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  • A message to carers

    Reply

    Khandarohi

    4 replies

    Edited by Khandarohi 1 year ago

    This thread is messages from people with terminal cancer explaining what their carers did that was helpful & what wasnt. Please write your messages below

    I got diagnosed with cancer in my lymph nodes where it spreads to the brains, bones, lungs, and liver.

    I felt I had two choices. Prepare for death or pretend Im not going to die from this.

    I have chosen to prepare for death & people are telling me that I am CHOOSING to die and that I do not value life because I could extend my life and am choosing not to. I also hear rallying cries that Im exaggerating and maybe the doctors can cure me. Then asking why I dont try.

    This is my answer.

    The two options look like this:
    1) I really enjoy the time I have left and come to terms with death so its not traumatic.
    2) I Spend a few years subjecting myself to all sorts of horrible experiences, getting body parts cut out being thrown around by doctors nurses in chaotic hospitals getting angry and grasping if Im neglected, being stabbed with needles, maybe tubes rammed down my throat who knows what! Maybe ending up in a bed with tube down my throat and a relative who cant let go and leaves me suspended like that with a body racked with pain........who knows.

    I am choosing option 1
    Im 2 weeks into option 1 and already my body is filled with euphoria & confidence about dying and being in control of my palliative plan. I have filled my home with flowers, celestial flowers. I feel masses of bliss in my body & am having a deep spiritual awakening. I feel so alive & everything looks so beautiful. I have confidence because I have seen the local hospice and met the care teams that do palliative care from home. 

    I may live a long time but whether I live a long time or not, I will be happy and at peace and able to let go.

    People who are dying need to be able to let go. Yet there is a constant request for them to hold on. This makes it so they go on and on trying to prolong their life and their illness becomes much more advanced. For example, if I suppress my cancer it will rise up again more extensively spread...so when I die it will be far more painful & traumatic.

    If people take option 2 there can be a denial that death is going to happen until a very late stage. Then, you have missed your chance to say goodbyes & have special conversations, because the dying person is so weak or in so much pain. 

    With option 1 you can just focus on the spiritual journey of your relationships with your loved ones reaching an incredible climax of deep love. It only took me 2 weeks to overcome my fear. Now I am so happy. Im literally going down the street and people are like....what the hell is she on!!?? Im inviting people to my life celebration and preparing special gifts they will find after Im gone etc.

    I have even put special treasure in my home so the next person who moves in will find it. Im enjoying this journey so much. Instead of having my breast hacked off and all my lymph nodes removed only for it to come back much more extensive over and over until its everywhere.

    I am pushing away the people who say why not try this herb or why dont you do the treatments.

    I hope this explanation helps people understand why people with terminal illness want to speed it up and refuse treatments that are not palliative.

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  • Khandarohi

    Another thing that is happening is my friends are trying to arrange experiences and outings to take my mind off the situation.

    This is not what I need and its not working for me. Let me explain why.

    I have got myself into a spiritual zone where I have a mental state that is ready for death. Trying to erase my thoughts or get me to stop thinking...removes that protection. The distraction technique exposes me to suffering. It doesnt protect me at all. Nor does telling me not to think about it.

    I want to talk about death. I want to say goodbye. I want to let go. So when people try to mentor me to not think about death in order to have a nice day or break, its like removing my armour to go for a swim.

    I feel like I cant talk about death because it will upset my loved ones and their advice to fight & distract myself is ..they have no idea what its like so they are just speculating about what might help. Its best to follow the dying persons lead. Dont try to be an expert or advisor unless they ask you to.xxxx

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  • Khandarohi

    Edited by Khandarohi 1 year ago

    "Arent you jumping the gun?" 
    "But it might not come to that?"

    This is what is being said to me as someone whose cancer has returned and is travelling along my lymph nodes whilst I wait for further scans.

    I am preparing for end of life and everyone is saying these statements to me. My GP, my consultant, my friends, my family, counsellors, landlord, my cleaner, my carers, nurses, death doula's, hospital chaplains. EVERYONE! 

    Even at the coffee morning drop in at my local Hospice where anyone is welcome to come talk about death..they are saying this.

    This is my reply:

    Imagine you are in a ship that is sinking. You do not know how big the hole is in the bottom of the ship and everyone is telling you to not think about it or look overboard.

    What would be of greater comfort? To get a life boat ready or hope you get to dry land before the ship sinks.

    Most of us wait till the ship is nearly sunk and then frantically scramble. This means even if we get onto the lifeboat, its not stocked up with lots of blankets, food, drink, first aid kit etc etc.


    This is why a lot of people upon diagnosis of terminal illness start to begin preparations for death straight away. Its not because they dont want to live or fight the condition. It is because they want to set up the lifeboats BEFORE they try to stop the ship sinking. Which is the logical plan to be ok no matter whether the ship sinks or not! xx

    People do not want to delay these jobs and be doing them when the illness has made them very weak & exhausted. This is why they do them straight away.

    The best way to support your loved one is to help them save energy by helping them complete the tasks, rather than being reluctant to support them doing these things. This will mean the tasks might be completed really fast & they and you can relax with your awesome custom built 5 star lifeboat in place.

    -----------------------------------------------------------------------------------

    Here is what I did;

    Upon diagnosis of the return of my cancer ................

    I gave away my cat

    I cleared my home of all possessions that do not support or have become redundant in the face of the new situation! (I can always buy them again later...if things change...Its lovely to shop. And I now have a spacious home..much nicer!)
    I cleaned everything so that it is ready for the next tenant. I made everything beautiful for them.
    I left a treasure hunt of special gifts for the next tenant to discover with a note saying "from previous tenant to next tenant!"
    I found all the instruction manuals for each appliance I have and have attached them to the machines/devices.
    I have polished and buffed all these devices so they are like new.
    I have given my most precious heirlooms to those who will get the most joy from them.
    I have set up my home to be optimum for palliative care with everything in my favourite place.
    I have bought a large amount of favourite ready meals and bulk stored them in a freezer.
    I have placed signs all around my home with instructions for carers...this is because with care agencies...new people come in who dont know the care plan or where anything is.
    I bought a selection of flat clearing flat packed boxes & have put a sign on them saying please use & where I want the stuff to go with phone numbers.
    I have written my will
    I have written the executor instructions and provided links for the executor where t go online for each company that needs informing.....the web pages are very beautifully written for bereaved people by each business.
    I have prepared my funeral as a surprise gift that will absolutely blow everyone's socks off. It is full of so many incredible quirky features! The best one is where the flower display is as huge as possible and the guests all take some of the flowers home with them!
    I have bought the most amazing dress, so I will look absolutely divine with no expenses spared, for my body if its on display & for the cremation ceremony.
    My whole plan makes it so the people I leave behind find me there helping them & supporting them. My messages continue. They can still hear me. I am bossing them around from beyond the grave.

    I have cancer growing and I have spent 2 weeks overexerting, to the point where I neglected to sleep and had less food. I became incredibly tired. BUT I was doing exactly what made me most happy. I got an inconceivable amount of pleasure from doing this. My heart feels pure. I feel like a saint. Like if secured a transition to a celestial realm if there is one!! I am telling you that if someone found me scrubbing the ktichen at 2am & asked me to stop they would have been making a huge mistake. The correct thing would have been to join in or offer to help do it the next day together.


    ----------------------------------------------------------------------------

    With this plan in place & all the jobs completed, I feel I can completely relax and completely let go when the time comes. I am hoping to have paid for everything including a large flower display when the moment arrives.

    Now my cancer may be mild for a long time but I will succumb. It will stop responding to treatment but I can completely relax and let go.

    ------------------------------------------------------------------------------

    A lot of people who are dying want to fly away. They want to let go. But they feel tethered by responsibilities, unfinished business, unfinished tasks, unresolved issues, incomplete conversations, an inability to get their loved ones to do the final conversation, up and coming appointments/meetings where they feel they "should be there still" so they dont let people down. Often they are tethered by their loved ones, Their loved ones hold them in this world & so the illness becomes more advanced & they suffer more physically from the advanced symptoms. They are tethered by life support machines, with tubes down their throat that give them a gagging relax. This tethering is like hell.

    The best gift you can give is each time you meet them to finish the meeting by encouraging them to fly away & let go completely telling them you have everything in hand regarding their estate, their pets, their children, etc etc. Then say goodbye & really mean it that you are setting them free. Tel them to fly up to the sky & you will meet them there. Say go be with name people who have died who they love.

    This will be incredibly comforting to them. I think it is the most comforting thing for someone who is dying.

    The second most is to let them know you are a pitbull who is going to ferociously guard their right and palliative wishes to the very end without holding back. And that you will fulfil every one of their final wishes exactly how they asked you to. And that you are going to be ok. Even if you are not ok...you are GOING To be ok.

    ---------------------------------------------------------------------

    This is my experience & I hope it is ok to share with you xxxxxx I hope it helps you and your loved ones & society, medical professionals, counselling professionals, palliative professionals, carers and government.

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  • Khandarohi

    I have attached a file to help people too weak to speak

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  • Khandarohi

    One common feature of the early stages of dying where the person is quite strong is that people try to get them to use distraction to cope...saying hey we could go on the holiday of a lifetime!

    What a lot of dying people need is to process what is happening to them. It is a profound journey that the carers & friends do not understand. Because its profound and beautiful its wrong to suppress & distract. 

    The profound beauty is:

    Blossoming relationships with love ones
    Relationships becoming deeper &important conversations taking place.
    Confronting difficulties between the dying person & others so the dying person gets closure and can completely let go with peace of mind
    Setting up the practical parts so when the death happens everything will be optimum..eg preparing our own funeral. This makes it so the person knows all these lovely things will happen to their bereaved relatives...and that those they are responsible for eg their children will be ok. THEN the person can relax, let go and fly away.
    Final conversations. Confronting the fact that there will be a final conversation. having it BEFORE you are too weak to do it..and making it the most incredible and beautiful conversation ever.

    All th4ese activities make the dying person feel like they are going to heaven The world starts to look like a heavenly abode. You cant get this from putting your fingers on your ears, scrunching your eyes and going "la la la I am going to be the exception I am going to beat this terminal illness and prove all the doctors wrong!!!"

    One activity you can do to support your loved one is ask how they want to be remembered and create memorial documentation together if they are very weak. They can tell you the most incredible moments of their life and you can write it down and type it up for publishing. If they want to say things to people you can bring gift cards and write the messages then you can arrange for them to be posted. Or they may want you to organize so someone gets a gift. if they are still strong You can tell them about the ideas of gifting, biographing and writing messages to send to people thanking them for various things as well as writing letters to heal problems from the past.

    This is how you can greatly help the person because its so profound dying..and it builds in momentum. The person has awakened from complacency. They have so much they wish they had said & done...not regarding self indulgence but regarding their relationship with people.

    So please ditch the self indulgence ideas and bring forth these ideas to your loved ones as activities that they can do which are immensely enjoyable and channel the growing powerful feelings and urged rather than trying to suppress and block them xxxxxxxxxxxxxxxxx

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