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|Voices of warriors - Patients|
The hard part is letting go of the girls, not because I can't let go, but because, as a single mom, it's been me and them always. We are close, they are still young (10, 11 and 18 years). It's not fair on them. That said, all the plans, all the thoughts..... it ain't going to happen.
I have been so frantic sharing ideas, wishes, crying, laughing and holding. I have never experienced such joy or such sadness and grief.
It's been wild. For years I have "made do". Always budgeting, always cutting corners and always putting the girls needs above mine. Absolutely no regrets though, no bitterness. Having said that, I had just sold my house and moved into a rental that I thought would carry me through for a few years. Oh well. Anyway, I've just spent the better part of a week buying "stuff". Nothing fancy, but stuff that really embodies who I am, things I have always put to the side as "nice to haves" but not absolutely necessary. Little bits and pieces to make the home feel like me. I've been pretty practical about stuff all my life. Now I'm going all out with candles, soft pillows, warm colors, filling the house and garden with color and flowers, scented oils. I'm having a blast. If someone saw what I was doing they would probably think I was pregnant or something. I feel like I am nestling. I know harder times are to come when I will be house bound, so if I'm going to spend so much time here, I want a) to feel good about my environment b) and probably more importantly, I want to go leaving the girls with a "home" set up that epitomizes who I really am inside. They are absolutely thrilled with what is happening and all are glowing with how the house is coming along. We snuggle so much, hug so much. I feel like a big momma bird with her little chicks. It's great! We've also spent some time fixing up their rooms. They already like their furniture, but we went out and bought new covers for their rooms, nice lighting, nice rugs. What a blast! My ex tells them (doesn't like to share with me for some reason) that he will take over the house as is for a while. It's a conversation I intend to have with him soon to nail that sucker down (as much as I can - dying wishes and all that)
Note - this is an email with random thoughts and paths. The steroids don't help, but so much is going on in my mind at the same time. So forgive me.
Damn, idiotic, moronic...... I'm frigging dying. All my life I have worked
hard to be who I am. And damned proud of it. My parents were uneducated.
My mother was 10 years old when she was taken out of school (in a little
village in Cyprus) to look after her younger siblings. My father worked
from the age of about 12. We moved to the UK because of my fathers ill
health. The words warmth, love, nurturing are not words that spring to
mind when I think of my upbringing. My brothers and I worked hard to get
ourselves through college. I worked and have never asked for a penny from
anyone from the age of around 13. I also brought up 3 beautiful girls,
have a nice home (no mansion) and a little money. I made sure warmth,
nurturing, love, empathy, humanity are all words that surround me and
my girls. Sure I would have liked to have enough money to put them all
through college. But that ain't going to happen and now it's their fathers
turn to take over.
Along this journey, I have found peace. I am happy with my life. Lots I didn't do, but lots I did. And when I think back I can say with certainty that I was true to myself always. I maintained my integrity. I never went out to hurt anyone emotionally, physically, spiritually. As a teenager I knew I wanted to be a mom. And I have been a damned good one. I knew I wanted to change the life of at least one person. Not only have I created 3 that I know will go out and do good but also spent time teaching children, some of whom had difficult lives and for those, I made sure they received the specialized help and guidance they needed. I made a difference in people's lives, if only briefly.
I have been so overwhelmed by the love I have received these few weeks. My friends have, until now been cooking for me. Driving me (seeing double isn't conducive to driving). Popping by with gifts, flowers. Friday I was taken for a manicure & pedicure. Saturday they threw a hair cutting ceremony where they took turns cutting a lock of my hair for keepsakes (I'm going to loose it anyone with the radiation). The girls then took turns to spray my hair all sorts of colors and cut. It was so fun. I then had a hairdresser tidy it up (the girls decided a mohawk would be good,which was so silly).
I feel so loved, so happy. Sure, there are times when I wake up with a huge weight on my mind and I just ball my eyes out with grief. But being surrounded with so much love and caring. What could I ask for more?
I have a transition group of close friends to help with the girls when I'm gone. Three wonderful women that epitomize either who I am, who I want to be or who are strongest to be able to guide these girls through the tough times. They can look at them and know who I am. My friends can share insights about me and things that happen. Continue the spirit in me. I will always be with the girls, in their hearts, minds and souls. They know that, but when they need a hug. When they need to talk about their mom, when the need the nurturing of a woman. Talk about their first date, what to do when their periods start. They will have my wonderful earth angels to guide them, and I will guide through the heavens. Please say a prayer for my angels. I pray that you all have people so dear to your hearts near you now and always.
Anyway ladies and gents. Sorry if I bored you or whatever. I just wanted to share. I haven't seen too much written by people about the process of dying. Finally, I would like to extend to each and everyone of you my deepest and sincerest thanks for being there for me always. You have guided me, challenged me, made me laugh, made me cry, but always been there for me when I needed you. Thank you. I hope to be able to continue posting from time to time and pray I can. I hope my thoughts help others through some of their pain.
Wishing good things for each and everyone of you, now and forever. Hoping
our paths continue to cross (although under better circumstances).
n.b - disclaimer, I ain't giving up the fight. I'm doing whole brain
Soulla to Wendy:
Nov. 11, 2001
I don't feel quite like I used to, but I am not sick nor in pain, as
yet. I seem rather lethargic these days. I lack a certain amount of gusto
and vitality. I suspect I am depressed. I have had 3 bad days wherein
what I strongly suspected to be the case was, in fact, officially confirmed
by the URO, pathology reports, ct¹s, ultrasound, blood lab analysis,
chest x-rays, urinalysis, cystoscopy, etc.
My philosophy has always been for quality, not longevity. That philosophy
is now up against the ultimate test. How will it fare? Will I change my
leanings? Should I? Should I dare to blaze a trail for a wee bit longer,
or should I let the natural course walk along that wall of death as it
will? It is inevitable, you know? I tend to consider getting it over with,
not prolonging what surely could be a lingering nightmare for me and my
sons and few friends. Those last lingering months that maybe a radical
cystectomy or chemo, or radiation might extend to you may not be worth
living at all when your ill, drowsy most of the time, unable to engage
or enjoy those for whom you care on an alert basis, stupefied by pain
killing narcotics. What's the point of this suffering ? What's the point
of this prolonging when you can¹t do much of anything but endure
pain, when you no longer even care to do anything but lie there, fading
in and out? What¹s the point of this extended time? I don¹t
want the ones I care about to have to live through this out of the selfishness
to cling to a futile life that has run its course. I really don't relish
living longer than I need to if it means prolonging a horror.
I have been reading everything written at this site for the past 30 days
You are all an amazing group of fighters. I come asking to hear what you
have to say to me, 'the fatalist'? Let me see what you see, hear how you
feel. I have some almost impossible decisions to make about my life and
death. It is my hope that each of you continue to grow in the strength
you have found. May you help me to find mine in these hardest of times,
for I falter . May we be sheltered in the consideration of each other.
May we rest in life and peace.
" At the same time, because the life of the family members of
the deceased are connected at the level of Buddhahood, if we, as survivors,
become happier and happier, that is an indication of the happiness of
the person who passed away. "
You need to do some 'attitude adjustment' if you're going to ensure that
you not only (please forgive my religious overtones here) break a karmic
chain, but die with dignity and leave your son and loved ones with good
Today I changed my business voice mail greeting to meet my special occasion.
This is what I say now when would-be clients call me:
I am a metastatic breast cancer patient. Although this means that I am almost certainly going to die of this disease (barring a miracle), I am not a victim. I don't like that word, and I would prefer that you never use that word around me. I am a regular person, who happened to be standing in the wrong place at the wrong time, and I got whacked with the cancer stick. I have noticed that people don't always know what to say to me any more, or what to do to help. Most people are loving, caring souls who really do want to help, but really have no clue what I need. To try to help you help me, I have made a list. Please keep in mind that this is purely a subjective list. I have tried to include other viewpoints, but I don't want you to think that all things work for all people. We are wonderfully, excitingly unique human beings. And so, of course, our needs will be different. You will have to judge which suggestions you feel would be appropriate, and what you would be comfortable with.
1. If I want to talk to you about what life will be like after I am dead, DO NOT under any circumstances give me that fake, terrified, cheerful smile and say "Oh don't talk like that. You will be fine." There is every likelihood that I will not be fine, and it is very comforting to me to know that you will tell stories of me to your children (and my children!!), and will always hold me in your heart. It is incredibly comforting to hear that you will include my children, who are much too young to lose their mother, in your life in a much greater way than now, while I am still here for them. You can not depress me, by acknowledging that death is probable, or even imminent. I am all too aware of it. As a matter of fact, if you put on that fake cheer, all you are telling me is that you are not able to be "there" for me for my needs. If that is the case (and I won't fault you if it is), don't even try to pretend. Just give me a quick hug (there is nothing about me that is contagious), and tell me you care, and skedaddle. I don't have the time to waste on fair weather friends.
2. Don't give me the standard offer, "If there's anything I can do for you, please don't hesitate to give me a call." Most of us are used to being strong and capable people, who have taken care of ourselves (and usually others) for decades. It is very uncomfortable to be in a position of not being able to do for ourselves. I would suggest that you drop in for a visit, pick up a broom, and sweep. Ask me if I have any plans for dinner, and just start making it. I won't ask you to do these things. I am not used to asking for help. I am not good at it. If it is an emergency, I will call out for help. But if it is the little day to day nonsense that piles up until it feels like it is going to consume me, I will probably not ask for your help (but I will be eternally grateful if you just come and do it). Be assertive. (But never mean!)
3. Talk about old times often. This has come as a surprise to many people when I have suggested it to them. They say "But Aunt Nellie will think that I think she is about to die if I talk about old times." HELLO!! She is about to die. I am about to die (although I hope it is prolonged by long periods of relative wellness). And I love reminiscing. It helps me to remember fabulous times in my life that I may have forgotten. It brings me a smile. It helps me to remember that even if my life is cut much shorter than planned, that it has still been a good life. It gives me a better sense of wholeness.
4. (Actually, corollary to 3.) Take some time to organize the photos into albums. I don't know a person alive (well, maybe one) who is really on top of their photos. Put everything else aside, and devote however much time it takes. Get the photos in albums, with captions, and stories. If you have a videocam, just set it up and let it go. If you just have a tape recorder, that would be great too. Not only will your loved one have a superb walk down memory lane, generations to come will bless you. If I had only done this with my mother..........
5. Don't ever, ever feel guilty for enjoying life. When you find yourself having a great time, and you happen to think of me, do not feel bad - not even for a microsecond. Life is short. For all of us, whether we live to be 10 or 105. Enjoy the hell out of it. I would if I were in your shoes. Heck, I do now. My favorite cliche du jour: Your life is a bag of coins to be spent any way you choose. But you can only spend it once. (Spend it wisely, my friends.)
6. Don't be afraid to be afraid. If you are paralyzed with fear (and believe me, I have been there - as has my family!) it's ok to tell me that you are afraid that I am going to die. I am afraid too. Sharing that fear really does in some way make it easier to handle. Denying it seems very very false. I need real. I have no use for false. Once we have shared the fear, amazingly enough, we can set it in back of us again and move on. If we don't do that, it will block our paths at every turn.
7. Chances are that my bills are a pile of unorganized paperwork in a box somewhere. Cancer is an incredibly overwhelmingly expensive proposition. All the charges are mindboggling, and intricate. Insurance companies (in my experience) are incompetent and potentially fraudulent bozos who screw up all the time. I don't know if they could really be that incompetent, or if perhaps they are encouraged to be so, hoping that you will throw up your hands in confusion and pay some of the things that they "forgot" to pay. At any rate, I would be enormously grateful if you would come by some day, without judgement as to what kind of a mess I have made of the pile, and help me straighten it out. Maybe make a few phone calls. Maybe write a few letters. You wouldn't believe what a difference it would make.
8. Say, "I love you" a lot. Depending on who you are, that may come out as "You are the funniest person I have ever met," or "In the history of mankind, there will never be another person as __________ as you," or simply "I love you". But this is your chance. Don't blow it. After a certain point, there is no going back for makeup credit.
9. Be very conservative in what perfumes/colognes you wear. Chemotherapy often makes for incredibly sensitive olfactory senses. Perfumes can be overwhelming and nauseating. And by the same token, be especially sensitive if you are a smoker. (Unless the patient is a smoker - I wouldn't know about that situation.) If you do have to smoke, please go outside. Even if I say it is OK. And hang out outside for an extra 5 or 10 minutes to air out. You wouldn't believe how much vile aroma clings to you.
10. Make plans, not offers. Instead of asking if I want to do lunch sometime, ask me if next Tuesday is free. Then tell me, "Great! I will be by to pick you up at 11 so we can go out to lunch. Maybe we could do a little window-shopping if you are up to it." Of course, you will have to be flexible, in case Tuesday is one of those days that I feel like I have been run over by a Mack truck...
11. When you ask me how I am, please remember that I am much more than my disease. I know that people ask out of concern, but I get a little tired of reciting disease progression/regression, treatment updates, symptoms, etc. Remember that we really did have things we used to talk about BEFORE I got whacked. Those things are still important to me.
12. Please be aware that "looking good" has NOTHING TO DO WITH IT. Don't worry - I even do it myself - tell my friends how good they look as if it meant that the cancer must be under control... No such luck. Until the very very end stages, cancer itself frequently doesn't cause any distress at all. Usually doesn't hurt. Often you can't even feel it (which is why so many of them go undetected for so long.) The treatments, on the other hand, can make you want to die, even when they are saving or (at least prolonging) your life. This doesn't mean I want you to stop telling me I look good. I just want you to realize that it really doesn't mean diddly-squat.
13. I need you to realize that this experience has changed me in several ways. I am still the person I have always been, but I am different, too. For one thing, I am tired. You know how tired you are when you are sick? Imagine having that be your new "normal". Be sensitive to my need to rest often. And don't expect me to be able to go as long or as fast as I used to do. I also don't have the memory I used to. Treatment has taken things from me that I will never get back. Now I feel like I am slogging through marshmallow goop, both physically AND mentally. Another change is in attitude. Some things just don't seem important to me any more. (Hopefully, I don't yell at my kids quite as much.) And other things have become more important. For example, I talk to strangers more often now. When I have something to say, I say it! Don't be surprised if I start dancing in the aisle at the grocery store. It can be a little disconcerting. If I embarrass you, you are free to walk away and pretend you don't know me. But please don't try to limit me. Let me spend the rest of my life doing exactly what I want to do!
14. Don't try to shelter me from the harsh events that happen around me. I have been omitted from too many events, because people well-meaningly felt that I had "enough to handle". Well, I am still alive. Even though I am fighting a war with this disease, I don't want to be shut out of the lives around me. Which includes sharing your pains as well as your joys. My body is failing me, but my spirit wants to support you in whatever way I can, for as long as I can. I don't need protection from truth.
15. Go to the doctor's appointments with me. Sometimes my poor "chemo brain" drops important information. It is very companionable to have someone with me in the various waiting rooms (maybe someday doctors will operate in a timely fashion.......nah, never mind -it'll never happen!). And it's great to have someone to talk to during an infusion drip. It is a good idea to have a pre-written list of questions. Again, a tape recorder can come in handy. And if the doctor is a little short or brusque, dig your heels in and be assertive. Help me to remember that although I am but one file in the doctor's toppling stack of workload, I am the single most qualified protector of MY LIFE. I have every right to as much of the doctor's time as I need. He (in my case she) certainly keeps me waiting long enough!
16. (Actually, corollary to 14.) If I don't like the doctor's advice, or manner, remind me that there are plenty of doctors out there, and I deserve a second (or third....) opinion. Cancer treatment - especially for metastatic disease, is not even close to refined yet. There is so much "art" and doctor's judgement to it, that I should never be coerced into a treatment I don't feel right about.
17. Respect my decision. There may come a time in this journey that I
decide to lay down beside the road and stop fighting. If I make this choice,
I know that you will be disappointed and dismayed. Maybe even furious.
Please remember that it is my battle, and my decision. I know that you
love me. I know that you want me to fight. But if that day ever comes,
please understand that there is simply no more fight left. I promise you
that I will never ever make that decision lightly.
I hope that these suggestions help you to understand what is TRULY helpful, in dealing with a friend or loved one who is battling a life-threatening illness. Of course, the most important thing you can do is to just be there. Listen. Perhaps your heart will hear what needs to be said or done. Bless you for caring, and may there be miracles enough for all of us!
Lester's Advice to Caregivers:
Shaving, especially with an electric shaver and its vibrations, could
be painful, plus probable razor burn if pre-shave lotion is not used.
The screen on any electric razor could start to break down, sucking in
and shaving off pimples etc., plus leave long scratches on the face. (These
have happened to me in years past and I wasn't even sick, let alone terminal)
A blade razor could be dangerous even with a slight cut in some cases,
plus painful as it scrapes across one's face.