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Trawna

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Posts posted by Trawna


  1. Hi and welcome! In addition to our strong survivors here, there is a significant contingent of caregivers who also come to share their experiences or simply talk to a group that understands what they are living through. I was a caregiver for husband for 3 tough years with lung cancer (and prior to that I was caregiver for him starting in 1991, when he had kidney cancer and had one of his kidneys and adrenal glands removed.)

    I know how tough it is to be shocked by the diagnosis, how helpless and sad and resentful you probably feel in face of this evil disease. :shock: Many were the times I asked, why him? Why us? Why me? Of course there is no answer to this, so all we can do is the best we can to provide our loved one with care, support and love.

    We are here for you, and for your Dad, and I wish your Dad and you and the rest of your family some wonderful times in the future and may you take what joy you can find as you all travel together through this difficult time.

    Do come back often and tell us how things are going, or ask questions, or ask for help or information or just rant if you want to.

    (((hugs)))

    Jane/'trawna'

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  2. Mary, I thought I'd let you know that I'm thinking of you on your "day o' docs" and hope that all goes well. My daughter and son-in-law are on their way here to hook my home wi-fi to Netflix, so I am looking forward to trying it out! I know what you mean about lack of concentration for reading ... I bought 4 e-books over Christmas, and have read about 50 pages of one of them! ~ another good reason for getting hooked up with inexpensive old movies on Netflix. I know it's not as good in Canada as in the USA re selection, but my daughter tells me she has a work-around for that. I'll let you know if it works well and if so you may find it helpful to watch some of the oldies-but-goodies for a while, instead of trying to build up your concentration for the e-books.

    Hope there's nothing but good news for you today.

    Jane


  3. Hello Clare:

    I am retaining hopeful thoughts for your Mum -- I can certainly understand that she may not want to undergo treatment for herself, but she may feel that she has to make the effort for your stepfather and/or for you. The wheelchair may give her morale a pickup, because right now she may be feeling "trapped" because of her immobility and wondering whether even trying anything else is useless and won't improve anything, so the wheelchair may give her greater freedom of movement and the opportunity to feel a bit more normal, even if only because she can get out and about in it.

    It is such a tough thing when she has already been through one set of treatments and felt terrible, and now seems to be headed into another round which may make the side effects she already has experienced worse. But as Randy says, we do need to respect the individual's decision. Just be sure that she knows that she should make her decisions based on what she feels is best and not on the reactions of others, and that you will be there to love and support her, whether she continues on the Topotecan or not.

    I also agree with Michelle about the toll that caregiving at this stage takes, and your idea about getting counselling for yourself sounds like a good idea to explore. I also hope that your stepdad is giving you some break time for yourself or that other family members are, or can do this.

    Feel free to vent at any time. That's certainly one reason we are here, and many of us have been on the caregiver side of the equation, so we are here for you!

    Jane


  4. I am sorry the scan news was not better, Janet, but the idea of a doctor on the Lungevity Scientific Advisory Board sounds like an excellent plan! I am thinking of you and hope that whatever you decide to do you will find an excellent trial/treatment. Let us know what you decide to do.

    Thinking of you!

    Jane


  5. Hi All;

    I check this site almost every day, and I too have noticed the lower level of participation in "The Air". I'm sure that the loss of several formerly-regular contributors has played a significant role in this ... I did not write here often (my life is pretty dull!) but I always enjoyed reading the comments of our other more outgoing members, and I do miss them. I also think that all the spam we were getting on this board was driving a lot of people away: it certainly was affecting me that way.

    And I also admit that I continue to be a bit intimidated by the fact that so many of those we have lost were witty and smart and full of fun stories to share, as well as being good writers, good listeners and excellent sources of knowledge. However ... even if we're not (and I know from other boards that a lot are), I do not think that we should let this camaraderie and humour and enjoyable contact die. Maybe we all just need to overcome our shyness, or reticence, or lack of self-confidence, and just tell ourselves that we should make an effort to write something, even just a response or a paragraph, perhaps every second day. After all, as my English teacher used to say, how do you know you can't write if you never try.

    What do you all think? Should we make an effort to revive this board or has its time come and gone? :?:


  6. Hi Lily. Janet and Katie;

    Happy end of Monday! Katie, I like your new page, it should make it easier to navigate the site and find the section(s) that you want to see. Also, you said you thought that you had gotten ride of the trolls and it looks like you did ... thanks so much. I have been staying away from this page (and some of the others) because of them, so it really is a pleasure to see that people are visiting again.

    Janet I am so glad that you had a good experience with your hairdresser today. I really feel for you re the hair, as VERY thin hair after age 55 runs in my family, and for now anyway I refuse to do the wig thing and hats are not flattering to me, so I put up with the balding spots at the crown and back of my head. I just pretend that if I can't see I won't let it bother me. But right now I totally feel Donald Trump-ish so you have given me a good attitude toward get the long bits cut off. Both my aunt and my mother started to wear wigs, but that was back a long time ago, and they didn't worry about needing "wash and wear" hair, they took the wigs in every week to have them washed and set. For me, that just seems terribly wasteful!

    Lily I am very glad that you are home safely, and I certainly hope that your hip pain and arthritis feels better very soon. At least you'll be back in your own bed, and that always makes mine feel better. I had a hip replacement about 6 years ago so my one hip is a lot better than it used to be, but it still isn't great, so sleeping on my own mattress, (which I selected for my personal comfort)seems to give me just the right amount of support for my hip and it always makes me feel better within a few days getting back to it.

    Not much news here, it has been a pretty quiet but stunningly cold January. We had a dump of snow on Sunday-Monday, which thrilled my puppy (he went for a long "gallop" all around the back yard about 10 times yesterday and today (I think I spent more time keeping an eye on him than doing anything else!) and had a wonderful time rootling in the snow. Tomorrow I have both the gas and the electric people in (just replaced my old furnace and A/C so they have to replace my gas meter and check the safety of the electric connections so I shall likely be stuck inside all day, but the forecast is for rain and I have a ton of stuff to do on the computer anyway, so it may not be too bad just to stay inside. I sense a pizza for dinner as I haven't been shopping for 10 days or so. Just got my Xmas VISA bill in, and I rather wish I had waited to see it (before I put in the new furnace) but I did get the high efficiency models so am now eligible for a govt. rebate of $700.00 and the company will give a $600.00 deduction, and the company swears I should save about $100.00 a month on my gas bill (oh really??? we'll see!). At any rate I would have had to do it before I sold the house (not planning to do that right now, but who knows what the next few years may bring) so it should last me until I move out, one way or another!

    Katie, I'll do my best to write you a few lines (or at minimum a few key points!) tomorrow. I think it would be great if we could get more Canadian information and users. While all LC survivors/caregivers are in the same boat, I really feel badly for the Canadians and some of the close-to=the-border Americans who may want to get into a Canadian trial or consultation or even just to know what treatments are available/approved up here rather than in the States; just as I am very pleased to hear what's going on south of the border!

    Take care, all, and I send you the best for Groundhog Day, whether you follow Wiarton Willy or Pucksatawney (sp?) Pete! I love Groundhog Day ... makes me think that spring is on its way.


  7. Dear Clare,

    Whatever the outcome from this setback, do keep the wonderful close relationship with your Mum as long as you can. Even when my husband fell into a coma towards the end, I used to put my head on his pillow and whisper into his ear. (There were others around and some of the things I wanted to say to him I did not want others to hear.) My husband was a Star Trek nut, so about 7:25 pm I whispered to him that I would turn on Star Wars on the TV if he wanted, but that our daughter was there and she wanted to see the baseball game, so would it be okay to watch the ball game instead. He smiled very slowly and said it quite clearly -- the first words he had said in 3 days -- and he said "Play ball". So I know that even though we all thought he was non compos mentis, he really wasn't, and he could still hear and even (at least that once) respond.

    Just as the ball game came on the screen (at 7:39 pm) he squeezed my hand and I leaned over to listen and to see if he might say something again. He said one sentence ..."I'll save you the seat next to me on the Voyager..." then took a single deep breath and stopped breathing and his heart stopped. I know he's now off travelling the universe with Capt. Picard and the crew. So keep talking to her, you never know what they may hear or be thinking late in their journey.

    Having said all this, I hope your Mum may find the strength to recover and have more time to spend with you. Peace to you and your Mum.


  8. Dear Mary, I do hope that you managed to have a good time on your birthday. I have not written to you before mainly because I was a caregiver, not a patient, and I never know how relevant my experience may be to those that are going through this, rather than observing and supporting the person who has cancer. But your most recent post really touched me, since my husband went through two cancer diagnoses and treatment sequences while battling the monster. I don't know whether this works for patients, but my husband used to spend a lot of his down moments "visualizing" the cancer and telling it (sometimes aloud, sometimes in his head) that it would not win and he would beat it into the ground! Sometimes he accompanied his thoughts with some physical action too, like digging in the garden ("uprooting" the cancer) in the spring/summer and shovelling the snow ("pushing out" the cancer). it worked for him for 18 years before the second cancer (lung) took him away from us. He got copies of his CAT scans and PET scans so that he could visualise it clearly and have a picture of it in his head to concentrate on. So each time he had a scan done, he viewed it as an opportunity to get a better visualization, rather than worrying whether it was growing or stable or shrinking. You could try it ... it can't hurt and may help you to fight off the scanxiety.

    Best wishes for controlling your concerns and for a good result of the scan too!

    Jane


  9. I am so sorry for your loss. :( I know how lost and alone you must feel. You did all you could, and cared for your Mom with great patience and kindness: may this thought bring you some consolation. Wishing you peace and hoping for healing for 2013.

    Jane


  10. I'm coming in very late and am a patient, not a caregiver, but I did want to say welcome. I'm sorry you have the need to find us here, but this is a great place to to come, as you can see from many of the family members and caregivers here that understand what it is like.

    Diane said exactly my thoughts, except I was the caregiver for my husband of almost 40 years. I found this site and joined in early 2008 and, like Michelle, I found it was almost a lifesaver, literally, during the last year of my husband's life and after as I travel along the grieving path.

    Welcome to you. I am sure that you will find it very supportive for you here. Talk, ask questions, vent ... we will be here for you.

    Jane


  11. :DAbsolutely the greatest news I've heard recently, Bud! This should make it an especially merrry Christmas and New Year for you and your family and friends. Raise a glass of fizzy water :lol:and enjoy this holiday season.

    Here's to your continued good health!

    Jane


  12. Absolutely wonderful news, Donna. Congrats to you on 15 years, and here's hoping that your husband will continue to have success with his chemo. This will be a Christmas for everyone to celebrate!

    Jane :D


  13. :cry: Oh Eric, I am so sorry that your sister is so ill. My thoughts are with you and your family. It is comforting to know that she seems to be pain-free. Being an only child, I can't imagine how sad it must be to lose a baby sister with whom you grew up -- you being her (no doubt) adored big brother in whom she could share all her happiness and tribulations. I am now the only one of my generation of my husband's family except for his elder brother, and David has virtually adopted me as his little sister. (He actually introduced me to his brother, then my future husband.) He speaks often of his brothers, and how he always expected to be the first of his family to go, not the last, and I know how very sad that makes him. Anyway, sorry to ramble on, I just wanted to let you know that my heart is with you as you go through this difficult time.

    Fondly,

    Jane


  14. Thanks for bringing your thoughts to this topic, Katie and Dianew. I agree re the loss of so many in such a short time is a problem but I think there is more to it than that. One problem that really concerns me is the amount of spam we get coming through on the boards,, and then how it is handled. From what I can see, the tech side appears to be removing not just the spam but the entire post, thereby wiping out all posts. If you are a new poster and a spammer has posted either before or after you, your post too will be removed. And if someone is trying to reply to a previous post, their answer will also disappear. Is there a way to (1)stop much of the spam before it is posted, or (2) limit the removal to the spam message? I really think this may be another reason that there is so much less conversation on these boards than there was, say, a year ago.

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