Friday, 3 October 2014

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

Joan Oliver Emmer/Parental GuidanceBy Joan Oliver Emmer/Parental Guidance 
on October 17, 2012 at 6:01 PM, updated October 17, 2012 at 8:33 PM
Lynn Friedman.jpg
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.

Thursday, 2 October 2014

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

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...

Tuesday, 30 September 2014

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..



I was going trough your blog and I was 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,

...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 ....

Tuesday, 23 September 2014

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 :(