 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Breast Cancer / July 2004Words for Stage IV Caregivers & Others
Originally sent via web-based b.c. mailing list: -- Less than two weeks after I signed up for this mailing list, doing so w/ the hope that my wife would rebound (as she always had) from her Stage IV weight loss, she suffered a fullblown seizure while brushing her teeth before bed one night. Four days later, on her 42nd birthday, as I held and kissed her, w/ her family huddled around her bed, she drew her last breath and was gone. Nine years she endured this hideous disease. And still I was shocked when her oncologist told me it was "her time" as I called him from the E.R. following the seizure, the first time he told me outright she was dying. "Dying?" And before my wailing hit full stride, he said, "Look...Don't let them put her in I.C.U. Don't let them hook her up to an artificial respirator to prolong what's going to happen anyway. Don't let them try to re-start her heart if it stops. Don't let her last moments be terrifying ones, w/ a herd of scrubs around her...Get her a private room. Comfort her. Make sure she's not in pain. Be there for her." (At a time when I didn't want to hear any of this, I quickly realized how important his words were...The MD in E.R. wanted to run a dozen tests, put her in I.C.U., tube-down-throat, etc. Thankfully, she was conscious, and said "No I.C.U." when I broke the news and presented the options. Not a decision I wanted to make for her if I could help it...) One thing...I'm guessing I've been a typical half-crazed, always-looking-for-a-cure caregiver...I'm 36, was and always will be, madly in love w/ my lady...and often would spend dozens of hours a week poring over clinical trials, new treatments, i.e. lots of crap I could barely understand and what eventually would do little to nothing at all as far as helping out. What I wouldn't give to have a single hour from any of those fruitless late-night marathons to simply lie beside my sweetie and watch a freaking bad movie, holding her as if there's nothing more worthwhile, doing nothing else, which is all that matters. All there is. I know it's easy to say this now (?) and I'll say it again... ...what I wouldn't give to have one of those many wasted hours, all that lost time that bore nothing but frustration, bloodshot eyes and headaches. For me? It seemed I didn't have a choice. There had to be something out there, right? Though not for my wife there wasn't. She knew it. Her MD knew it. Everyone but me seemed to know it. My *only* regret is that I didn't realize this and *accept* it before she was gone. My only regret. Please understand that I know as well as anybody how hard it is to *not try* when it comes to potential treatments, etc., and please also know my lady could never walk by me w/out getting kissed and what-not (since day one, way before BC)...Yet, I guess what I'm trying to say is this: There's only so much one can do. When it's time, it's time. So, make sure you remember to do "nothing" once in a while (eg: make her some popcorn, rub her feet, kiss the back of her neck, listen when she speaks, hold her, stop thinking and worrying for a minute and be thankful you still have her and let her know so, etc.) Anyway, best wishes to you all. And though I'm devastated beyond words, and will never be "OK" and wouldn't be upset at all if I were hit by a bus anytime soon, I have a very vocal 14-year-old cat to take care of, and most importantly, I've got ten years of absolute l-o-v-e that my wife and I shared, which I'll carry to my grave... Thank you. > Originally sent via web-based b.c. mailing list: > [quoted text clipped - 78 lines] > > Thank you. Johnny , My thoughts are with you ,and many thanks for sharing your thoughts today . There is nothing that I can say or do to make you feel any better right now , but please know that you are in my prayers . Peter . > Originally sent via web-based b.c. mailing list: > [quoted text clipped - 78 lines] > > Thank you. Dear Johnny, I am so sorry to learn of your loss and I also want to thank you for sharing your words. Somehow, despite your pain, you have struck the nail completely on the head and reading your words certainly struck a chord with me (I was the main carer for my husband who passed away with a GBM4 last year). It's such a shame that you have to go through this experience to realise that it truly is the little things in life that are the most important. Some words in return from me though. I know that you are completely devestated right now and life feels as though it has lost all meaning and you may well feel in the pits of despair, but that despair won't last for eternity. Gradually as the days/weeks/months go by and the numbness and shock wear off, you will begin to live again and be able to raise a smile once more. The memories of your beloved wife will bring joy rather than pain. I know this to be true as I have been there myself. I spent 20 yrs of my life with my man and although I am only 39 I couldn't see a future without him. But here I am, nearly 11 months later and whilst my life isn't full of limitless joy, it doesn't seem full of pain and despair either. For now, I hope you find peace and offer you a Hug. Alayne > She knew it. Her MD knew it. Everyone but me seemed to know it. > My *only* regret is that I didn't realize this and *accept* [quoted text clipped - 13 lines] > hold her, stop thinking and worrying for a minute > and be thankful you still have her and let her know so, etc.) There comes a time, when the plane is wheels-down over the runway threshold, to quit trying to fly it and commit to a landing. Switch off the stall alarm, pull back and flare out. It makes a much more graceful landing than gliding straight into the ground. I was grateful to the hospice consultant for telling me when to let go and change from keeping my wife alive to letting her die comfortably. After so long "flying the plane" (tuning her drug dosages, keeping her hydrated, etc) it came as a slight surprise. I think I needed the "permission" to let go. Tim Jackson > > She knew it. Her MD knew it. Everyone but me seemed to know it. > > My *only* regret is that I didn't realize this and *accept* [quoted text clipped - 19 lines] > > Tim Jackson Tim, I know where you are coming from too! The most selfless act of love that we can ever offer is to let our beloved's go. It's our own personal battle with the head and the heart and sometimes it takes a while to register what the eyes are really seeing. How are you doing? Hugs Alayne > > There comes a time, when the plane is wheels-down over the runway > threshold, [quoted text clipped - 17 lines] > go. It's our own personal battle with the head and the heart and sometimes > it takes a while to register what the eyes are really seeing. Yes, I think thats true. We get fixated on life. > How are you doing? Um, fine. Never look back, there's too much around and in front to spend much time dwelling on the past. Life goes on, centred around our wonderful daughter, now 10. Lots of things are easier when you are in total control (like balancing credit cards), but I do miss the company and the challenges. Tim > > Tim, I know where you are coming from too! > > [quoted text clipped - 14 lines] > > Tim Sounds like you deem the cup to be half full rather than half empty too!! Yep, life does indeed go on. How is your daughter? I have two myself (12 and 9) and they are both remarkable at how they have adapted. My youngest Nikki has just made Tony a birthday card (for the 14th of this month) so he still lurks there in her mind. Yep, the total control aspect is a novelty. There's some things I still miss like when the mechanical/technical stuff break down on me, but there again I never have to put the loo seat down anymore....!! <g> You can always pop in here for company Tim??? Hugs Alayne > Sounds like you deem the cup to be half full rather than half empty too!! Oh sure. At least half full. Allowing for statistical uncertainty it has a reasonable chance of being as much as three quarters full. > Yep, life does indeed go on. How is your daughter? I have two myself (12 > and 9) and they are both remarkable at how they have adapted. My youngest > Nikki has just made Tony a birthday card (for the 14th of this month) so he > still lurks there in her mind. I do believe kids are incredibly resilient, but take their lead from the adults around them. I've pontificated on this subject before (eg. http://www.cancersupporters.com/kids.html). I strongly believe in the value of open and confident leadership, if you can pull it off, and in this case it seems to have worked fine. She talks about it occasionally, without displays of emotion, she does well at school, usually around top of her class, she's probably the most popular girl in the class, and she looks out for people I might be interested in marrying (and understands the limitations). On the other hand her friend who lost her grandmother a couple of years later was, according to her mother, still mourning 12 months later. I'm sure parental expectations and insecurity had a lot to do with it. > Yep, the total control aspect is a novelty. There's some things I still > miss like when the mechanical/technical stuff break down on me, but there > again I never have to put the loo seat down anymore....!! <g> Apart from the obvious like only having a pillow to hug, mostly I miss not being able to be in two places at once. Like taking a parcel delivery and being out working. And there are a lot less hours in the day these days - cooking, shopping, cleaning and the other rituals fragment the time badly. > You can always pop in here for company Tim??? a.s.c.? Ooh that's a big place for a "bear of very little brain" to cope with. I do look in occasionally, although I feel I should be backing away from cancer, not getting more involved. Always open to email though if you fancy a chat. Tim For everyone facing death of a loved one, I'd like to share this URL that I got from this group (alt.support.cancer) several weeks ago. Short history: I have SCLC. Diagnosed one year ago. Chemo and RT got it the first time around, but in Jan we found brain mets. Whole brain radiation got the mets, but it is just a matter of time before it returns somewhere in my 61 yr. old body. IMHO http://crossingthecreek.com/guts.htm is a page that should be read and re-read by all of us to prepare for the inevitable.  SignatureBeware of the panacea peddlers: Just because you wind up naked doesn't make you an emperor. Bob In Carmel, CA > > Sounds like you deem the cup to be half full rather than half empty too!! > > [quoted text clipped - 16 lines] > for people I might be interested in marrying (and understands the > limitations). That was an interesting read Tim and spot on too. We were incredibly honest and open with our two right from the very beginning. I even recall my eldest Kelly having a go at me in the very beginning when she heard something I was saying over the phone that I did not tell her previously. She told me there and then that she wanted to know everything so that was indeed how we handled it. I think that they both fared well because I too am of a strong character and met every challenge that we faced full on. It was also interesting to read about the cloud. We always said that Tony was going to be a star and would look down upon them. This actually was at the same time that Mars put in an appearance and Nikki practically freaked when we said it was Daddy. In her words "how come something I made up has come true"!! So we then had to undo the star business....!! > On the other hand her friend who lost her grandmother a couple of years > later was, according to her mother, still mourning 12 months later. I'm [quoted text clipped - 8 lines] > being out working. And there are a lot less hours in the day these days - > cooking, shopping, cleaning and the other rituals fragment the time badly. The hardest for me is trying to be two people, namely the good guy and the bad guy. As a mum I was always the soft touch over daddy but now I am also the discipline enforcer too!! I think that it was probably toughest on Kelly because a week after Tony died she also had to start secondary school which is a challenge in itself. When Tony first died the girls commented that I had had a "personality change", I think what they were getting at is that life had returned to normal and was no longer the stress zone that it used to be (they had just spent practically all of the school holidays at the hospice) and family life was very much centred around Tony. It is only on reflection that you realise just what an impact living with someone so poorly has on your daily life. > > You can always pop in here for company Tim??? > > > a.s.c.? Ooh that's a big place for a "bear of very little brain" to cope > with. I do look in occasionally, although I feel I should be backing away > from cancer, not getting more involved. Always open to email though if you > fancy a chat. I understand your not wanting to be too involved in the cancer world, a part of me wants to back away too, but another part also wants to help others, probably trying to compensate for not being able to totally help Tony... If you want an off-line chat, you know my name, plus an r and I use ntl, which is a world and then a dot com Perhaps we can discuss issues that face single parents too <g> > Tim Hugs Alayne >Originally sent via web-based b.c. mailing list: Johnny, Your words are heard loud and clear, man. And wow, we can feel the pain in your message, but I know what we're feeling is nothing compared to what it's like for you. I don't know what else to say. My thoughts go out to you in this time. -- "Even as a survivor I'm still fighting cancer!" Larry @ www.gotCancer.org I've regretfully cut the whole of this post because I didn't know which part was the most telling, each paragraph was special and said so much, the whole expressed every emotion I can think of. It was beautiful, thank you. I think that we all need reminding from time to time about such important things. I often try to imagine how I'll be if Spouse dies before I do, how I'll care for him and, more selfishly, how I'll cope. This ng has given me some insight from those who have not only experienced the event but who have very courageously told us about it. We need to know. My sadness is that I know that if I die before Spouse he won't have an inkling of what to do or how to ease my going - he'd want to but hasn't the imagination to understand the needs of the helpless. I'd have to ask and that's inappropriate and sometimes, I expect, impossible. There are parenting courses, retirement courses, financial courses, counselling for marriage, divorce, abortion and other life dramas. I think that preparation for helping loved ones to die is far more important than most of those. Too often it's handed over to professionals - or professional care is imposed on us. That's very sad because death is the only inevitable part of life, it defines our life, it's what life is preparing for. I wish we could be better prepared, not just so that we can experience our own but so that we can give the most of ourselves to those we are losing. We give everything of ourselves at the drama of birth, at great expense to our own lives, I want to do the same at the other great drama of life. I hope I haven't offended anyone by this post ... Hugs to everyone, Mary > I've regretfully cut the whole of this post because I didn't know which part > was the most telling, each paragraph was special and said so much, the whole [quoted text clipped - 29 lines] > > Mary Hello Mary, Your words are very meaingful too. I think the trouble is that dying is such an unspoken area and no-one wants to delve into the topic, understandably. Having experienced the death of my husband I still find it incredibly difficult to fully express, so that it is understandable for others, the feelings and emotions that I went through. There is no rule book and there is no manual on how to handle each situation. We all think that we couldn't possibly cope if we were faced with the same situation, but we all can and we all do. Sometimes the fear of the unknown is far greater than the reality. If I have learnt anything from losing my husband it is quite simply that I no longer fear death. In my husband's case it was not the physically painful scenario that I had imagined it would be. It was emotionally painful for me but at the same time there was also a feeling of peace that he was no longer suffering and battling against the inevitable. The pain that does linger is that of loss. Losing someone is something that we will all experience in our lives and perhaps if it was spoken about more often, more fears would be allayed. But then cancer is also still a word that no-one wishes to speak either. Hugs to you Mary Alayne > I think the trouble is that dying is > such an unspoken area and no-one wants to delve into the topic, > understandably. Yes, I'd like to see more about it on this ng for a start. I've valued all the accounts others have shared with us, they're probably the most supportive part of our ring of friendship. > Having experienced the death of my husband I still find it incredibly > difficult to fully express, so that it is understandable for others, the > feelings and emotions that I went through. I'm sure that the emotions are the most difficult part of it but I was thinking more of the practical aspects - Johnny talked about rubbing feet - such a simple act but so full of meaning and love and so very comforting to the dying. Small but loving acts are possible the ones which don't occur to us at the time, I'd like to know more about what those sharing the experience have done. > There is no rule book and there > is no manual on how to handle each situation. No - but I'm reminded by this that a few years ago I bought a book: The Natural Way of Death (I think) which, while not being a manual, was inspiring in many ways. I think I'll re-read it. It sounds like a hippie treatise but it isn't. > We all think that we couldn't > possibly cope if we were faced with the same situation, but we all can and > we all do. We have no choice ... > If I have learnt anything from losing my husband it is quite simply that I > no longer fear death. In my husband's case it was not the physically > painful scenario that I had imagined it would be. It was emotionally > painful for me but at the same time there was also a feeling of peace that > he was no longer suffering and battling against the inevitable. That's how it should be - I believe. The imposition of technology, dragging back the dying, is an abomination. My father-in-law (who I didn't much like) was roused from his declining with drips and injections and various noisy machinery. I was furious, a very old, very sick man should have been able to let go in peace. His first words after that were, "I was nearly there" and I've not forgotten that. I was reminded of his going by the 'rubbing feet' reference, Bernard's feet were covered in painful hard skin, his toenails like twisted horns, he hadn't been able to reach them for years. I bought some moisturiser from the hospital shop and sat at the end of his bed working it into his feet for two hours at a time, every day, while my husband shaved him and sat with him. A large amount of scaly hard, ancient, skin came free and his feet became soft and easy. They became clean and I trimmed his nails. I thought that he didn't know it was happening. Another son visited him and asked his father how he was, "I'm a lot better now that Mary has done my feet" was the answer. I was amazed, he didn't like me either :-) When Spouse had a hip replacement two years ago I did the same for him, although he wasn't dying of course. He's never been able to reach his feet easily but in the previous few years it had become almost impossible because of his pain. He never allowed me to touch his feet because of sensitivity but I insisted while he was bedbound and he had no choice. Every day after that he asked me to do it, he said how comforting it was. I sound as though I'm an advocate of foot therapy, I'm not a fanatic, those are the only times I've done it, I'm not an expert either. The memories were revived by Johnny's comment. But I do believe that there are things a loving carer can do which will comfort patients (and make them feel that they are really helping to ease a situation) and yet aren't really thought about and that's the sort of thing I'd like to see discussed. What are other people's experiences? I know that chiropody and massage and other procedures are offered in hospitals but when they're delivered by professionals it's not like our doing it. There are limits of time and the carer is deprived of the experience. Just because we're not experts doesn't mean that we can't have the same - or a better - effect. > Losing someone is something that we will all experience in our lives and > perhaps if it was spoken about more often, more fears would be allayed. But > then cancer is also still a word that no-one wishes to speak either. That's still true, which is why I mention cancer very frequently, I try to drop it into conversations to show that it IS an acceptable topic of conversation. I suspect that everyone here does the same :-) I also subscribe to an epilepsy support ng and the same anger about other people's attitudes are frequent topics. Perhaps it's the same with other 'unmentionable' conditions, I don't know, I rarely hear about them! Mary > > There is no rule book and there > > is no manual on how to handle each situation. [quoted text clipped - 3 lines] > inspiring in many ways. I think I'll re-read it. It sounds like a hippie > treatise but it isn't. When Lyudmila was dying an elderly green-orientated friend sent us a long bibliography of books on death and related subjects, with a note that he understood would be difficult, maybe impossible, to use it at this time. Of course it was, for me there was no time for reading, and for her, well, it was not what she wanted to hear. As per his instructions in this eventuality, I filed it away for future reference. Maybe I should look at it again. > I was reminded of his going by the 'rubbing feet' reference, Bernard's feet > were covered in painful hard skin, his toenails like twisted horns, he [quoted text clipped - 8 lines] > now that Mary has done my feet" was the answer. I was amazed, he didn't like > me either :-) Maybe there is something in Reflexology after all. Luydmila greatly appreciated the reflexologist that the NHS offered her as a complementary therapy. The woman came weekly and massaged her feet while chatting to her. She was a mature, intelligent and wise woman, and I'm sure the intelligent conversation was the main benefit to my bedrdden wife, but I daresay the relaxation from having her feet massaged also helped. Tim > > > There is no rule book and there > > > is no manual on how to handle each situation. [quoted text clipped - 11 lines] > eventuality, I filed it away for future reference. Maybe I should look at > it again. Perhaps it might be useful to put it on the website. ... > > "I'm a lot better > > now that Mary has done my feet" > > > Maybe there is something in Reflexology after all. Oh, I wasn't practising reflexology! I was merely stroking with the lubrication of the lotion. It loosened the hard skin of years, I didn't apply any pressure. It did take a long time but - and this is the crux - I felt that I was doing something rther than just sitting holding his hand. > Luydmila greatly > appreciated the reflexologist that the NHS offered her as a complementary > therapy. The woman came weekly and massaged her feet while chatting to her. > She was a mature, intelligent and wise woman, and I'm sure the intelligent > conversation was the main benefit to my bedrdden wife, but I daresay the > relaxation from having her feet massaged also helped. I'm sure it did but I believe that it would be even more beneficial for *both* parties if that sort of action were undertaken by the immediate carer, wife, husband, son, whoever. You probably didn't think about it, few of us would. Johnny did and his post prompted me to suggest that there are lots of things WE can do at such times, either instead of or as well as professionals, and I'd like to hear more suggestions. Mary > Tim > > Maybe there is something in Reflexology after all. > > Oh, I wasn't practising reflexology! No indeed, but perhaps this is the way reflexology helps. I always thought it was mumbo-jumbo, but now I wonder if it is tapping into something else. > > Luydmila greatly > > appreciated the reflexologist that the NHS offered her as a complementary [quoted text clipped - 7 lines] > *both* parties if that sort of action were undertaken by the immediate > carer, wife, husband, son, whoever. Well, we did massages, not feet admittedly, and we did long chats, but the point was having someone outside, whose thoughts, views and attitudes were new, not the well-trodden and discussed-to-death ones of a spouse. Tim > Having experienced the death of my husband I still find it incredibly > difficult to fully express, so that it is understandable for others, the > feelings and emotions that I went through. There is no rule book and there > is no manual on how to handle each situation. I hope that by voicing our experiences here on Usenet we are helping to write the rule book. Or rewrite: I heard a historian say that we (UK at least) threw away that rule book after WW1. I'm not sure about that. What I have seen written elsewhere seems to be from a very narrow viewpoint which doesn't relate to my experiences very much, and not as much as other people's experiences here do, which leads me to suspect that either the authors are writing from a theoretical viewpoint, or are describing what they thought they ought to have felt. For example I and others did not feel an overwhelming grief at the end, but more a sense of relief, that our own stress was over, and that the loved one's pain was over. By this time most of the 'classic' grieving was already over, we had already long come to terms with what was going to happen. Shortly after bereavement I spoke to a widow who, like me, had married fairly late in life and had also been widowed after eight years of marriage. We both noticed the 'ox-bow lake' effect that memories of marriage seemed to get shunted into a side loop of the stream of conciousness, the times before and after joining together fairly seamlessly. As if the marriage had happened to someone else. Most literature seems to be based on an idealised sugar-sweet loving relationship, not a real rough-and-smooth marriage with real tensions. This make us feel guilty that our love may not have been perfect. We weren't perfect, but we were committed. We had rows, fights, short term walkings-out even. We also worked hard at overcoming the problems. Towards the end she accused me of conspiring with the doctors to kill her. The pressures of caring, working, coping sometimes felt like a prison sentence, and I don't deny planning for what I was going to do when I got out, and obviously those things didn't involve her. There were parts of the relationship that I was glad to lose. But now I am sure, these things are normal, not some dirty little secret to be hidden in a closet. > Sometimes the fear of the unknown is far greater than the > reality. The is never anything so scary as your imagination. Remember that if you keep things from the kids to 'protect' them. > If I have learnt anything from losing my husband it is quite simply that I > no longer fear death. Once you have walked a while with the Grim Reaper you come to realise he is qiute a nice chap and not to be feared. This to some extent is what binds us, here. We have all one way or another looked death in the face. > Losing someone is something that we will all experience in our lives and > perhaps if it was spoken about more often, more fears would be allayed. But > then cancer is also still a word that no-one wishes to speak either. I think for the very reason of the taboo of death. I hope that today's children are given more education on the subject than we were, and that it is not swept under the carpet so much. I mentioned this to the headmaster of my daughter's primary school (where I am also a governor) and he assures me that they do now have lessons on death. I suspect though that they are not the sort of lessons -we- might have in mind. We'll see. For I believe that it is with children that this matters. Learning mortality is part of growing up, but these days it is a part most of us defer until we reach our 50's, and many find it uncomfortable to start learning something new at that age. If we can be open with our children about it then they will not grow up fearing the unknown. Tim Jackson > > Having experienced the death of my husband I still find it incredibly > > difficult to fully express, so that it is understandable for others, the [quoted text clipped - 69 lines] > learning something new at that age. If we can be open with our children > about it then they will not grow up fearing the unknown. What a wonderful post - no more than what I'd expect from that stable though :-) I want to reply to several points, individually, perhaps I'll put it in my folder and mull it over. Thanks, Tim. > Tim Jackson > > Having experienced the death of my husband I still find it incredibly > > difficult to fully express, so that it is understandable for others, the [quoted text clipped - 71 lines] > > Tim Jackson I couldn't have put it better myself!! Hugs Alayne >> Having experienced the death of my husband I still find it incredibly >> difficult to fully express, so that it is understandable for others, the [quoted text clipped - 17 lines] >already over, we had already long come to terms with what was going to >happen. Alhough I always held out hope (always), thanks to her unknowingly shaking the cynic out of me over the years, the idea that she isn't in pain anymore is the greatest asset I have when it comes to me viewing her death as it really was. The systematic shutting down of her body. Her almost anticipatory acceptance of its pending arrival. Me during Day 1 in the hospital, still trying to perk her up and keep her going. Me during Day 5 telling her "I love you" over and over again and that it's "OK to go now, just go to sleep, sweetie..." And she did. Her death, outside of the initial seizure that she didn't remember, was something she earned, the right to go on her own, the right to say, "Thanks, anyway...I've had enough." It's this more than anything, and the often mind-blowing wisdom of loved ones and others and people like all of you that help me get through another day. Io think that after nearly a decade of every imaginable procedure/treatment/surgery/appt/test/etc, and her getting through all of it, though always w/ some form of lingering damage, that she won't have to wake up feeling *wrong* ever again...it's because of this, which surprises me, that I'm able to find peace amongst the tears and comfort myself with an almost joyous relief in her being free of living hurt. And every day that passes, I can clearly now how much she struggled and how often something new came up. But no more. Yet, I miss everything about her. And it seems I'm growing sadder by the week, now back at work after almost a month, doing laundry, paying bills, getting parking tickets, life goes on, right? Hardly. -- re: Bliss-filled Romance? Being both stubborn, vocal and strong-willed, we argued, quabbled, bitched, snapped at each other w/ the best of them. Though it never affected the bottom line. We loved each other, man. Neither of us necessarily wanted "love" when we met, but after a few rocky months, too much tequila and plenty of baggage between us, boom...life was beautiful...and it was...and then, boom, we're in a waiting room: "It's malignant. And you don't have insurance, eh?" Hell, our ten years together felt like thirty and out of those thirty we had some good times...Or something like that. ;) -- re: One in a Million... What I hate? What I really hate is something I have to get off my chest and it might as well be here and I hear it so often I begin grinding my teeth the moment I realize it's coming: AVERAGE GUY (any age): "Damn...I could *never* do what you're doing. Sticking by her like that...You're a better man than me. I don't know how you do it, you're like a saint or something." I've heard it at work 3 times this week alone and it's usually accompanied by an almost patronizing tone, like: "you poor son-of-a-bitch..." Ironically, I've never really thought about me doing what I've done, especially not as an "option"... We had just fallen for one another, and you wake up, and this person you love suddenly has cancer and all I've ever thought about is helping to make her better, and dammit, we did so many a time and we did so because of her strength and my love of her, wanting to "reward" her for being strong by doing anything I could. What's funny is how she hated the use of war analogies and what-not when it came to cancer patients: "According to the obits, every cancer patient who ever lived 'battled' their disease, and every one of them were courageous. I don't see it like war, or like I'm fighting a battle...I mean, c'mon, not only do I not know who I'm fighting, but I don't even know what their uniforms look like. And if courage is me doing what I have to do to make it to the bathroom in the morning -- without incident -- then 'courage' has been way overblown." (my lady, at lunch one day, on her friend's home video, circa '98) I guess, the reason the above Average Guy comment saddens me is because it's almost always uttered by someone I don't expect it from (always spoken quite loosely, like a kid deciding as a teen that he'd rather kill himself instead of spending life as a "cripple" were it to come to that...) It bothers me because before all this happened, I was all about me, how I was doing, and where I was going. (Nowhere really.) Then, hell, I met her, we both just knew, and sure enough. Us. And yet, for her? I would've done anything. And often did. I don't know, hearing talk like that, and I tend to lose a little more faith in mankind, probably because I've regrettably been told time and again from MDs over the years how many really do desert those they "love" at the times when they need them the most and then when I hear -- too often -- from those around me, whose careers, whose time and/or whose unwillingness to care for a "loved one" come first? I can only hope they're underestimating themselves, or something. Something. (Thanks. I needed to say that. And thanks to each you who responded; all of your words helped; and I wish you all the best.) Until next time. Johnny Los Angeles, CA. johnjohn_la@yahoo.com > What I hate? What I really hate is something I have to get off my > chest and it might as well be here and I hear it so often I begin [quoted text clipped - 4 lines] > that...You're a better man than me. I don't know how you do it, you're > like a saint or something." And is "average guy" married? And did he say "in sickness and in health"? And did he lie? Read the small print before signing, godammit! It seems some of us don't do marriage these days, just convenience realtionships. Like the girl I was engaged to in my yuppie days and dropped because she could only say "For better or 10% worse" Y'know, I got called a saint for keeping my wife's son, when he went through a bad patch at around 20. Hell, he'd been my kid since he was 11, I wasn't about to walk away from that. And psychologically he was a push-over compared to his mum, he duly came around after a while. > "According to the obits, every cancer patient who > ever lived 'battled' their disease, and every one of them were > courageous. " I saw the cancer patient as the battlefield, not as the warrior. > And yet, for her? I would've done anything. And often did. I don't > know, hearing talk like that, and I tend to lose a little more > faith in mankind, I will go on believing that this isn't Mr Average Guy, it's Mr Average Mouth. The only ones you hear are the ones that speak out, usually unthinkingly. The silent majority is with you. Tim Jackson >> What I hate? What I really hate is something I have to get off my >> chest and it might as well be here and I hear it so often I begin [quoted text clipped - 32 lines] >Mouth. The only ones you hear are the ones that speak out, usually >unthinkingly. The silent majority is with you. Tim, it's 6:45 a.m. here in L.A. and though I haven't slept a wink, you just did what I alluded to in the previous post and which I'm quoting below...And for that, I thank you. >It's this more than anything, and the often mind-blowing wisdom of >loved ones and others and people like all of you that help me get >through another day. Johnny Johnny Have you been checking the newsgroups recently? You really started something. Your thread is still going, and must be just about making the all time record for thread size, at least as far as I can remember in alt.support.cancer.breast. It may have drifted a little from your original subject, but it obvious struck a chord with what several people wanted to say, but hadn't thought to put into words. Tim Jackson > What's funny > is how she hated the use of war analogies and what-not when it came to [quoted text clipped - 3 lines] > battle...I mean, c'mon, not only do I not know who I'm fighting, but I > don't even know what their uniforms look like. This analogy to war is something I resent too. I refuse to use it of anyone and if anyone suggests any of the associated words to me I explain why they're wrong. Sometimes gently ... :-) Thanks for responding, Johnny, Mary ... >Alhough I always held out hope (always), thanks to her unknowingly >shaking the cynic out of me over the years, the idea that she isn't in [quoted text clipped - 23 lines] >the week, now back at work after almost a month, doing laundry, paying >bills, getting parking tickets, life goes on, right? Hardly. Of course it doesn't. I lost my own wife to cancer 18 months ago - at first I was numb, having worn myself out caring for her. But I felt only relief when her body finally shut down, as I'd already gradually lost her to Alzheimer disease over the preceding 5 years. Now I feel there's as a hole in my life where she used to be. The edges of the hole become less sharp and jagged with time - but it's always going to be there. Maybe, one day, that hole will become just a natural part of the scenery but until then it still hurts like hell when I look at it, whenever I want to share something funny with her, whenever I think I see her across the street. We all grieve in different ways - but since time seems to work for everyone else, I just hope it will work for us. > re: One in a Million... > [quoted text clipped - 11 lines] > son-of-a-bitch..." Ironically, I've never really thought about me > doing what I've done, especially not as an "option"... These are people who know nothing about love. *Nothing*. So who's the "poor son-of-a-bitch", then? <quoted out of order> > Yet, I miss everything about her. And it seems I'm growing sadder by > the week, now back at work after almost a month, doing laundry, paying > bills, getting parking tickets, life goes on, right? Hardly. It does, though. Just not yet. Heartfelt sympathy, Johnny. Ann T. (Lost 45 y/o best fried & husband of 20 years to esophageal cancer in 1998) Remove 'dontsendspam' to reply by email >> re: One in a Million... >> [quoted text clipped - 24 lines] > >Heartfelt sympathy, Johnny. Nicely said, Anne. I've often thought that some women who get a poor prognosis would be better off if their husbands just took off rather than adding to their problems. - Tony Love & Light Tony Lima > What I have seen written elsewhere seems to be from a very narrow viewpoint > which doesn't relate to my experiences very much, and not as much as other > people's experiences here do, which leads me to suspect that either the > authors are writing from a theoretical viewpoint, or are describing what > they thought they ought to have felt. In this case, as others, we are all so very individual, but I tend to agree with you. My gut told me that others would be discomfited or horrified if I admitted some of my feelings, so I kept them to myself. Forgiving the authors somewhat, it's easy to fall back on the conventions as a comfort in themselves, vs. the rough work of finding words for the hard thoughts that no one really wants to hear . . . the kind of thoughts we're sharing in this thread. The real thoughts seem scary, until you learn their internal logic first-hand. They comfort no one, who hasn't been there. > For example I and others did not feel an overwhelming grief at the end, but > more a sense of relief, that our own stress was over, and that the loved > one's pain was over. By this time most of the 'classic' grieving was > already over, we had already long come to terms with what was going to > happen. At first, the way I felt made me think of the scene near the end of "2001: A Space Odyssey" where the aging astronaut is eating all alone, with the mundane sounds shockingly loud in the emptiness. I rushed to be back at work, to do "normal" things, in order to fill bleak time . . . made myself talk & laugh, though that was a mask. I felt numb, so if I was going to paste some expression on my vacant face, it might as well be a smile. People around me thought I didn't care, wasn't affected. Later, there was survivor's guilt; a deep sense of loss of (say) the other half of all our inside jokes, and other experience only we shared -- pieces of myself gone. For many months, if I heard something interesting, I could feel myself trying to remember to tell Ken. I never wanted anything so much in my life as to have been able to change his fate . . . for his sake, and that of others who valued him, not so much for myself. Eventually, the silence slowly thawed, and life began to flow back in. Nothing ever fills the hole, but a new phase of life fills in around it. Yet I'm sitting here crying just thinking these things through again, almost 6 years on. It never *disappears*, just gets smaller in the rear-view mirror. Ann T. Remove 'dontsendspam' from address to reply by email > > What I have seen written elsewhere seems to be from a very narrow viewpoint > > which doesn't relate to my experiences very much, and not as much as other [quoted text clipped - 47 lines] > Ann T. > Remove 'dontsendspam' from address to reply by email This really is a good thread. It's a bit bizarre how others have experienced the same emotions and yet I have not seen them particularly expressed before. It seems that no-one has particularly touched on the relief aspect at all. At the end of the day, there is an intense amount of pressure put upon us (willingly though), that it is no wonder that we feel at least some depth of relief, although it seems to be almost shameful to admit it. To my mind, I started my grieving on the day of my husband's diagnosis which obviously intensified when he died. But somehow I felt within myself that I was not "grieving enough" in a way, and that I was almost waiting for the day that I would finally lose it completely, almost as though it was bound to be around the corner. I am sure that this was compounded by the things that people around me said to me. I felt no guilt at the occasion, but due to the nature of my husband's funeral, I danced in the aisle at the crematorium and laughed but once I was home I certainly felt "guilt" as to what other people may have thought of my actions. I went straight back to work too Ann, and just a week after Tony's funeral I was working at our bike rally. I can recall it clearly now, it felt that there were a hundred eyes watching my every move, every smile on my face. But I was only doing what it felt right for me to do but still justified myself to myself at the time. At the end of the day every feeling and emotion that we experience must surely be a natural one, it's not something that we get up in the morning and choose to do where the fault lays really is with those that have no depth of the experience and therefore only assume what a person should be doing/saying. Hugs Alayne p.s. I like your closing paragraph. > I felt no guilt at the occasion, but due to the nature of my husband's > funeral, I danced in the aisle at the crematorium and laughed but once I was > home I certainly felt "guilt" as to what other people may have thought of my > actions. The following comment isn't really connected with the thread but dancing at my funeral is going to be compulsory - among other rites. It was decided years ago when a friend and I made a pact to conduct each other's funerals according to survival and agreed to dance at them Mary >> I felt no guilt at the occasion, but due to the nature of my husband's >> funeral, I danced in the aisle at the crematorium and laughed but once I [quoted text clipped - 7 lines] >years ago when a friend and I made a pact to conduct each other's funerals >according to survival and agreed to dance at them That's a great idea. A funeral should try to remember of a person's *whole life, not just the end of it. > >> I felt no guilt at the occasion, but due to the nature of my husband's > >> funeral, I danced in the aisle at the crematorium and laughed but once I [quoted text clipped - 11 lines] > A funeral should try to remember of a person's *whole life, > not just the end of it. It depends on a persons nature and personality but to me a funeral should be more a "celebration of life" rather than a "mourning of death". I knew Tony very well, obviously, and therefore was able to fine tune the funeral towards his character. One of Tony's wishes was that he went to the funeral "in the back of his mate's van" (he didn't want me wasting money on black cars etc.), well as it turns out, due to health & safety would you believe, I was unable to do this. Instead he went in the back of the funeral directors van. The service was done by a Humanist Minister and although I chose the music to be played, I knew it would be to Tony's liking. Okay I heard one or two gasps in the audience when a track by Kevin Wilson appeared but that was swiftly followed by laughter (I think the gasps were that they had not heard anything like it at a crem. before). And yes, we danced in the aisles with smiles on our faces. It was so what he would have wanted. I even had people "thank" me for a pleasant day. We all dreaded it, we all wept a few tears but we all remembered Tony as the kinda guy that he was. When Tony was ill and we were discussing his funeral it was amazing that simple fact had on others. They began to talk about what they would like at their own, and believe me if everyone left instructions, it would make those left behind lives a lot easier. Hugs Alayne > It depends on a persons nature and personality but to me a funeral should be > more a "celebration of life" rather than a "mourning of death". I knew Tony [quoted text clipped - 19 lines] > their own, and believe me if everyone left instructions, it would make those > left behind lives a lot easier. One of my best friends asked for Queen's "Another one bites the dust" to be played at his funeral. However the powers that be (his wife and her family) decided funerals are really for the living, not for the dead and changed it to "You're my best friend". I'm sure he would have preferred to be taken to the crem. in his mate's van too, or in the back even his own 4x4 pickup, with his dogs. It is probably as well that some of our worst excesses are curbed. I had threatened to inscribe on my wife's gravestone "Gone to complain to a Higher Authority" but was in the event persuaded on a Russian text equivalent to our RIP. For my own I would have "Game over. Press Reset." Tim > One of my best friends asked for Queen's "Another one bites the dust" to be > played at his funeral. However the powers that be (his wife and her family) [quoted text clipped - 9 lines] > > Tim Well, I did curb things slightly. Going back to Queen, I would have preferred to use "I'm Going Slightly Mad" but even for me I considered this would be poor taste because Tony had a brain tumour. It would have so been our humour but not the rest. He did think that playing "goodness, gracious great balls of fire" during his committal or having his taped voice saying "bloody hell it's hot in here" would have been a nice touch, but again, I did have to be slightly repectful! Hugs Alayne > It depends on a persons nature and personality but to me a funeral should be > more a "celebration of life" rather than a "mourning of death". I knew Tony > very well, obviously, and therefore was able to fine tune the funeral > towards his character. In this I find the Russian Orthodox tradition sensible. They mourn the death on the day of the funeral, then 40 days later they celebrate the deceased's soul passing to heaven. This way you can both mourn the death and celebrate the life without the two coming into conflict. I always felt a little jealous of Russian Orthodox immigrants living in western countries, they get to celebrate two Christmases and two New years (due to using an 'uncorrected' calendar), and can more or less avoid sobriety for the entire winter holiday. Tim > One of Tony's wishes was that he went to the funeral "in the back of his > mate's van" (he didn't want me wasting money on black cars etc.), well as it > turns out, due to health & safety would you believe, I was unable to do > this. WHAT???? That's disgraceful. But how could it be stopped? When my mother in law died I suggested that her four grandsons and two sons could carry her coffin, as their last act of love, instead of strangers. They said they'd like to. I told the undertakers who said it wasn't allowed, that it would look silly, that they'd walk like penguins. That was insulting, one is a serving member of the Royal Air Force, two others have been in HM Forces, the others are intelligent and easily able to understand what to do. Instead of arguing I said that it would happen. It happened. A daughter is a very fine cabinet maker and wanted to make a special casket for her grandma's ashes. The undertaker objected to that and said it was the rule that their plastic moulded casket was used. I said that the oak one would be made and used. It was. When father in law died they did the same, there was not objection from the undertaker when I telephoned and reminded them that it would happen again. > Instead he went in the back of the funeral directors van. The > service was done by a Humanist Minister and although I chose the music to be [quoted text clipped - 3 lines] > anything like it at a crem. before). And yes, we danced in the aisles with > smiles on our faces. It was so what he would have wanted. The older we get the more funerals we attend and I've noticed a relaxation in attitudes to the actual ceremony. This is very welcome. It's much harder to have the sheer guts to stand up to undertakers who naturally want to sell their goods/services and don't want people doing it themselves. Nevertheless, Spouse and I have made it clear to all our children and grandchildren what we want and, even if they don't 'celebrate' as we'd like, that no strangers (aka funeral directors) are to be involved at any stage. > I even had people "thank" me for a pleasant day. We all dreaded it, we all > wept a few tears but we all remembered Tony as the kinda guy that he was. Which is as it should be. > When Tony was ill and we were discussing his funeral it was amazing that > simple fact had on others. They began to talk about what they would like at > their own, and believe me if everyone left instructions, it would make those > left behind lives a lot easier. Indeed. Death shouldn't be a taboo subject any more than cancer should be. Thanks, Alayne. Mary > Hugs > > Alayne > Instead of arguing I said that it would happen. It happened. > > I said that the oak one would be made and used. > It was. The benefits of being omnipotent. <g> Tim > > Instead of arguing I said that it would happen. It happened. > > [quoted text clipped - 3 lines] > The benefits of being omnipotent. > <g> No, just determined not to be pushed about by people who only want to make money out of the (often) defenceless. I've spent a lot of time doing that on behalf of other people, these times it was for the family. What better cause? :-) Mary > Tim > > One of Tony's wishes was that he went to the funeral "in the back of his > > mate's van" (he didn't want me wasting money on black cars etc.), well as [quoted text clipped - 7 lines] > > But how could it be stopped? Perhaps I should clarify. The health & safety issue was more in connection with others loading and unloading the coffin. I could see this viewpoint considering that Tony was no light weight thanks to the steroids. > When my mother in law died I suggested that her four grandsons and two sons > could carry her coffin, as their last act of love, instead of strangers. [quoted text clipped - 5 lines] > > Instead of arguing I said that it would happen. It happened. It must depend on the funeral directors. We had no problem at all with best friends being the bearers. > A daughter is a very fine cabinet maker and wanted to make a special casket > for her grandma's ashes. The undertaker objected to that and said it was the > rule that their plastic moulded casket was used. I said that the oak one > would be made and used. > > It was. Again ditto. Tony's coffin was made of a fine wood which was then varnished to create a black look. My instructions were that it was to look as "flight case" as possible (relating to Tony's love of PA equipment). I also didn't make a wreath for him. Instead I used one of his flight cases to contain memorabilia that represented and reflected his life and his lifestyle. The contents included all sorts from microphones; a minature motorbike; a tiger teddy; a bag of jelly babies; a banana and a pot noodle. My point being that if you truly knew him then you would know the significance of all the items within. > When father in law died they did the same, there was not objection from the > undertaker when I telephoned and reminded them that it would happen again. [quoted text clipped - 19 lines] > as we'd like, that no strangers (aka funeral directors) are to be involved > at any stage. That's why I think that it is a good idea to prepare written instructions to confirm the true wishes of the deceased therefore leaving no room for argument or dispute. > > I even had people "thank" me for a pleasant day. We all dreaded it, we > all [quoted text clipped - 10 lines] > > Indeed. Death shouldn't be a taboo subject any more than cancer should be. Quite agree Mary, but always a difficult one to raise. Hugs Alayne > The health & safety issue was more in connection > with others loading and unloading the coffin. I could see this viewpoint > considering that Tony was no light weight thanks to the steroids. You can never find a fork-lift truck when you need one! Tim > > The health & safety issue was more in connection > > with others loading and unloading the coffin. I could see this viewpoint > > considering that Tony was no light weight thanks to the steroids. > > > You can never find a fork-lift truck when you need one! Spouse would have built some kind of crane. But then H&S inspectors might have been snooping incognito ... Mary > > The health & safety issue was more in connection > > with others loading and unloading the coffin. I could see this viewpoint [quoted text clipped - 3 lines] > > Tim Actually if he had truly had his entire wishes - we wouldn't have had the crematorium at all, his body would have been placed on a bonfire at the next rally... Alayne > > > One of Tony's wishes was that he went to the funeral "in the back of his > > > mate's van" (he didn't want me wasting money on black cars etc.), well [quoted text clipped - 8 lines] > with others loading and unloading the coffin. I could see this viewpoint > considering that Tony was no light weight thanks to the steroids. But the undertakers were immune from damage? > > When my mother in law died I suggested that her four grandsons and two > sons [quoted text clipped - 4 lines] > It must depend on the funeral directors. We had no problem at all with best > friends being the bearers. I think that could be true. and things ARE changing, too many people are being bolshie now! > Again ditto. Tony's coffin was made of a fine wood which was then varnished > to create a black look. My instructions were that it was to look as "flight > case" as possible (relating to Tony's love of PA equipment). :-) > [quoted text clipped - 4 lines] > My point being that if you truly knew him then you would know the > significance of all the items within. Wonderful. Having an interest in archaeology I recently asked Spouse what clothes he'd like to be buried in, just in case he ws dug up in the future. There's a choice of Roman, Viking, Mediaeval, Georgian, Victorian or late C20th. He said that since he spent so much time in it his boiler suit would be the most appropriate. > > Spouse and I have made it clear to all our > > children and grandchildren what we want and, even if they don't [quoted text clipped - 5 lines] > confirm the true wishes of the deceased therefore leaving no room for > argument or dispute. Indeed. > > Death shouldn't be a taboo subject any more than cancer should be. > > Quite agree Mary, but always a difficult one to raise. That's another reason for being grateful to Johnny. I wonder if he's still around? > Hugs And to all, Mary > > Perhaps I should clarify. The health & safety issue was more in > connection > > with others loading and unloading the coffin. I could see this viewpoint > > considering that Tony was no light weight thanks to the steroids. > > But the undertakers were immune from damage? No, it was the van that they use for the "collections" and therefore adapted to carry coffins. > > > When my mother in law died I suggested that her four grandsons and two > > sons [quoted text clipped - 8 lines] > I think that could be true. and things ARE changing, too many people are > being bolshie now! And quite rightly so, we prepare for the arrival of a baby, we prepare for a wedding, we should also "prepare" for a funeral. > > Again ditto. Tony's coffin was made of a fine wood which was then > varnished [quoted text clipped - 18 lines] > C20th. He said that since he spent so much time in it his boiler suit would > be the most appropriate. That would be interesting if he were dressed as a Roman, Viking etc. but it would have to be an open coffin for the full benefit. Tony was dressed in his club sweatshirt and camouflage trousers. I recall Nikki peering underneath the velvet cover that was laid across when we went to view him (at her request) to make sure that they had put his boots on!! > > > Spouse and I have made it clear to all our > > > children and grandchildren what we want and, even if they don't [quoted text clipped - 16 lines] > That's another reason for being grateful to Johnny. I wonder if he's still > around? I hope so and I also hope that others have had some spirits raised if they have been ear-wigging. > > Hugs > > And to all, > > Mary > No, it was the van that they use for the "collections" and therefore adapted > to carry coffins. I remember as possibly apocryphal story about an undertaking company giving up and having to sell their hearse. No-one would buy it until they advertised it as "A Rolls Royce delivery vehicle". I'd have bought it if I'd a) known and b) could afford it. > And quite rightly so, we prepare for the arrival of a baby, we prepare for a > wedding, we should also "prepare" for a funeral. I couldn't agree more. They have a lot in common. > > Having an interest in archaeology I recently asked Spouse what > > clothes he'd like to be buried in, just in case he was dug up in the future > . > > There's a choice of Roman, Viking, Mediaeval, Georgian, Victorian or late [quoted text clipped - 4 lines] > That would be interesting if he were dressed as a Roman, Viking etc. but it > would have to be an open coffin for the full benefit. Oh no, it was for the benefit of the Future! > Tony was dressed in his club sweatshirt and camouflage trousers. I recall > Nikki peering underneath the velvet cover that was laid across when we went > to view him (at her request) to make sure that they had put his boots on!! I intend having just a winding sheet. > I hope so and I also hope that others have had some spirits raised if they > have been ear-wigging. Or that they haven't been affronted ... Mary . The > service was done by a Humanist Minister and although I chose the music to be > played, I knew it would be to Tony's liking. Okay I heard one or two gasps [quoted text clipped - 14 lines] > > Alayne Alayne! Kevin Wilson as in Kevin "bloody " Wilson???? No wonder there were gasps - had we done that at my Dad's funeral my nan would have dropped dead in horror! I can't stop giggling about it.... Dad chose his music - Bob Dylan "Times They Are A Changing" as he was carried in and Edith Piaf "Je Ne Regrette Rien" (which floored me) as he left. Both have been used in adverts recently (DFS bloody sofas for Edith believe it or not) and I get shivers when I hear them unexpectedly like that. I still can't get over Kevin Wilson........ :0 Love Sinead > I still can't get over Kevin Wilson........ :0 I didn't like displaying my ignorance but can't resist now ... who's Kevin Wilson? It sounds like the height of anonymity ... Mary > > I still can't get over Kevin Wilson........ :0 > > I didn't like displaying my ignorance but can't resist now ... who's Kevin > Wilson? It sounds like the height of anonymity ... > > Mary Kevin "bloody" Wilson is an Australian Comedian that creates songs all about life in his own particular style, not particularly for the faint hearted but so so amusing!! Hugs Alayne > Kevin Wilson as in Kevin "bloody " Wilson???? > [quoted text clipped - 12 lines] > Love > Sinead Yes, Sinead Kevin "bloody" Wilson!!! And the particular track was Chukka Browneye, in case you have not heard that particular one the opening phrase (excuse my french here!) is "Come on ye Bastards", open up your tinnies and is all about doing the hokey cokey and putting "all" parts of the body in whilst keeping control of your nether regions." I chose it to summarise our bike rally days But I had already "warmed" up with Jasper Carrot and Funky Moped. I had pre-empted the minister that I was choosing music to represent Tony - I just didn't let him be privvy to exactly what. My handle was - he was hardly going to object in front of a room full of 200+ bikers! It was amazing the change in atmosphere as soon as the songs started which indeed was the intention. How are you doing? Hugs Alayne > I had pre-empted the minister that I was choosing music to represent Tony - > I just didn't let him be privvy to exactly what. My handle was - he was > hardly going to object in front of a room full of 200+ bikers! LOL! In 1960 the majority of guests (and the prime players) at our wedding were the members of the cycling club - the Meanwood Wheelers. They were in club racing strip, we had an Arch of Honour formed by front wheels and the wedding car was followed by all of them along the streets to the reception. Our parents were appalled, they thought it was very undignified - for a few minutes. I daren't think what the Rev. Idwal Jenkins could have thought - but I didn't care either :-) As you say, who's going to argue with all those hairy muscled legged big lads! Then the parents relaxed and enjoyed it. We didn't know it was going to happen, we knew they'd come, the whole club had been invited, but expected smart dress becuase that's what ws done in those days. It made the event far more memorable than anything else could have done and didn't spoil the solemnity of the *essence* of the event - it did add to the enjoyment though. Hugs, Mary > > I had pre-empted the minister that I was choosing music to represent > Tony - [quoted text clipped - 24 lines] > > Mary It certainly sounds as though it made the day that little bit different and that little bit special, which is indeed what it is all about. My "guests" at the funeral were told that the only black permitted would be in the form of leathers (especially considering they all came on their bikes), and for others brightly coloured clothes. Trouble is, this actually caused some consternation amongst some "straights" because they didn't know what to wear and had missed the point entirely. If I could have my wedding day again, I would love to get married in a scarlet red and have my bridesmaids dressed in white.... > If I could have my wedding day again, I would love to get married in a > scarlet red and have my bridesmaids dressed in white.... Hmm. In my case I wouldn't want to advertise ... :-) I still have my dress. It won't go anywhere near me even though I was <cough> not at my slimmest ... Mary > One of Tony's wishes was that he went to the funeral "in the back of his > mate's van" (he didn't want me wasting money on black cars etc.), well as it [quoted text clipped - 14 lines] > their own, and believe me if everyone left instructions, it would make those > left behind lives a lot easier. I was very happy with how Ken's memorial service turned out, though it was certainly not conventional. It was a poignant gift that we had been able to plan it together, other than a few decisions we overlooked that I had to make on my own. He was atheist, and didn't want a minister (if it was thought his mom could tolerate that). He wanted friends to speak. Most alarmingly, he wanted *me* to speak! His brother-in-law was "master of ceremonies", introducing each speaker. I talked first, not feeling I would hold up to speak if I went later in the service. I had asked perhaps 6-8 friends to speak for about 5 minutes each, targeting around 30-45 minutes total. The service went for more like an hour and a half! The first funny story drew a bit of shock before laughter, but people relaxed and began to enjoy the happy, funny and warm reminiscences. I tried to get friends from all the many dimensions of his life: A "salt of the earth" hunting & fishing buddy, who had been a friend since childhood (he drove 3 hours one way the night Ken was dying, just to be there); a college buddy who played in chess tournaments with him; a player from the softball team he managed, who read from "Casey at the Bat" and compared the poem to incidents on the team; a guy who worked out regularly with him doing Kung Fu; and an Iranian graduate student who had met Ken only in about the previous year, in a Tai Chi class Ken taught as a volunteer. Ken was dressed in his Kung Fu uniform, his sword in the casket with him (removed before cremation, and given to the Kung Fu friend as a remembrance). (Amusingly, his mother, who was becoming a little vague mentally by then, saw how he was dressed & thought we ought to put him in one of his late father's suits instead, so he'd look nicer!) I had clipped a lock of my hair, and tucked it in his pocket. He wanted "GarryOwen" to be played. I've got to explain: This was the regimental song of George Armstrong Custer's 7th cavalry. Custer was a Michigan boy who fought and led, incredibly bravely, in the U.S. Civil War; Ken greatly admired him. (You in the U.S. will know just how politically incorrect this was: Be assured that Ken was no bigot, though some might leap to that conclusion.) It would've been the last song played as the regiment rode away from their column and set off to meet all those Sioux! Both the admiration for the valiant but maligned Custer, and the irony of playing that song at the service, were "so Ken". A dear friend, played it (a bit haltingly, under the emotion, it must be said) on the flute. It was a very moving service. I didn't cry (teared up a bit), and I smiled often at stories & memories. Afterward, people who knew only me, not Ken, came up to me & said they felt they had lost by not having known him. Several of the speakers told me they were amazed to hear about his other sides, since the groups of diverse friends didn't intermingle too much. Then we retired for coffee, cookies, and more reminiscing. At the start of the service, I said "We’re here today to celebrate Ken’s life. . . . I hope we’ll all be able to leave the service happy to have known him, and comforted by our shared memories of him, rather than sad that he’s left a life which was growing increasingly difficult for him." I think it worked. Alayne, you are *so* right. People should think this through -- though it's hard -- and leave instructions. I suspect that if Ken had died unexpectedly, we would've done something similar to the conventional thing . . . and that would've been far less satisfactory, far less comforting. Ann T. Remove 'dontsendspam' from address to reply by email > I was very happy with how Ken's memorial service turned out, though it > was certainly not conventional. It was a poignant gift that we had been > able to plan it together, other than a few decisions we overlooked that > I had to make on my own. For the sake of those of us who might have to do it, can you tell us at least some of those decisions? This has been a very open discussion with, it seems, no holds barred. I can't think of a better thread to say what was left out as well as what was put in. I for one shall be saving the whole thread to its own folder. > He was atheist, and didn't want a minister (if it was thought his mom > could tolerate that). He wanted friends to speak. Most alarmingly, he [quoted text clipped - 5 lines] > minutes each, targeting around 30-45 minutes total. The service went > for more like an hour and a half! I went to a funeral like that, that of one of my very dear friends. Her three daughters said that I, as an honorary daughter, should speak, along with the rest of the family. It was a very great privilege. No time limit was made, I said what I wanted to and no more. I feel that everyone else did the same. Grandchildren sang and played instruments and recited poems, it was beautiful. > The first funny story drew a bit of shock before laughter, but people > relaxed and began to enjoy the happy, funny and warm reminiscences. Yes, that's what happened when I talked about my relationship with Clara. > I tried to get friends from all the many dimensions of his life: A > "salt of the earth" hunting & fishing buddy, who had been a friend since [quoted text clipped - 5 lines] > who had met Ken only in about the previous year, in a Tai Chi class Ken > taught as a volunteer. Ken was a versatile man! > Ken was dressed in his Kung Fu uniform, his sword in the casket with him > (removed before cremation, Oh, brilliant :-) > and given to the Kung Fu friend as a > remembrance). A nice thought. > (Amusingly, his mother, who was becoming a little vague > mentally by then, ... as we do ... :-( > saw how he was dressed & thought we ought to put him > in one of his late father's suits instead, so he'd look nicer!) I had > clipped a lock of my hair, and tucked it in his pocket. What a smashing thought! I hope I remember that. > He wanted "GarryOwen" to be played. I've got to explain: This was the > regimental song of George Armstrong Custer's 7th cavalry. Custer was a [quoted text clipped - 6 lines] > Custer, and the irony of playing that song at the service, were "so > Ken". Since I know nothing of Custer or American politics I can't judge - but I wouldn't anyway. > A dear friend, played it (a bit haltingly, under the emotion, it > must be said) on the flute. Spouse played the Old Hundredth on his recorder after his father's ashes were interred. It wasn't well played but I was ashamed that the rest of the family walked off. > It was a very moving service. I didn't cry (teared up a bit), and I > smiled often at stories & memories. Afterward, people who knew only me, > not Ken, came up to me & said they felt they had lost by not having > known him. Several of the speakers told me they were amazed to hear > about his other sides, since the groups of diverse friends didn't > intermingle too much. It's true of most funerals that it's the only time the diversity of friends get together ... > At the start of the service, I said "We?re here today to celebrate Ken?s > life. . . . I hope we?ll all be able to leave the service happy to have > known him, and comforted by our shared memories of him, rather than sad > that he?s left a life which was growing increasingly difficult for him." > > I think it worked. And so do I ... > Alayne, you are *so* right. People should think this through -- though > it's hard -- and leave instructions. I suspect that if Ken had died > unexpectedly, we would've done something similar to the conventional > thing . . . and that would've been far less satisfactory, far less > comforting. Yes - but (knowing you through this ng) I'm not sure that it would have been 100% conventional ... Thanks for sharing this, Ann. I feel better for it. We often think, when we do something unconventional, that we're unique. It's good to know that there are other good people who are prepared to stand against the flow. Hugs, Mary >>I was very happy with how Ken's memorial service turned out, though it >>was certainly not conventional. It was a poignant gift that we had been [quoted text clipped - 3 lines] > For the sake of those of us who might have to do it, can you tell us at > least some of those decisions? You know, I honestly don't remember them all, 6 years on. I mainly remember at that at the time there were moments when I said to myself "cripes, what would he have wanted?". I *think* some were: - incidental music (e.g., as people were entering & waiting for service to start) - whether he wanted an open casket service vs. immediate cremation (he had decided on cremation vs. burial, but we didn't know enough to realize that this question would arise) - what he would wear - what sort of reception for family/friends after, if any That's all I can remember! Ann T. Remove 'dontsendspam' from address to reply by email > >>I was very happy with how Ken's memorial service turned out, though it > >>was certainly not conventional. It was a poignant gift that we had been [quoted text clipped - 18 lines] > > That's all I can remember! You see - if you can't remember and you were there what hope is there for us? :-) Mary > Ann T. > Remove 'dontsendspam' from address to reply by email > > I was very happy with how Ken's memorial service turned out, ... > > other than a few decisions we overlooked that > > I had to make on my own. > > For the sake of those of us who might have to do it, can you tell us at > least some of those decisions? The only one I remember tripping me up briefly was when the undertaker asked whether I wanted to take her wedding ring off before burial. I didn't. We hadn't planned in detail - she had just insisted she wanted burial - but in most of the choices I was quite confident what she would have wanted, like having Natasha (then 6) throw in the first earth. I guess it was easy for me because she had pretty traditional values. Tim > For the sake of those of us who might have to do it, can you tell us at > least some of those decisions? This has been a very open discussion with, it [quoted text clipped - 7 lines] |
Enable EMail Alerts
Start New Thread
Reply to this Message