Lindsay Norris' Letter to Patients - "Sorry, I didn't get it"
Brenda5
Member Posts: 2,423 ✭
Empathy statement from an oncology nurse turned patient.
https://www.youtube.com/watch?v=bIXLcxnFqns&feature=share&fbclid=IwAR2ju2mYXgmMlEN8YruUaiBGEJ7wPEofV1SpLu4NfWKsZPFCef6Yl7wr4Gs
https://www.youtube.com/watch?v=bIXLcxnFqns&feature=share&fbclid=IwAR2ju2mYXgmMlEN8YruUaiBGEJ7wPEofV1SpLu4NfWKsZPFCef6Yl7wr4Gs
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Comments
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Yep. No-one gets any of it until they do their particular version of the whole shitfight.0
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It would be nice to go back to that innocence of not knowing!1
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Yep - even those looking after us 'don't get it', til 'they get it'!
Thanks for putting it up xx3 -
Thanks @Brenda5.
It seems to me that those with stages 1 to 3 breast cancer do not get what it is like to have stage 4 breast cancer.
Sure, it is easy to criticize when someone speaks about their treatment and side effects. Maybe, it isn't helpful, but it is my experience.
When I had AC chemo. the available anti-nausea medication did not work like that used now. Spewing my guts up was my experience.
Do you know what it is like to have had 37 lots of I.V. chemo.? I do.
Not everyone has the opportunity to use cold cap so they don't lose their hair. I have never had this opportunity. I don't think my hair will ever grow back.
Not everyone has access to breast care nurses.
Just because someone you know has had chemo. does not mean that you will know exactly what it is like. You can empathise as much as you want but you still have no idea.
I have had 11 types of anti-cancer medication. None of them has worked for any length of time. That is what happens with stage 4 cancer.
Do you get what it is like to have stage 4 cancer?
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@Patty J my dad had stage 4 and the chemo was very harsh on him. Eventually the doctors abandoned it as the side effects were not compatible with quality of life which is of most importance if there is no gain from treatment.
Dad recovered somewhat from the chemo and he looked much better and got on with things he liked to do in a limited capacity. He got into fancy cooking and gardening in pots and bought all those expensive type ingredients and stock that he wouldn't normally buy. Even though he couldn't go fishing he bought rods and rigged them up to fish but hung them as decorations with his hanging plants. It was like a treat for him and also worked as a bit of a tonic for his soul.
Radiation treatments helped with chronic pain for a while so painkillers were needed less.
Eventually the cancer took over and he died 5 months ago with us, not in a hospital.
All of us on this earth will die one day but dad at least got to have quality time with us and we all rallied to say goodbye. Loved ones taken suddenly don't get that luxury.3 -
Dear @Patti J
You are of course correct. Most people only really understand something when they have experienced it themselves. And many people put up, consciously or unconsciously, a barrier to opening up too much to something we really fear or dislike. Before diagnosis, if we can remember correctly, how many of us were really interested in what it was like to have cancer? I know I took the ‘won’t happen to me’ path. Problem is, I honestly don’t want stage 4 cancer even if that is my only means of truly understanding. I don’t want anyone to get cancer in order to ‘get it’. I’ll try and take comments in the spirit they are intended from those who don’t understand. And in that spirit, I wish all of those with stage 4 breast cancer strength, hope and patience, particularly with the blunderers who don’t full understand. Best wishes.5 -
@Patti J Of course one doesn't truly understand what something is like until it happens to you. It is the nature of existence as a human being. The 'walk a mile in my shoes' type sayings speak to this, essentially a request for empathy.
As @Afraser said, many turn away from the scariest things. Because it is too scary, or too much to add to a full plate, or sometimes because they lack empathy. Some people are more empathetic than others. I would suggest that the nurse in the clip has oodles of empathy. She was drawn to a caring profession, and then through her own diagnosis, realised how much she didn't know.
No, I do not know what it is to live with Stage 4 breast cancer. That doesn't mean I don't have empathy and sympathy and care for you and all in your position. I have had the unfortunate experience of watching two people close to me, my sister and sister-in-law, die from breast cancer and a brain tumour respectively. Up close, in their bedrooms, their hospital rooms, caring for them, cooking for them, and holding them when they cried. Their deaths were not like deaths in the movies.
So I feel like I have a better understanding of what it's like to be Stage 4 than some. Neither of these women were old, both were leaving behind young children. Hearing your sister repeatedly sob her heart out about never seeing her children grow up is simply the most devastatingly sad thing I've ever experienced. They were eight and ten years old when she died. I'm now raising them.
I have never had a child die. But my parents have, and I live with a man who has (my father-in-law). And his wife died at 39, dropped dead on the kitchen floor from a brain aneurysm. Found by her eleven year old daughter (the one who died in 2015). I don't know what these horrendous experiences are like but I know what the effects look like, and have deep care and empathy for the people involved and the effects it has.
Life is full of dreadful dreadful tragedy. A fully rounded human being turns towards the events, the people left behind, to comfort, to understand the distress so they can help.
However sometimes it's too much. Sometimes people have horrors in their own lives and cannot take on any more. Sometimes people don't know what to do or say, are embarrassed by their inabilities, and don't respond in a way we'd like. And there are the people who don't want to know at all because it's just too scary. So many people here can tell the tale of lost friendships upon diagnosis.
On the rare occasion when my husband and I are invited to a big party or event, the type where we'd meet new people, we often discuss how much information about our life we'll explain. We don't always have the emotional resilience to deal with the responses. Either the kind ones, the over the top empathisers who weep, or the ones who pretty much immediately turn away.
I think this forum is a special place because we do understand the anger and ths fear, more viscerally than most. So no, I don't know what it's like to have a terminal diagnosis. And you will never know what it's like to raise two seriously traumatised, extremely difficult young children who were abandoned by their father and whose mentally ill mother died from breast cancer. That doesn't mean I don't feel for you, I do. I hope I don't ever know what it's like to be Stage 4, but my chances, everyone's chances here, are higher than those who aren't here. So everyone here feels for you more than those who aren't.
I get your anger Patti. I wish I could make it all go away for you, for all the Stage 4 folk. But I can't. The best I can do is empathise with the bitter horror of a life cut short, and wish for your meds to keep you comfortably alive as long as possible. K xox
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Well said @kmakm
No I don't want to know what it's like to have Stage 4 however I do know what it is like to have Breast Cancer and have the ifs, maybes, hanging around my well being trying to overtake my life. I am stronger than that but like most there are days where I think who the, what the, why! The side effects that come on and you think I didn't expect that and so it goes!
Life throws up all sorts of traumas for us all and for me I have had my fair share and hope that there's no more on the horizon for some time yet and I can keep on going and enjoying life without the ifs, maybes dominating!
Take care @Patti J
Please understand we get it and do have empathy
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That gremlin   - ggrrrrrrrrrr!0
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Dear @Patti J
I don't get what it is like to have Stage 4 cancer.
When I was diagnosed with Stage 3 cancer, I cried that night, thinking about my brother who passed 10 years earlier, who was diagnosed with Stage 4 and given under a year to live.
I cried because I "didn't get it".
I didn't get it how scared and isolated he would have felt.
I didn't get the pure fear of knowing he would be leaving his wife and 2 adult children without him in their lives.
I cried because I felt isolated with a Stage 3 diagnosis, and how much more isolated did my brother feel at the time, I didn't get it!
I miss him every day. He put on a brave face, and now I am sure he did that for his family, parents and siblings.
Patti, you are most welcome to keep saying what you want to say here
Because truly, we like to say we all "get it" here, but truly we don't. Just like the nurse, we only have a little insight if we are not Stage 4.
Sometimes the cards we are given are just too "shitty" for words.
Please keep posting.
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I just want to say that I do care, even if I don't really get it. Best wishes to all.2
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I currently have 7 close friends with Stage 4 - 2 with colon, 1 with prostate and 4 with Breast Cancer (the last one just diagnosed 10 days ago.) 2 are in my uke group. 2 are in Qld & the others are locals.
They are all leading as productive and positive lives as they can, given their diagnosis and ongoing treatments.
Every day, they are out there doing what they love doing, whilst they still can and displaying the most amazing fortitude and resilience.
If I ever develop Stage 4 (and I hope I don't - but let's be honest here - any one of us who 'don't get it' .. may .... ) I will be looking at THEIR behaviour as an example of how I would deal with it.5 -
I am not out there doing what I love to do, as I live now on a very low income and unable to fully engage in the work force, and am too young to receive an aged pension. Sometimes a cancer diagnosis just happens at the most inconvenient time in our life, although I accept it, I do live a very different life now, just struggling to keep a roof over my head.
Some with Stage 4 have to keep going whether they like it or not, and some cannot afford to stop and smell the roses, and I find that particularly sad when I hear those stories.
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I am sorry to hear that @Keeping_positive1- I hope that you are able to find something fulfilling to do most days - be it a walk, catching up with friends, checking out the free magazines & books at the library - or even volunteering.
My Stage 4 uke friends & I entertain the elderly in aged care facilities about 6 times a month (many of whom have dementia) and we find this very therapeutic. Volunteering doesn't cost anything, but gives bucket loads of goodwill and pleasure to those who aren't able to get out. Very much a win/win situation where they feel good & we feel good.
Are you able to approach your bank re reducing your payments, or access your super if you are not able to yet?
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