My Husband, My Life, My Love, My Family, My Cancer
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I am never sure whether to stay on the boards. Because my mets are not visceral, waves of guilt can overwhelm me despite the pain and complete lack of use of my right hand. The companionship though, is for me so important. sometimes the tears just fall as the have done tonight.
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Micmel, All,
Sorry I haven’t chimed in until now....was away for the weekend. The news about Dianarose is so hard to hear. She and I have exchanged blog posts many times. But I just know that when this life ends a new one starts, one with no pain or sorrow. I have very strong beliefs on this subject, but respect each of your views. I don’t know the other woman that passed, but my condolences to those who did.
Parry, I know that you are a good friend no matter whether you have cancer or not. As MJH said, life is fragile, so embrace those around you. You are worth it. Isolating ourselves only makes us lonely. Hugs to you.
Micmel, I can come on the 24th or 31st (both Thursdays) of this month. I have a crazy calendar of appointments, so let me know if either date works.
Love to all,
Laurie
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Marian~I have taken breaks before. From the Boards....I always find my way back here for the women are are soldiering alongside with me. Dianarose is a beautiful soul. I am deeply gutted. Seriously. To think I’ll never speak to her again. Only to know from her DH when she is finally done her fight. You are important. We all are in our own ways. Leaving Silences your voice and we need all the roars here we can get....
Parry~I am sucky friend also I the real world. It’s not intentional. It’s just the exhaustion and fatigue that come along with this shit disease that none of us even asked for. You be who you are and those who matter will love you anyway. I mean you must be pretty terrific if someone is marrying you two times!! We love you.
BooBoo~ I’ll look at those dates. I will get back to you. I hope we all don’t feel any pain when our time comes....it seems wrong to have someone suffer so much during our entire battle. Why should we have to fight to Live and fight to die as well. I’m so angry sometimes and then I fall to my knees in tears. Hands up begging to the heavens above for us all. I flip back and forth in my faith or non faith. I wrestle with it so much. I guess that’s what facing our mortality.. does to Human beings. Can’t wait to have lunch. Thanks for each and everyone of you. More than you know.
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Runor ~ It does really suck royally. Helpless we walk into the fog. Some of us make it through. Some don’t. When my time comes. I hope to be as brave as she has been her entire fight through this. She always held her head up and was always so sweet and kind. Honestly towards the time before her decision was made to enter hospice, she was suffering so much. It was a helpless feeling just knowing she was told she may not see Christmas. But she did. She did. Love you ladies. Muchly
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Good morning ladies
Sad to hear about the loss of another sister.
Dinarose in hospice is devastating.
I pray for you all.
Take care
Tanya
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Marian, I hope you do stay on the boards. You have no reason to feel guilty. Everyone here has their good days and bad days. I enjoy hearing good news and stories about normal life events. I often take breaks from the boards. Sometimes I cannot handle all the sadness and hopelessness that people experience. Sometimes I just need to get away from cancer for a while. Since the companionship here is important to you, you have become important to us.
I hope that Dianarose finds pain relief and comfort in hospice. She has had a difficult time for the past few years. She never seemed to have a break from the pain, the worry, and the bad news. She is in God's hands. I am lifting her up in prayer.
Lisajo's passing came as a shock to me. It came so quickly and so soon after things seemed to be getting better. Perhaps it was a blessing to go without prolonged pain and suffering, but it really was a shock. She is ar peace now.
I have said before that when my time comes, I will just fade away and not have anyone here notified. I was once very active on the boards, especially the Bone Mets Thread. Most of my original contacts there no longer post. Many have passed, some are doing well and no longer need the support here, and others post to Facebook rather than here. Now that I post less frequently, it will be easy to just fade away without notice.
I will have scans on Wednesday to find out if Xeloda is working as well as I think it is. I am not nervous about it. Whatever happens, happens. It doesn't change the fact that I feel good. My DH and I are heading for Walt Disney World later this month - just the two of us. I am looking forward to the warm weather.
Lynne, I hope you have recovered from your biopsy. Four more days till you are back on chemo, right? I hope this one works for a long time and you don't have many SEs.
Hugs and prayers to everyone from, Lynne
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Dear Lynne,
Trust me, we would notice if you stopped posting. I love the way you express ypurself with words. You are so kind, and your kindness shines through wherever you post. Anyway, I hope scans go well on Wednesday so you can continue on Madame X. Also hope you enjoy Disney. There’s truly no better place on Earth to go to get away from the everyday hustle. Have fun!
Laurie
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Micmel,
The puppy pic of Chief makes me want to run out and buy one! Adorable
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lynne(50's)~ I was just going to say the same exact sentence as Boo did. I would definitely notice and as Mae would also agree. When the role call goes out. I notice everyone. It may take me some time , but it will happen. You're a special woman that lightens the entire page with her sweet words of support and love..I can't imagine you not here. Honestly ....
Boo!!~that's what I thought until I watched him grow into a horse. He's wonderful and sweet, not a mean bone in his body. Just too much for me to handle. I could never have a dog that large with cancer.i am a dog owner though , as you’ll see. My close sweet second daughter has her hands full. When-he was a puppy I had him several days a week. Loved every second of it. They grow so fast!
I will get back to you about the date.... can't wait. Much love to all ~M~
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week 16 of Abraxane under my belt. This will start month 6!
Talked to a lady today who has been on Abraxane for 16 months and is doing great. They dropped her to 50% due to se's but she's happy with it with good scans!
And I thought five months was bad!!!
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50's No, no and no. You will not fade away. Let me start over, please choose not to fade away from here. You are family.💞
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I am aware that your friends who I did not know, Dianarose and Lisajo's deaths shook me at a time when I was just plain sad in general. I will be here as it is where I belong. I saw my GP today about my worsening hand and 3 minutes after I left his office, I got a call from a plastic surgeon's office for an appointment tomorrow! I saw her last year but then it was from a 6 month wait post breast surgery. She will see me tomorrow about my hand. Yay and she is a hand specialist as well as breasts. Even if nothing comes of it, I feel better just getting having her look at it.
Also I have been considering a whole second opinion. We have insurance that should pay. Any advice? Seattle has a cancer center highly rated.
Thanks to all of you for your words on the deaths of your BCO sisters.
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50's, if you decide to fade away from the boards in the (far distant) future, I respect your choice but let me say that your absence would ABSOLUTELY be noticed. I've written in "that notebook" for my son to log in here and let you all know. I guess he will. Hopefully it will be a good while yet, but we never know. So sad about lisajo and about Dianarose going into hospice. Micmel, I second what you said about us having to fight to live (pain, sickness, weakness etc) and we hope we don't have to fight to die when it is our time. Many prayers for no pain, and gentleness at that time.
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It's never easy to say goodbye to those on these boards whom we've come to know.
And as you say, Micmel, the title of your thread, it brings home what matters most to us. Through our own experience with mbc, and seeing what others go through, we try to be mindful every day not to take the little things for granted, and to cherish the time at hand.
I've mentioned before, a attractive, married couple from my town, she in her 40s, he in his 50s. The kind everyone in town knew and loved. They appeared to be in great physical shape, didn't drink or smoke, outgoing but not flashy. Generous in spirit, community minded, fun-loving. In December of 2017, she had a brain anyeurism and has never been the same, needing round the clock care. Her husband never left her side, taking leave from work. Four months after she had the anyeurism, March of last year, he learned he had stage iv colon cancer. He passed away last week.
This vibrant couple's life was changed in an instant. It is bewildering.
50sgirl, I agree with what others have written here to you; you have such a kind, caring spirit. I hope your trip to Disney turns out great.
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50’s girl Lynne,
I will always remember your kind words as I have looked forward to them; appreciated them. Many times I signed on just to read your comforting thoughts on others bad, fear filled days. You may fade away but you will be missed. I pray for you. Enjoy Disney and the Florida sun.
Tanya
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The reason I say "Fly Away Home" to our friends who have been taken by our disease is that the song comforts me. It's what I want sung at my memorial. It's comforting to me to think of our friends here with these words. When it's it's time, we will all fly away home. That doesn't sound so bad, flying home. Home may be different for some here, but to me it sounds like a relief, a homecoming. I know where my home is, it's not frightening. The sad part is leaving the ones we love. I trust that there are enough precious memories to get my family and friends through their grief.
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Lynne, I would hate for you to be gone. It would be heartbreaking. But I also understand it. I think that has happened with Kaption. I wish we had heard something from someone after she went into hospice, but also can't help thinking she meant it to be that way. I would be upset if one day you were just gone but it's your decision in the end. Would pray for you regardless as I do now! Love you sister!💟💟💟
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Good morning all! First I would like to say I'm so sorry to hear about Lisa Jose passing and Diana Rose, well that just breaks my heart, but again I hope that she will be no longer in pain and no longer suffering.
The rest of this post is for my stage four buddies. No offense to those who are not stage 4 but this is something only those with stage 4 can relate to. Lynn, I read what you said and I completely understand if you want to fade away, is that is your choice. However, let me make it absolutely clear to you that you will be noticed!
I would like to give you a comparison, candy, candy was such a beautiful person inside and out and knowing her greatly enriched my life! Was I sad when she passed, absolutely, heartbroken, but I am all the Richer for having known her. You are like that my friend, my life is so much richer for having known you and having had the opportunity to talk to you and share with you our journey as we go through this dreaded disease. While I will mourn your passing, because I will miss you terribly, I will also be happy that you are in our Lord's hands and that you are safe, and pain-free! I wish for all of us that we could "Go gently into the good night". There are many on these boards who have enriched my life and to whom I am so grateful to have been allowed to be in their lives. I think that being on these boards, is nothing short of a miracle. Can any of you imagine going through this journey by yourself, with no one who understands exactly what you're going through, no one to lend you a shoulder to cry on when you need it, no one to understand the highs and the lows and the roller coaster ride that this brings us. Tumi, I fear that I would have given up quite a while ago had I not had you fabulous women to talk to. Solin, I say again to you if your wish is to fade away I understand however, I would be devastated to not be able to know what is going on with you.
One of the things that I find troubling after some of our bco friends have passed away has been that we become so much a part of their life through sharing on these boards and yet once they're gone we're no longer part of their lives. No they're not living, but they have gotten us to care about their loved ones, their children, their significant others, their grandchildren, their parents and so on. That is something I find particularly troubling and I can't tell you what it means to me when for instance, Lewes comes on and lets us know that he and his son are are doing well. When Mama came back on to let us know that that Danny's Family how they were doing how she was doing how Danny sisters were doing, that meant the world to me because I always wonder, like with candy I wonder so much how her daughter is doing how her husband is doing and sometimes I wish someone would just let us know that they're doing okay or they're not doing okay I mean whichever. I completely understand why they don't want to come on these boards however it is something that I find truly sad sometimes. I am giving all of my B Co information to my daughter in law who I know will follow through and let you all know if something happens to me. She is a very kind and sweet woman and I know you all will be good to her.
So in closing, I just want to say to all of you that I love you all so much and you have enriched my life in ways that you cannot possibly imagine. Even though I have not been a regular on these boards for a while, every once in a while if I have a few minutes I will try to catch up oh, it just becomes difficult to answer everything and everyone. I probably will stay away for a little bit longer, but I will be back at some point.
Anyone who has new scans, I am hoping that your results are everything that you want them to be. To all of those all of you having a difficult time, I pray for all of us every single day.
Much love,
Claudia
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Claudia, I think that is a brilliant idea. My family, especially my younger son and daughter know how important BCO is and I plan to make sure they are in contact with the boards in the end.
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My daughter will share what's happening whenever I cannot. I will encourage her to check in here periodically to give updates on how she's doing.
One thing I have found, after two years here, is that I find writing to be therapeutic for me. When it's stops being therapeutic, I will write less. We go through stages, I've found. I have a need to encourage others now, at first my need was to get answers and find hope. I call myself a storyteller, I love to tell stories. If I can tell a story that might help someone here, I tell it. If I don't have one to tell that is encouraging or funny, I keep quiet. I have to be inspired by something I read to write something that might touch even one person. So, depending on our stage, we all might be more active or less active. Bigb, I get it.
All that said, it is still hard for me to read when someone says they are going to post less often. I love hearing your stories as much as I love telling stories. My curiosity springs into high gear, my imagination becomes intense, sometimes sleep depriving. Is it ok to say it drives me nuts not to know what's really going on with the friends I've made here?
So, what do I do with that? I don't know. It's beyond the scope of my imagination, as Anne of Green Gables might say. Are we here for our own therapy or others? Do we stop caring? No, absolutely not. Are we here for a season of our lives, then we move away because that season has ended or is keeping us from doing more important things with our flesh and blood family?
Unanswerable questions from me today. 💞
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When it’s my time, I’ll try to go out as I live. 5,4,3,2,1.... Later, bitches! (Meant playfully)
But none of us are going anywhere soon.
I’m going on a 5 day Bahamas cruise next month, is it crazy that I’m already packed?! I’m kinda excited, I love love love the beach 🏖
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The death of friends has promoted some good discussion. illimae, I think it's great that you have packed already. I often do that so I can do a couple more trials, usually to take thongs out.
So I am just back from seeing the plastic surgeon who could not help me.That pesky neurovascular bundle that my tumour is wrapped around does not allow for any surgery she could to help my hand. So hear goes research for the top experts in N. America. She gave me names of two top brachialplexs doctors, one in Toronto and one in St. Louis plus the top cancer hospitals, MD Anderson and Sloan Kettering. Not sure where to start but can't call any now as it is too late here on PW time.
Any advice welcome.
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hi Everyone
My scan is a happy scan! No progression in any lesions. All stable. That mean no complications for my trip to Canada in March. Happy, happy happy!!
Bigbhome Claudia, I agree with everything you say. This board has helped me a lot and I care about you all, even though we are an ocean apart, most of us. I will make sure, my daughters can let you know when the time comes.
Love to all
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Marian, That is disappointing news from the plastic surgeon. Why does everything have to be so complicated? I know you will make calls and do research before you take the next steps.
Minnie, WOOHOO for clear scans! That is wonderful news. Now you can plan that trip to Canada with a clear mind.
Mae, I don't think it is at all odd that you are already packed for you cruise. I have been packed for my Florida trip for a week and a half. I am ready for warmer weather. I call it planning ahead. We are perfectly normal even if no one else agrees.
I have read and thought about your responses to my last post. I am reevaluating my fading away plans. Maybe I will ask my DH or a DIL to reach out to someone who can post the news when I pass. I think it might be difficult for my DH to post to this site, but some of the friends here would be willing, I think.
So, just in case someone thinks that I am full of doom and gloom and expect to pass away soon, it is not the case I PLAN TO LIVE FOR A VERY LONG TIME! Well, I am a clutz sometimes, so it is entirely possible that I will fall off a chair or trip over my own shoe laces and land on my head, but MBC is NOT going to get me in the near future. I will have CT and bone scans first thing tomorrow morning. I still expect good results, just like Minnie. I have appointment with MO on Monday, and I haven't yet decided if I will pick up a copy of the reports earlier than that. I usually breakdown and do it because the waiting is horrible.
Grannax, I like reading stories here, too. It is good to hear about trips and family and shopping and remodeling and everything else. It also feels good to know that people feel free to share their fears, bad news, and questions here. It is not good for us to keep those things to ourselves, and there is always someone here to provide understanding, support, comfort, their own experiences, and advice. It is true that no one else truly understands what we are all going through.
Gracie, I often think about Kaption and wonder how she is doing. I pray for her as well as everyone here. I think she ended things with us in her own way. She has always been a cherished presence on the boards. The unknowns sometimes haunt me. I hope for the best. I don'tknow if you remember Artistatheart (Kathleen). We often communicated with each other through PMs. It was painful when she stopped answering. I knew she had not been doing well, but until one of her daughter's eventually responded to one of my messages, I did not know that Kathleen had passed away.
Claudia, I have read and reread your post. You have included so many good points that it is impossible to pull out just one or two for discussion. You know that I love you, too, and your friendship enriches my life.
Everyone here is special to me. You all surprise me with your genuine caring and kindness. I thank you all for helping me through the tough times and making the good times even better.
Hugs and prayers from, Lynne
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Minnie, yay for your scan results! So happy for you.
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Hi all! I took a break from the boards over the holidays but thought of you all. You are all special to me! Thank you to the ladies who sent me a pm to make sure I was ok. I always feel bad that I don’t have the capacity to keep up and comment on all of your posts.. please forgive me, I feel like I can hardly keep up with myself at times. We had a wonderful holiday and I did good until New Years Eve. I cried and cried when the ball dropped, wondering if 2019 will be the year on my death certificate. I’m doing well and have no reason to think this but my mind goes to crazy places at times. I know you all get it, my husband is absolutely wonderful but tends to push me to “ be positive “. Anyway, I’m glad to be back and pray for all of us every day.
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Lynnwood, Welcome back. I have missed you. Don't worry about keeping up. I think that is impossible.
Micmel, Where are you? Do we need to bombard you with PM's. I hope you are doing well.
Hugs and prayers from, Lynne
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50s girl Lyn, hoping for Happy scan for you, as my Oncologist said, actually Feliz Tac, Cat scan in Spanish, back to front. Like you, I intend to be here for a long time. Have fun in Disney! It brings out the child in all of us. Mae, it's normal to pack,early. Bahamas sounds fantastic. I lov the beach too. My DH is going on a football trip in June for 5 days. 2 matches. He needs and deserves a break from me I suppose, and I will just go to the beach every day, read and eat there! He gets impatient, so I could stay till sundown lol. I'm so excited about Canada, I'm already packing in my head lol. Thanks everyone. Hi Micmel, you ok
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Hello Ladies. I am ok! Just real tired. I went to visit my dad again and it just drained me. He is fading fast. Has some strange red spots appearing in long bruise like patterns that have me concerned. I saw a DNR posted in the kitchen and my heart sank. That made it real. So I’m a little funked out about seeing my dads name on it. 💔 estrangement or lost time it is hard.
Lol @ Lynne. No bombarding needed. Message received lol. Love to all!
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