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 :(