My neighbour stood six feet back from the doorstep to collect the heavy box that I had been babysitting since its delivery. His eyes were fixed on the headscarf I use to cover my baldness.
“We’ve heard you have cancer?”
“Yep.”
“Curable?”
“Nope.”
“I can see you are on chemo,” he nods at the hairless head. “Will it help at all?”
“It might buy me some time…”
“Cool. Thanks for clearing that up. We’ve been watching you since the ambulance came a couple of months ago, but of course, we couldn’t just ask…”
That is how the conversation could have gone. Instead, all I got were thanks for minding the parcel and some curiously furtive looks, as if one of us should be ashamed of themselves for some reason, whether that would be him for what was going through his mind, or me for having cancer in the first place.
Not everyone who has cancer gets chemotherapy. Not every chemo drug makes you lose your hair. Some will look gaunt and grey throughout their illness, I’m looking hairless and rosy-cheeked. But either way, cancer seems to be one of those elephants in the room at which no-one wants to be seen to look.
Don’t get me wrong, I don’t blame anyone for that… it is also one of those things where you never quite know what to do or say… and you pretty much feel that anything you do say is not enough. Or too intrusive, or too much. Or does not hit the right note…
It is the same wherever I go now… I cannot escape the label of cancer. The scarf-wrapped head and chipmunk cheeks are a dead giveaway. Anyone who knows me, from shop assistants to acquaintances, have questions in their eyes that they dare not ask. I am tempted to get a T-shirt printed… with ‘yes, I have cancer’ printed on it, although the way some people look at me, it might as well say, ‘leper, outcast, unclean…’
It is not necessarily any easier at this end of the conversation… or silence, especially when there is so much kindness, sympathy and empathy out there. I may have accepted the fact of a curtailed lifespan… may even be able to make jokes about it… but I know that there are people who care who still have to reach that acceptance. And not everyone is happy hearing me talk about the practicalities of funerals, methods of disposal or where to buy the cheapest coffin. Not everyone is ready to hear that ‘treatment’ is not synonymous with ‘cure’ and death is yet another elephant in the room.
So, bizarrely, is normality. It is almost as if, once it is known that you have cancer, you are supposed to give up the ghost fairly rapidly… or at least have the decency to be properly ill. To be carrying on as usual, being able to do many of the things you would normally do, just does not seem to compute. Neither does a ‘use by date’ on your life that can fall anywhere between ‘weeks’ and ‘years’, depending on whether those treatments that cannot cure, actually work to extend useful time.
As Mary Smith highlighted in her cancer diary this week, we are surrounded by uncertainties and unknowns. Across so much of your life, once the label of cancer has been duly applied, there are few definitive answers and far too many questions… and I for one would much rather know what is happening. Having said that, I would also much prefer people to voice their questions than to treat me as if I am yet another elephant in the room… even if, at present, I feel as if I look like one. *
*That extra weight? It’s the steroids. Honest.
I think that people don’t state the obvious or ask the questions swirling in their heads because they think you must be tired of answering them all the time. We do have this unfortunate tendency to gloss over the awkward by staying silent.
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Very few actually ask… and I would much rather answer a question than try to guess what people want to know 😉
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I can understand that. I’m sending you lots of hugs and best wishes.
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Thank you, Sadje. I appreciate that x
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❤️
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have a lovely weekend, Sue ❤
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Thanks, Lady Lee ❤
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🙂💕🥰
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It’s a hard situation, Sue. No one knows how a person will react, so they choose to take the safe route…
You take care 🥰
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I know, Ritu… and so many things remain unsaid because no-one dare ask…
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I’m like you. I’d rather people asked… 🥰
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It does make life easier.
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Absolutely 🥰
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My dad hated talking about any of it. It put up barriers that it took his granddaughter getting upset for him to realise and release him from a lot of fear. Funny remembering that now and sitting with him him nurturing a medicinal calvados – ‘compliments the tablets boy’ – while he explained something of what he was going through. He told me he thought we had it tougher than him because he’d got used to the idea in ways we never could and I didn’t understand at the time but since i still miss the old sod 15 years on i suppose I do now. As ever thank you for sharing this irritating journey you’ve been detoured into – more of life’s roadworks sending you up back alleys you’d not realised were there. As here’s to having a good week Sue.
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Thanks, Geoff. I agree with your Dad, having been on both sides of this, in many ways it is far simpler being the one with the cancer than the one watching.
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Sue, thanks for such an important post.
I have been thinking how in recent years doctors have tended to move way ahead of the public in relation to openness about cancer. The medics, here in Ireland anyway, are extremely open about it compared to the cloak and dagger stuff of a few decades ago but many, many people are still stuck in awkwardness about it.
I hope you have a weekend filled with love.
jx
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There is a huge amount of fear still attached to the thought of cancer, even though so many more cases are now curable. It will take time for that to change.
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Very true. I suppose there is bound to be a lag, though most people have been impacted by it in one way or the other. I guess those with more ‘modern’ experience are better able to talk about it though even at that everybody is so different in their approach to illness and mortality.
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I am grateful for having worked alongside a hospice charity some years ago and seen how much progress is being made with many types of cancers.
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And it seems like the Covid research will also help in the cancer world which would be a big bonus.
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There needs to be something there, considering how many cancer patients have bee adversely affected by covid cancellling or delaying necessary treatments.
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Absolutely. Same here in Ireland.
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This is the time of year when my own old friend rears its ugly head again, as I prepare for my fourth-year annual check-up/mammogram… One more year to go before I am classed as ‘cured’…
maybe then I will believe it… I really wish yours could be the same, Sue…
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I just hope all is well with you, Jaye.
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Starting together nervous again, but expect it will be fine…
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Reblogged this on Anita Dawes & Jaye Marie ~ Authors.
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Thank youfor sharing, Jaye x
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I can understand how much harder this make things for you, while I know that people act of out kindness, respect, and not knowing exactly what to do, it would make life easier if they could talk to you about it. it must be very challenging to deal with on top of everything else. I appreciate how you can write so openly and honestly about it, it helps us all to understand, and will help me with people in my life who may go through similar experiences. you are amazing and your energy glows through it all.
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Thanks, Beth. There is no way to sugar-coat something like cancer. But being able to talk and write openly does help… at least for me.
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You may not even know how many people on all sides of this situation you help with your words
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I just hope it does some good, Beth.
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Basically, people don’t like to be reminded that death is real. Someone who is walking around with the C word written all over them is a living reminder that yes, it does happen to everyone in the end. It’s almost as if you’re one of the unlucky ones who have caught ‘death’, because of course, if we avoid the subject and pretend everything’s as it ought to be, we can pretend we won’t catch it.
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Exactly, Jane. It puts me in mind of a piece I wrote ages ago, having read a headline about “running reducing the risk of dying”
As if…
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We even have a euphemism for euphemisms now. ‘Passing on’ or ‘passing over’, have become ‘passing’. Makes death no more disturbing than walking past the gate.
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I don’t think it should be any more than that, in many ways, considering it is a natural and necessary part of life. But if we are using those terms to avoid mention of death and dying, then it is probably not all that helpful…
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It always makes me think of primitive superstitions, making signs to ward off the evil eye, not calling things by their right name. It’s for the benefit of the person speaking, not the one they’re speaking about.
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Like hiding under the covers… ‘If you can’t see me, I’m not here…’
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Yup. And elephants are so huge sometimes you don’t notice them. We visited the newly refurbished Natural History museum in Bordeaux last summer (2019) and when we came out, Hugh, our middle child asked me what I thought of the elephant. I didn’t know what he was talking about. He took me back in and pointed at this stuffed elephant in the middle of the entrance hall. I hadn’t even noticed it…
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Hidden in plain sight…
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I felt such a twit.
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I was in New Zealand with my daughter just after her hair came off. She wore a beanie hat most of the time and in shops, people we spoke to would sometimes ask, ‘Cancer?’ (only the women though). Her friends and her workplace were amazingly supportive, and still are.
I went out there for her hysterectomy (and the rest…), which never happened. A pre-op scan (after the third chemo) showed no shrinkage of tumours whatever. Chemo was stopped, and further scans showed it had reached a lymph node so the massive operation planned wouldn’t have eliminated it. Thinking was that she had a ‘slow growing’ ovarian cancer, which is good news and bad news. It’s being ‘managed’ long-term with drugs and there are options when the current drug stops working. It is currently incurable. (Where there’s life…) She was relieved to have stopped chemo.
Her hair has grown back and there are now no visible signs of her cancer. She is, in fact, very fit, although her energy levels are nowhere near her pre-cancer fitness. She has learned to manage that so it isn’t obvious unless you knew her before.
None of us know our end, but I’ve no idea how one manages the knowledge that one’s end will be sooner, rather than later. I’m sure she’s coping with it better than we are.
Good luck with that chemo – it’s a b_ _ _ _r.
I hope it buys you time and real improvement.
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It is heartening to read how well your daughter is doing, Cathy, in such circumstancs, and long may that continue!
I’ll be on the third cycle of chemo next week, followed by that scan… so I’m keeping my fingers crossed as a bit of shrinkage would be useful.
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Got fingers and toes crossed for you
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Thanks , Cathy.
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I am not know for holding back on asking where others fear to tread, Sue. I knew about everyone who was having, or had endured, cancer treatment in my office. I think people need to talk about it. With talking comes a sense of relief even if it doesn’t physically help. The Brits are known for being very ‘stiff upper lip’ and undemonstrative, so maybe its upbringing and background. I am glad to know you are able to get some things done.
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Talking or writing about it does help, although that will be different for everyone to some degree.
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I think some of the not asking is because people think it will remind the sufferer of their illness. Also, the little child’s idea that if you can’t see it (don’t mention it) it doesn’t exist.
Some people with a serious illness are happy tomtalk about it, but others not. It’s sometimes difficult to know which kind of person you are talking to.
I hope you can battle this elephant for a long time.
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I don’t think there is anywhere to hide from cancer, Viv… so being reminded is not really a problem.
It is always awkward knowing what and how much you can say or ask, but when it is someone you know fairly well, you usualy have an idea…
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As i read this, I kept thinking the word “cancer,” could be substituted for “blind.”
Everything you described here is what a person experiences who suddenly loses sight –
In a moment, life changes forever. No one knows what to say to you, and so most will disappear from your life rapidly. Others keep a distance and just watch you> it is all so strange, isn’t it. For you now, it is the scarf and the change in your features that they see immediately. For me, it is the white cane that gives the alert – Warning – Stay Away – Maybe it’s contageous.
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My son was stabbed throug the brain several years ago, Lynda, leaving him brain injured and disabled…though still very much himself. He experienced the same thing and many friends just melted away, unable to handle the change.
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Another honest post Sue, and you have my total admiration. We know that we are all going to die at some stage, but when you have an idea of when that is, people can tend to avoid it.
We have an acquaintance who was given three months 2 years ago. She is still going strong,has had several surgical procedures, didn’t lose her hair through chemo (in fact she says it’s growing so fast, she can’t keep up with it, but it’s not just on her head apparently!), and is enjoying her life. They have just found some more inoperable tumours but she is taking it in her stride. She booked a two month holiday last year, and they advised her to only take a month. As it turned out, the second month was a cruise and it was cancelled anyway. She’s mad that she’s still waiting for a refund!
Another friend has inoperable cancer, but has been told it is manageable though not curable and she could lead a long life with it. Her scan showed a considerable shrinkage, and she is over the moon, as am I for her.
So many don’t know what to say, how to act, and are afraid to say anything. Sometimes our well meaning comments come out as trite and repetitive which is far from how they were intended.
There is always hope, and I am hoping there is a shrinkage in your tumour too. Thoughts as always are with you and your family. xxx
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The medical profession can do so much now to prolong good quality of life for cancer patients. For me, it is just a case of wait and see… xxx
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Everything crossed for you Sue.
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Thanks, Di.
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Yes, it is an elephant in the room and everyone is different about how they handle it. A good friend had cancer and a mutual friend asked her how long she had to live. When she told her, the mutual friend lost it and became hysterical. Which didn´t help either one of them. She asked me if I wanted to know. I said, no, I just wanted to enjoy the time I had with her. Which we did. Have a great weekend doing what you love to do. xo
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Everyone handles things differently and I would not impose knowledge on anyone who didn’t ask… I just wish it were easier for people to talk about.
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Pingback: Speechless Encounters with the ELEPHANT in the ROOM – Lynda McKinney Lambert
Thank you for linking to my post, Lynda.
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It must be hard to deal with so many unasked questions. I’m sure others are just afraid of saying the wrong thing, and they don’t realize their silence is making it worse.
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Perhaps because trying to get straight answers from the medical profession is so difficult, I would so much rather answer a question than watch people wonder… 😉
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Good post, Sue and thanks for the mention and link to my ramblings about the uncertainties. I had an odd conversation the other day when I met someone out walking.
“Nice to see you. I heard you had cancer. How’s it going?”
“OK, thanks.”
“How’s the chemo? Have you not lost you hair yet?”
“No, it’s thinner but the doctor say I probably won’t lose it.”
“You are looking awfully well.”
“Thank you,” I say, fighting off the urge to apologise for not looking like I’m riddled with cancer.
Despite the number of people cancer affects it really is still a difficult topic, probably because of its reminder that death may not be far away – even if we don’t all look like we’re about to pop our clogs at any moment.
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I would so much rather than conversation that the ones where nothing is asked… but I know just what you meanabout feeling we should look worse than we do. (Especially as one of the neighbours ‘caught’ me wearing the rainbow wig for Hollie’s birthday today… : ) )
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It is hard to know what to say or ask. People don’t want to be intrusive, though I’m sure their looks can be. And, of course, there is that reminder of mortality that nobody likes. I’m sure all of it is even worse today with all of the paranoia, and real concerns, over Covid, this adds another dimension…
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Covid has made a difficult situation very much worse for so many people. Knowing you are in the latter days of life and being kept at arm’s length and isolated is not what you need…
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I used to work as a hospice counselor, Sue, and navigating the end of life, for all involved, was always complex, the differences as varied as there are people. I had to meet the person, the family members, the community, where they were, and see where we could go as conversations about the experience progressed. There is no right way and few wrong ways, but communication with an open heart seems to be the balm. Thank you for sharing yours. ❤
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It seemed strange to click the ‘Like’ button for this, Sue. From my own experience, I have had occasions when I’ve ducked the questions, and others when I’ve asked them – usually prefaced with a comment to the effect that, whatever I say next is going to be clumsy and/or crass. Looking back on those times, I think the choice has very much depended on my own state of mind when the situation arose. But the right thing is to ask, even if you’re concerned about upsetting or offending the person you’re asking or, worse, you’re worried about how the answer will make YOU feel.
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Hi Sue,
As writers, it is a given that we love words…and you know I am a fan of your beautiful writing. BUT, it also seems to be a given that – faced with SAYING the right thing at the right time, is much more difficult.
Many years ago, I was one of the first people in the UK to have a smear. Thankfully!
Within days, my lovely old doctor rang me. “We think you have Cervical cancer and have arranged for an operation this coming Friday.” Gulp. The C word was a no-no then, so I told my husband and mother I had a “genealogical problem”‘ and they swallowed it. I had three sons by then and the baby was still under a year.The truth was divulged after being in hospital for two weeks, and I later discovered two of my sisters-in-law.were discussing who should bring up our sons! Despite haemorrhaging, etc,I, obviously, survived. Ironically, I lost all my hair and eyebrows after a serious illness in my fifties. Always live in hope, Sue .Hugs xx
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I see you Sue, I speak to you. I can understand why people only see the elephant. They are scared , threatened those clises to you don’t want to accept the situation.
It’s hard for them but it’s harder for you. 💜
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I remember when the word cancer was a death knell. I think the fear of it froze people, making it inevitable that they would not live long. Nowadays there are so many treatments that their lives can be possibly longer and less painful. My mother died of it but was alive for ten years after diagnosis. I wish you the best for your elephant x x x
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Reblogged this on The Light Behind the Story and commented:
From Sue Vincent:
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Life is a blessing, you are a blessing and at some juncture we all have to end it in some fashion. I have seen the pain and agony of many family members die from cancers, and some live on after righteous battles for many years. I wish for you all the light, love and peace you kind find in this painful and difficult challenge you face my friend. Many healing prayers to you.
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Cancer is a part of life and it won’t go away unless someone comes up with a cure, but there will always be something else. Life on Earth is not eternal. I’ve lost my mother and far too many friends to cancer. Each of them wanted to live with dignity and appreciated comments such as, “How are you doing today?” Sadly, most don’t know what to say and feel at a loss if they can’t come up with some magical string of words to make it go away. I pray each day that you will feel less pain and find joy in the world around you. You have given so much joy (and continue to do so) to so many of us. Though we live on opposite sides of the Atlantic, I feel our friendship knows no boundaries. Through your posts, comments, and e-cards, I believe I know a lot about you. This friendship, possible through the internet, is as real as any other friendship. Take care, my dear friend. I’ll be checking back. Love and hugs. ❤️
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Sue, thank you for being kind and brave and authentic in sharing your story… It’s one of those topics we tend to shy away from because we don’t know what to say or how to act when a friend, neighbor or loved one is hurting. ❤ Sending lots of love your way and wishes for many a lovely day… xo
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Reblogged this on Campbells World and commented:
Blogging with love.
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Thank you for sharing, Patty.
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I’ve known those who wanted to talk about it and those who did not. If you know someone well, you know which group they belong to. But if you don’t, I can see where it would be hard to break the ice. There are also those who are not going to be cured, but who won’t accept death, and that causes a whole other set of problems. And those who accept it and want to plan, but whose families refuse to let go. We are complicated and contradictory creatures. You have my admiration for your directness and for your refusal to wallow in feeling sorry for yourself. Its a good example to us all. Sending hugs, K.
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I have my moments… I doubt it would be human not to shed the odd tear or shake a fist at fate occasionally. Of course I would like more time… but, given how close to dying I was when I collapsed, I already have extra time, so I won’t complain.
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Truly, a HUGE elephant in the room. One never knows what is the right approach, what is deemed proper or improper. There ought to be a manual, damnit! What does Emily Post or Dear Abby have to say? There are both views to consider, the patient and the non-patient… is it a good day for them or not? Would they rather not talk about it, is it ‘none of my business?’
I have a client who has pancreatic cancer and I always ask ‘how is it going?’ and he tells me, but there are many questions about details that go unasked. I feel devastated for hours afterward. Death comes to all of us eventually, but we have such a hard time dealing with it and the pain of loss it brings. Humans are hobbled by their emotions most of the time, it seems.
Sending you hugs, Sue, thanks for being who you are. ❤
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I know… and everyone approaches death in their own way, whether their own or someone else’s end… For myself, and we can only ever really speak for ourselves, I am glad of those who ask and really want to know. Not necessarily all the gory details, but how it feels. Oddly, Ani worries me most because how do you explain?
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Dogs are generally pretty astute. I hope she can be with you until the end (I hate that thought and the tears well just thinking it, but there you are), both for your comfort and hers. She will ‘know’ I think. ❤
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I hope she can too, Eliza. At the moment, whebever I lie down, she tucks herself behind my knees with her ruff just in reach for burying my hands in. She is never far away.
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❤ ❤ ❤
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This is approximately the point where I began hating things like church gatherings. I couldn’t bear to be asked “How are you,” and know that whoever asked it does NOT want to know how I am. I needed — still need — a lot of time mentally alone. It doesn’t matter if others are in the room, as long as they don’t expect me to chat. I’m just hoping you get the time you want and the love you need.
I wish I could tell you there was some way to make people feel less nervous with in touch with serious illness (they get this way about hearts, too) and any potentially lethal end. I often don’t know what to say, but I know that we communicate best with each other. Some commonality of experience.
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Sometimes it isn’t about the words, whetehr they are said or not… you know when a heart is open to listen.
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I know it’s not the same, but I have a similar thing happen with my lack of sight. The questions are there, but instead of asking them the subject is tiptoed around with such care I feel like I should be wearing a sign that says, “Yes, I’m blind. No, I can’t see anything at all. Don’t worry, you can’t catch what I have.” It wouldn’t cover all questions, but at least it would cover the main points.
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Sadly, Tori, that seems to be an all too common perspective where illness and disablity are concerned.
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I agree with the comments that many people don’t ask the question as they also don’t really know how to deal with the answer…A shame for you Sue as you seem at peace and to have acknowledged that what will be will be …You are one amazing lady for whom I hope you get the maximum good time that pesky cancer will allow…God bless you…Hugs xx
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It is a shame really, Carol, as once you acknowledge that life is finite, it becomes so much ‘bigger’. 🙂 x
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Absolutely, Sue and that’s why I love Buddhist teachings… xx
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I was brought up with them, Carol… it makes a huge difference to how you see life and death. xx
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I didn’t know that, Sue but you are correct it does we attended a funeral last week which was over 3 days as you make merit for the deceased but it was so lovely, peaceful and respectful…xxx
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Those words more or less define the beliefs for me. x
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For myself, I always SOO appreciated when one in my circle of loved ones, took the ‘lead’ – for me, I can follow durn near any lead they give me – “wish to talk about it/or no”, “wish to plan the wake, pick music for service/or not discuss, for hope still reigns” – wish to be called upon for things one used to be depended upon for/wish for you just to sit by my bed, and when I’m awake, share memories” – etc., etc., etc. Everyone’s experience of a terminal illness, how they live with it, treatment/not, how they live with the knowledge/prognosis, etc., is as unique as they are – so in the end, for one on ‘the outside’ looking in, I am always grateful when another I love gives me at least a ‘crude map’ of the path they are wishing to walk, just now. I recently talked with an aunt who has been under ‘all we can do is manage it’ prognosis for a couple of years. She has accepted, and yet, recent manifestations of it leave her frustrated to ‘do what she wishes to do’, to be needed, and the fear one always has, deep within their soul, of ‘what if I’m not strong enough, dignified enough, [insert character strength one has spent an entire life dedicated to….] and yet, bless her merry soul, she is rather an extrovert – a ‘take the bull by the horns’ gal, thus, all I had to do was ‘go along for the ride’ – which, I reminded her before we said goodbye and ended the call, was such a wonderful gift to another, that she might not see as a gift, but I held and cherished and was SOOO appreciative of. You, in your own way, are bestowing that gift to me, as well – hugs and ❤ ❤ <3s and well – let me know if I need to get you a funny t-shirt made for when you go out and about – granted, you'll have specify or put up with American humour – but there is a lady who makes t-shirts that lives about 3 blocks from me….. 🙂
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I am just grateful there are those who are happy to come along for the ride xx
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Oh, HECK YA! Magic Stones, Fairy Circles and I’m certain a unicorn or pegasus is going to show up, too – cuz you keep my faith alive!! 🙂
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Ah well. we have unicorns in the field over the fence… you just have to wait for full moonlight to see their horns and wings. Just ask my granddaughters 😉
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A man I know quite well (he’s about 65 and I used to talk with him on a weekly basis before I went to my new job) was diagnosed with stage III lung cancer just before I left. He didn’t tell anyone – I found out through his daughter who, coincidentally, I am good friends with.
I mostly follow for your awesome haikus, but I think if I were to have you minding my parcel, I’d like to hear about how you’re doing on your bucket list. Are you, like my Mr. L, looking to make your first Scottish Clan flag and wave it at a church ceremony? Are you going to call a car dealership and force the salespeople to bring you cars to test drive, and also have them help you with hoisting the oxygen machine inside? I hope you’ve got some things already ticked off your boxes, but I also hope there’s more left to check!
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Oddly enough, I managed most of what I’d call my bucket list before finding out I was ill. Only covid restrictions are getting in the way of what’s left.
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Sue, I think people just don’t know what to say or how to start a conversation when it comes to cancer. Perhaps if you open the door, they will be relieved, and happy to talk. That’s just how people are. Best to you!
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I do my best to leave it ajar, Jennie, without forcing anyone to look through if they aren’t comfortable there.
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That sounds just right.
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When I went through my cancer joust, back in 2013 (hard to believe it was that long ago 🙂 ) we had a Christmas family gathering and one of the things I instigated was a sharing around the table of what had gone wrong and right for each of us during the year. I finished my bit by saying words to the effect that I was glad cancer hadn’t killed me … cue stunned silence for a few beats wherein I just smiled at them … then the next person started speaking.
I was wondering how those ‘I’m going to be dead sooner rather than later’ conversations went.
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The ‘sooner rather than later’ conversations were quite surreal… very calm the first time around. Not so calm the next time… I found it tok twice before the acceptance and tears came. They were the hardest bit.
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Yeah … grief sucks.
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Pretty much.
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Arg, I’m so bad at death stuff, so guilty, I’ll bounce around the elephant in the room. But I think most people naturally, don’t want to seem like they’re prying and don’t wish to make anyone feel uncomfortable. Sometimes I feel there just aren’t the right words. ❤
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I don’t think we need the right words, so much as the right feeling. ❤
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Absolutely, the sentiment ❤
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I guess if I know the person, I would know whether to ask or not. It’s important to get that feeling right. I am ashamed thinking back to times when I tiptoed around that elephant.
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We all have to approach elephants in our own way…
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