It seems like if we have any kind of problem we can find people who went through it and talk to them.
But we cant talk to people who have gone through dying because ..they have gone…so we cant ask them…was it hard? What made it easier…what did you find helped you through it?
Its like a big mystery we are facing.
So Im making this thread, so people who are dying can put messages of any positives to be an online record of how to work through this. We can leave these messages behind and they will help many people.
Five days ago I got my diagnosis that my breast cancer has returned. I have felt like my body was shutting down a bit for a few months prior.
I have no symptoms yet except weird creepy feelings on my chest. No pain. But I know something is seriously wrong.
My first reaction was to prepare my home to be optimum for at home care. I have really enjoyed giving away things to people who need them. Things that were in my cupboards for years that I have never used! I helped a lot of people and it made me feel good. It kept me busy.
The first day was the hardest. I went from being a normal person to becoming someone whose mind is racing at 200mph. waves of terror. Visualizing myself in a nappy and the carer not turning up. I started talking sertraline which I highly recommend. It makes you very positive & nothing phases you. Its an anti anxiety tablet.
Anyway I started doing spiritual trainings too. Im a Buddhist. I thought of all the mistakes I made in my life and said a mantra to purify. I thought of the people I was not on good terms with and did they same. Then everything felt clean & positive.
Also everyone suddenly looked very kind & the small problems between us melted away. Its like my relationships with people were becoming pure, positive & beautiful.
Then, after 5 days I got up at 6am to take a parcel to the post office (one of my possessions going to a lovely person!) As I was going along I suddenly realized everything was going to be ok. I felt this huge outpouring of relief and gratitude.
I realized death is a battle to conquer fear. The ego rises up and goes berserk. Such powerful feelings. I realized that you can give in to them or you can beat them. You cant stop death. It will always come eventually. But you can develop your response to it.
Each time the fear comes ..train or try to transform it (not suppress). For example I sometimes was watching TV and thinking how everyone on the TV is going to go through this and so are my carers. Then feeling compassion..its an incredibly beautiful experience is compassion.
So after 5 days I felt like I could see a pure realm. Everything looked pure. All the politics & moaning topics were all gone & I felt so alive and grateful. I was going down the same street I had seen as dreary for so many decades & it looked beautiful & almost pure.
So seeing these good signs (we say they are auspicious signs in Buddhism) and my heart is now soaring. Im beating the fear.
Welcome to our Online Community and thank you for sharing your situation and encouraging others to share their experience with you too.
We’re sorry to read that you’ve recently been told that your breast cancer has returned. The feelings you describe are completely understandable.
Thank you for sharing what you have been doing, and the things that you’ve found helpful for your situation. We would recommend speaking to a healthcare professional if anyone is considering options around medication.
We’re pleased to hear that you’re now feeling more positive, that your heart is soaring and you’re beating the fear.
We hope others will see your messages and join the conversation too.
I dont have the physical problem of death yet but I have the mental problem.
I have great anxiety.
The anti anxiety tablets the doctors give out are very effective. When the anxiety comes I exhibit the following symptoms.
Wide eyed super alert
The runs..bricking it
Shaking and trembling.
When I am given a hot water bottle this is incredibly helpful. If you are a carer you can try it. This is because the fear makes you go ice cold. I felt like I was lay on the grass on a frosty windy day.
A cup of tea can also help.
If we can take away these effect & know them, then everything will be comfortable & if we have confidence these techniques work. It will be so positive & comforting when they are used.
I have experienced this ice cold as my main mental reaction so I think it must be common & if we implement this it will be so positive…the warmth was so soothing it was unbelieveable.
It needs to be a hot water bottle with thick ribbs & no fur on because you need astrong heat & furry ones are lukewarm.
Cups of tea are also helpful maybe if appropriate.
Well I went to bed last night & woke up like I was nearly passing out. AND it was cool. It wasnt scary or upsetting. In fact a lot of my fear has gone now because if death is passing out thats a lot less stressful or unpleasant than having a baby or having to give a speech in front of 100 people.
Im getting a feeling like my arms are becomes clumsy and my legs are weaker like caving in weak…Theres plenty of muscle there. But what I feel is powerful bliss. Celestial bliss. Im a Buddhist. The bliss is growing and it makes you pass out which is amazing that you get the gift of bliss at the end…if its true.
What Im learning is its better to pass out and let go sooner rather than wait till the pain is even worse.
People will argue with you but you should wait till they leave and then let go completely. Make sure you have do not resusitate set up.
our country is ridiculous about death. Someone enters a transcendental blissful state and everyone is screaming and running around shaking them shouting come back. Then the paramedics come and start stabbing and ramming tubes down your throat …whilst you are trying to increase this transcendental bliss.
The whole thing needs a rethink.
I havent got my palliative plan set up yet I Im already feeling like if I let go I will go. Then paramedics would run in and start with the crash trolley not knowing Ive got a terminal illness & managed to end on an amazing note. Because they dont have time to think. They probably think its a suicide or accident.
Its good news if its just passing out gentle & gradually.
A very common problem when you are dying is that people pull at you.
You get into a tranquil safe space of acceptances, peace & even joy. Then people are pulling you out of that in ways such as:
Taking your blood pressure.
Asking you to try extreme medical treatments
Asking you to try alternative therapies
Asking for updates
Asking for meetings
Asking for phone contact
Trying to put a cheerful story into your head and remove your current thoughts which are working very well
Asking you to fight and saying you are wrong to go palliative
Wanting one more conversation, never being able to accept and do a final conversation… then leave you in peace.
Wanting to “be there” every day
Trying to wake you so they can tell you something
Wanting to offload and do an outpouring
Insisting there is a small chance of improvement and so to spend the rest of your days fighting & being subjected to chaos eg having tubes rammed down your throats & life support machines instead of preparing for a spiritual transition & letting go & enjoying the transition.
One strategy that can help is to have a primary person who everyone goes to for updates that is not you.
Another is to make a written document that states your wishes, limits, boundaries and what you do not consent to. If you just say it verbally people might forget amidst all the powerful feelings of loss & trauma they are going through but if it is a written document they can keep it and read it repeatedly.
Another idea is formulating a care plan.
The most important is to tell people you are the boss not them. And demand that they promise to abide by your wishes.
It’s heartwarming to hear that you’re finding a safe space of acceptances, peace and joy.
We’re sure that the list of things that you’ve shared there will resonate with lots of people who are experiencing terminal illness. Many people tell us that it can be a huge help to have a primary person who every goes to for updates, thank you for sharing that tip with the members of our community.
We have information on our website about planning your care in advance, in case you, or any others find it helpful to read when thinking about what is important to them: Advance care planning | Gold Standard Framework.
Normally we associate stopping breathing with gasping & desperately trying to get oxygen or suffocation. But death is not like this.
The reason why our breathing slows as we are dying is because our body doesnt need the oxygen anymore. Our blood can be filled with oxygen but our body is not using it. This is why there is no suffocation & its just like relaxing and comfortable for most people.
Our body gradually does less and less tasks and it needs less and less. It needs less food, less water and less oxygen. So there is no desperation or deprivation of any of these things. Its like when you are asleep. If you sleep for 16 hours a day you will need less food less water less oxygen than someone walking around for 18 hours a day.
The death rattle is simply because there is a bit of saliva or mucus on the air passage. Its not a sign of struggle. Its just because the person hasn’t swallowed for a while. Just like these do not impede you during sleep they will not impede you during this incredibly deep sleep. And if you have been surrounded by kindness..the dreams in this deep relaxing sleep with be of all the recent beautiful people you have met & who have shone their love into your life and heart. I hope this helps you xxxxxxxxx
Thank you for sharing your experiences with us Khandarohi. Seeing what you have personally found helpful may assist others when thinking about what they would want to do or how they can help someone they are caring for.
Thank you so much for writing this. I have AML and just had my fourth relapse. I was looking for guidance from someone going through the similar thing. I’m so happy I found your notes! Your words are so relatable, and they make me feel less alone.
My journey towards death has taken a biographical turn. Im telling you this so if you might develop the same..you can realize it sooner and start developing the biographical records BEFORE you become weak physically>
Im always way ahead of the game. The cancer is travelling down the lymph nodes towards my organs & Im getting the most epic biography written out so my loves ones can read it when they miss me. Its got many gems in it..things they didn’t know about me xx