This is about out beloved Dansk

by mouthy 606 Replies latest jw experiences

  • Alleymom
    Alleymom
    You have a great attitude and you have taken a very courageous step in not taking chemotherapy

    Did I miss a post? I thought Ian was starting chemo tomorrow.

    ((((Ian, Claire, & family))))

  • Dansk
    Dansk

    Dear All,

    First off I would like to offer you my heartfelt thanks for your continued support and best wishes, on and off-list. I?ve had pms as well as telephone calls and they all mean so much to me.

    Secondly, I apologise for not replying so regularly of late but, as you can imagine, my head has been swimming with everything that?s been going on. I have been carried along on a tide of emotion and good intention. While the days are slowing down (they really are!) the speed with which I have been led to accept the advice of the doctors has been staggering. I needed to take stock of the situation; to step back and say "Hey! Wait a minute. Give me time to think!!"

    I joined a Mantle Cell Lymphoma list which has, I believe, around 700 people on it, both sufferers and family/carers. Some of the stories are heart-breaking; people have been through so much. Last Monday, after seeing my surgeon, I came home depressed and logged on to the MCL list. A 49-year-old MCL sufferer had died leaving a widow and two children, aged 7 and 10. This, on top of the gloomy outlook portrayed by the surgeon, who is a really nice chap, made me feel as if my situation was virtually hopeless. The whole thing was getting to Claire, too, and I just wanted to someway turn back time.

    Then, the next day, Tuesday 29, June, I received an e-mail from an MCL sufferer who stated:

    "??you probably have a bit of time to research your options. MCL is classified as incurable and for the most part always comes back after awhile. The second time around, it is much harder to control."

    The standard treatment for MCLers is chemotherapy and, usually, some other drug(s). The trouble is, I?ve noticed that most have had various on-going treatments but Mike, who sent the e-mail, has been around for two years now without any treatment what-so-ever. Now, Mike has lymph nodes growing all over the place, but his spleen is normal and he lives a normal life. The point is, the average life expectancy with this disease after taking chemo is 2-3 years. Some are living more than twice as long now and, sadly, some are surviving less. I wanted time to review my options.

    I have been perusing numerous websites regarding MCL and chemotherapy. I found little information MCL ? what I did find wasn?t much different to what I already knew ? but the information on chemotherapy made me reassess what I was doing. You see, my gut feeling was not to have the chemo ? and this wasn?t just because of Mike?s e-mail.

    This makes sobering reading and is only ONE of MANY articles condemning chemo: http://www.domaincountry.com/articles/health/treatments.shtml

    The article, entitled Are Cancer Treatments Effective - The Real Story © By Lena Sanchez, makes very interesting and sobering reading! I read much more on the subject and came, I believe, to an informed decision. I decided to telephone my haematologist and cancel my chemotherapy appointment. I wanted to check out alternatives. If all else fails, I can fall back on chemo.

    My haematologist is completely against me refusing but says he?ll go along with my decision. He said things you?d expect from someone who is blinkered towards chemo. Make no mistake, he?s a good doctor, but I wish he and others would look further afield. My arguments were, of course, rubbished by him and I?m to have a long chat with him next Thursday, 8 July.

    I e-mailed Mike and let him know. Mike replied and this little paragraph was put at the bottom:

    "I can tell you this, I've watched MCLer's come & go, and very very few died from the cancer. Most succumbed to the weakening of the body caused by repeated treatments."

    THAT?S something I can?t help feeling is true. MCL is a terrible disease with no known cure. Doctors don?t have any answers so they whap it with chemo because it works with Hodgkin?s disease and most Non-Hodgkin?s Lymphomas. But MCL is not like other lymphomas. It?s the worst of them all! I don?t feel whapping anyone with chemo and other drugs is the answer if the prognosis is still poor afterwards.

    Mike finished his message with: "My aim here is to diminish your sense of urgency. You will be around for many years to come."

    I believe that to be true. The amazing thing is, when I took control of my situation a huge weight on my shoulders seemed to dissipate. I feel happy and healthy and am determined to fight this disease with all I?ve got.

    I?m seeing a homeopath next Tuesday and my regimen is starting to take shape. In a strange way I am excited about all this. I believe there is one other person on the MCL list who is not taking any treatment. The disease affects people differently. Like all cancers it?s a scourge ? but I liken it to a wake up call. My body?s defences were struggling and that was because of my lifestyle. I have never been a drinker or a smoker but my diet left a lot to be desired. I was never one to eat much fruit and vegetables. Now, I eat like an African antelope on the plains!!

    Tracy, Christian Observer and Sirona have sent me some wonderfully uplifting pms this week and I shall reply so please check your in-boxes.

    Latte, a GREAT BIG THANK YOU for coming round THREE times to offer help.

    ISP, wonderful talking with you, too, on the telephone last night. I know it wasn?t easy for you, my friend, but you made it! (ISP is responsible for my being here on JWD )

    Marjorie, you?re ever so kind continually keeping tabs on this thread. I love you for it ? as I do Andi, Special K, Shotgun, Christian Observer, Country Woman, Gumby, desib 77 and frenchbabyface for their latest messages of continued support.

    I am going to keep this list for posterity. I?ll print it out one day and, right at the end, I intend to say:

    I?M CURED!!

    Love to you all.

    Ian

    X

  • Dansk
    Dansk

    Tracy, Christian Observer, Sirona and LT, you all have pms.

    LT, thanks for your pm AND especially your telephone call. They mean so much.

    Love,

    Ian

  • Lady Lee
    Lady Lee

    OMG Ian I had not looked in here for a very long time.

    Well being in control is a really huge thing. It will affect how you deal with this and your stress levels. Information and decisions. They need to be in your hands

    ((((Ian and family))))

  • Latte
    Latte

    Dear Ian....your strength is amazing!

    It certainly sounds as though Mike knows what he is talking about - great that you are now getting the info which you sorely needed.

    ((((((((((Ian, Claire & family))))))))))

    xx

  • bebu
    bebu

    Dansk, I've been on vacation, and am now finally catching up with your diagnosis...

    I'm so sorry to hear about the seriousness of this cancer. I'm so glad to know that you have good friends with you there, and folks like Andi (and perhaps others here!) to offer practical ideas and help and hope. And all the messages and cheer and comfort and encouragement that you could ever need on this site.

    Also, please keep writing here and sharing what is happening with you. It is likely a good thing for you to express yourself as you need, but surely it is a good thing for the rest of us as well, that we might be able to listen to you, encourage you, and lift you up in our thoughts and prayers. Which we all do now.

    ((((((Dansk))))) and ((((((Claire)))))) and (((((boys)))))) ----and (what the heck!) (((((doggies))))

    bebu

  • Dansk
    Dansk

    Thank you Lady Lee, Latte and Bebu,

    Yesterday started off ok but by the evening I had a good moan. Poor Claire, she has to listen to my whinging!

    I wasn't feeling sorry for myself, believe me, but the frustration of this disease and my aching shoulder at the time just made me let off some slight steam - which I can honestly say is the first time since I've been diagnosed. I want to write everything down here because it has become something of a diary for me - but unlike diaries I get feedback, from YOU!! That makes my diary special. It talks to me and fills me with inspiration.

    This morning I feel great. The dogs ran upstairs to greet me and Sally, six months, jumped up and licked me so happily that I couldn't stop laughing. We call the dogs "the girls" because they are two bitches and, I have to say, they keep my spirits up.

    I hope one day to have my real girls, Jody and Stephanie, back in the fold and out of Borgdom for ever, but that seems highly unlikely at this moment. I don't despair. They still don't know about my condition and, as I've mentioned before, I'd rather it wasn't used as an emotional lever. I prefer honesty in people.

    What many of you won't know is that I get pms, e-mails and telephone calls from a number of people here and they help build my spirits up no end. Tracy, it's a date! Shotgun, that was a wonderful pm and I appreciate all the research you did. Andi, what can I say? You've been a star and I know you are working hard on my behalf. LT, your prayers are very welcome!! So many caring people - more caring than I've ever known. I know, we're all family here

    I still keep reading the messages that appear on the MCL list I am subscribed to and at least four people have come out and mentioned that the sufferers who have died did so from complications brought on by the treatments (mainly chemo) rather than the disease itself. That's a GOOD reason not to have the chemo!!

    Most people with or without having chemo tend to treat the disease as a chronic one rather than a deadly one. It's how they get along. I'm different. I don't teat it as a disease at all. I just get on!

    Without your help my situation would be dire. Your comments and support keep the gloom away and help me live my one day at a time. I am convinced a cure is possible, but doctors need to get away from the toxic poisoning of chemo which destroys the immune system, if only temporarily. My attack is different. I am trying, and believe I am succeeding, in building up my immune system. It's working for me and I am feeling much better. Chemo would wipe that out overnight!

    I wish you all a fantasmo weekend and may you all have happiness and excellent health always.

    Love,

    Ian

  • Latte
    Latte

    Hey....Ian!

    Great that you are feeling so good today

    may you all have happiness and excellent health always.

    ....right back atcha dude!

    Ltte

  • BluesBrother
    BluesBrother

    o k , I must admit that I have just found this thread, having had a few minor problems at home that prevented me posting for a few days until yesterday

    Dansk, May I add my profound and sincere good wishes for a full and speedy recovery . You are a good man, we need you here! Your posts in this thread have made me humble . Keep up the fight and I am sure that you will beat this thing

    http://http://www.bristolcancerhelp.org/ ... That is a link to the Bristol Clinic. No doubt you have already checked the site , but I only mention it because my sister in law found it a helpful place to visit when she was diagnosed with cancer.. That was perhaps 10 or 12 years ago, but she is still here , alive and pretty much well

    take care mate....

  • Alleymom
    Alleymom

    btt

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