Monday 22 September 2014

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....

6 comments:

  1. God bless you you are so brave. I lost my mum from ovarian cancer it is so hard to say goodbye. She was looked after very well at the end and did not suffer so be assured your prof will look after you. I will be keeping you all in my prayers Sus x

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  2. Love to you and your family. Your parents must be extremly proud of your strength and courage... My thoughts are with you at this tough time. Much love x Danielle x

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  3. Oh Danielle my thoughts and prayers are with you, your mum and dad. You have inspired a lot of people with telling your story. Your parents should be proud you and the strength you have shown. You should be proud of yourself as well. I am so sorry that the news you got was not what you or anyone of us wanted for you. I wished I didn't live on the other side of the world, but you are always in my prayers.
    Much love to you and your parents
    Karyn
    xo

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  4. Thank you everyone for such a lovely comments. I wouldn't wish this terrible illness upon anyone at at all. Its hard and its very draining emotionally and physically on everyone, especially people that surround you.
    I hope my blog helps others in one way or the other.
    thank you everyone and thank you again for reading. I ll be writing probably until I no longer can do it
    lots of love dani
    xxx

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  5. Hi Dani, I know what you are saying. I have recently just finished treatment for Breast Cancer, so I know what you are saying how draining it can be, not only for you but also for the people who are supporting you through the cancer. And yes, it is something I wouldn't wish on anyone. I heart aches for you and your family. You have fought the good the fight and I know will you continue to fight with every ounce of life you have in you, that’s what someone with cancer does. I don’t know you personally but I am proud of you sharing your story with whoever may come across it. Keep up the good fight Dain. We are WARRIORS and we are NEVER alone!
    I will continue to keep you and your family in my prayers.
    Much Love to you and your parents.
    God Bless
    Karyn
    xo

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  6. Thank you Karyn thats very kind of you
    Lots of love
    Dani xxx

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