine to me as she could see how much pain movements were causing me. Morphine was an oral liquid morphine which of course gets absorbed by the body much quicker than tablets so we didn't have to wait for long for it to kick in. She helped me up slowly thru some pain and as soon as I managed to get to it I felt at ease that I ve been to the loo. It's like when you re desperate to use a loo and you can't as you re stuck on a motorway ! I tell you it felt great
As she was helping me get off I felt extremely dizzy, like everything was spinning around me at the fast rate and I felt very sickly. All I managed to say was " I'm gonna be really sick" she ran to get me a vomiting bowl. My vomit was brewing and when she got me a sick bowl I started vomiting straight away. It's was just liquid and nothing else. As soon as she left room I vomited again in another bowl from a selection of four she brought for me. I knew it was all because I've not eaten anything at all and explained this to her. She went and brought me fortisip ( nutritional drink) in a hope that may help. However, this only made situation worse and I was sick again. Poor nurse, having to deal with all that stuff !
Just as I settled for the night, I started running a high temperature again. My liver or shall a say part of it felt like it was on fire ! So they ve got emergency doc to prescribe IV antibiotics to me. Obviously, due to my fever I was hallucinating slightly. There is a wall tv that was just above my head. I was drifting in and out of the sleep I had sort of a partial dreams. I've been dreaming about dying and my friend Tesni was saying to me in a dream, whatever you do don't go towards the white light ( as to say don't die yet) . Of course with fever and everything that was going on it didn't click to me that the "white light" was actually tv screan above my  head and it was on and had some very  bright images !  I finially settled in the early hours of the morning curled up to my vomiting bowl.  In the morning  I noticed tv was on  and started laughing !
So I felt  little bit better the next day but very sleepy !  Next day I ve heard from my trial people. My lovely trial doc reasurrred me and had a long chat with me which I appreciated so much. So I could have all the pain killers but no steroids ( even thought they d probably work the wonder in reducing my liver swelling ) and no warfarin. Of course I want to stay in this trial but it's difficult when you have to decide yourself what's best for you. On one hand you want to pain to go away as my liver was still hurting ( you re also wandering if pain is ever gonna stop without steroids or you die and pain definitely stops!)  and on the other hand if I took steroids, id  be kicked off the trial and my options would be totally limited than ( chemo , maybe one other that I could try and it will more likely kill me  as my body is so knackered ).  Oh how I wish I was choosing t shirt or something instead and couldn't make up my mind which colour to go for ..huh ....how I wish that was happening.

So the the to evening I got transferred to my local hospital and it was like being back home. ! I was seeing familiar faces in familiar surrounding but most importantly I knew my doctors there
One of the nurses couldn't recognise me straight away. With me at the moment they can't do bloods or blood pressure from by right arm due to the risk of lymphodema ( arm swelling ) and they can't do blood pressure from my left arm because of my picc line ( blood port).  so when they were taking blood pressure from my leg she happened to be near by and she shouted " Of course I remember you now".
It's funny what people remember !

My blood results 

Pain, Pain and more Pain

The other day I decided to sod it all, stop living in fear like my good old friend Tesni said and enjoy my time now, not tomorrow, or day after but now as there might not be tomorrow so what than ?. I wanted to feel "  normal" and do what normal people do in a long time. Escaping to Paris, romantic and full of history city  I wouldn't say trip to Paris was my absolute dream but was probably the second one on my little  list of the things to do.  So I booked last minute tickets and went with my mum. I chose things to do very carefully so I wouldn't over exhaust myself . I wanted to be able to go and enjoy myself  somewhere. different and in a way special. I also wanted to create more of the lovely memories with my mum  so she could look back and say that was wonderful and at least for a while my daughter felt and looked normal. I wanted her to  have some wonderful memories  away from a routine of our lives and somewhere entirely new and different.

While I was there I had some pain around my liver, slightly more than usual but ok. Our second day involved boat ride,  very little walking and tour bus. I wanted to see some historical sites but couldn't walk much. So we chose a bus tour.  Listening a bit of history and lovely Le Paris songs was great and very nostalgic. On this lovely bus tour I could feel some warm wind on my face. I d close my eyes for a moment and let my amazing happy things flow thru my head. Music was happy and it made me very happy too. It was truly amazing experience. We laughed a lot aong the way about some silly things.  We shared the same bedroom and would wake up at the early hours of the morning talking about funny things in life. It was truly amazing to see my mum laugh so much. We totally and completely 100% enjoyed it. The morning we were leaving I felt so unwell. I couldn't get out of the bed due to the pain around the liver and I felt like I've not slept for ages, even thought all together we had about 8-9 hrs of sleep. I got slightly worried if id be able to get out of the hotel never mind make it to Eurostar by taxi. I didn't want to say much to mum as I know she d be really worried . So I had couple of painkillers and pushed thru the pain (my usual kind of daily life!) . After 2.20 mins train ride I couldn't be happier to see UK ! Managed to drag myself to dad's car and as soon as we got to my parents place I fell asleep. My pain at this point seem to be better lying down rather than sitting or standing. By the evening I developed temp of 38.5C and had to go to A &E on advice of my clinical trial doctors. I spent most night at A&E until they got bed available. Pain was there definitely and it was constant but I could still move around. I must admit I'm not very good at being bed bound. Than in the afternoon my cancer got all it's weapons out and starting giving me so much pain ! At this point I got to the bed, got myself down and couldn't move any longer. Even a tiny little movement would cause excruciating pain. I had regular  painkillers but that wouldn't even tickle the pain never mind treduce it. Than morphine came around ! I had so much of it but no food as I feel further discomfort and pain when eating.
By 9 pm I was totally bed bound not even able to turn my body even slightly due to the pain. Pain was still there even thru regular morphine increase . With my arms I had limited movements too but no stretching ! So here I was in the familiar ground yet again but this time possibly even worse. My liver function tests apparently came very abnormally high, my liver is so swollen that even a slight movement was making it worse despite of "good guns" morphine and pain killers. My liver is so swollen and inflamed that lying down was excruciating hard. I started to cry and couldn't stop. I don't mean to be tragic or anything but this felt and sounded really bad. I ve lost my movements due to terrible pain. I cried and cried a lot due to the thoughts if this could be it finially, after all the suffering and struggle? I d much much happier if I just dropped dead literary. However, I could see this only as a bed wetting, nurses cleaning me and turning lifeless body around, loosing my freedom to walk, etc etc. I appreciated ability to walk everyday so far and I'm grateful to. god or whatever it is up there for keeping me alive and helping thru the number of hurdles I had so far.
I've cried a lot that my cheeks and eyes were so red. Nurses kept on poping in and out to check on me , but their sympathy made me cry even more. At the times like these social media, Facebook, texts, calls, etc tend to help but not tonight ! Nothing was helping, probably due to variety of things that kept on creeping up thru my head. My friends are great at reassuring me and helping me get thru yet another hurdle. I can just hope I was a good friends to everyone as that's one thing that would make me amazingly happy


More on my disturbing night tomorrow ....