Im back!

by montana96 8 Replies latest jw friends

  • montana96

    Hello everyone again. Its been a long time since my last post and i had been enjoying it so much!

    Tragedy has struck our family. My jw elder father has been diagnosed with a very rare leukemia called multiple myeloma with amlyodosis. It is uncurable but he could go into remission with blood and blood products,which he wont do of course.

    My sisters and I are very frustrated as he is still trying to go to meetings,witnessing and next week go to the District Assembly. We had told our parents we arent happy with this as he leaves himself open to many infections as most witnesses will go to meetings sick!.Their answer to us is that the witnesses are their family too!

    My dad has been sick for a few years which has led to this diagnosis. If he had the time to rest his body,instead of working flat out,being an elder etc etc,his body could have recovered some what.

    Has anyone experienced this disease and been treated successfully without blood. I fear time is running out for him, I also fear the wt will change its view on the blood policy eventually(or just hoping) to a conscience matter but it may be too late for our father.

    Your tthoughts appreciated and its nice to be back

    Regards Mercedes x

  • Toronto_Guy

    welcome back...

    all the best to your father...Its not an easy situation for sure


  • AuldSoul


    I think Montana is looking for any input on coping with this illness without blood. But I'll bet comments would also be welcome on coping with the situation.

  • Dismembered

    Greetings montana96,

    That same type of situation just happened to a former close associate of mine. He was only 34 or 35, and, was all out for watchtower ("elder" "pioneer, blah blah blah etc.). Due to watchtower indoctrination, he refused a simple blood transfusion which, I was told, could have saved his life. Instead, he's dead. For no reason at all. Tell your dad this. Watchtower doesn't give 2 shits that he's dead, and if your dad happens to live near a cemetery tell him to take a walk through it and read the years that have past with ones who've been in their graves eons, prior to CT Russell even being embryonic. When your dead, your dead for a long time. I hope you can change his mind. Sorry for your dads demise, and if my attitude sounds harsh. Try to convince your dad that if he dies, it will be for nothing.


  • Dansk

    Hi Mercedes,

    I'm truly sorry to learn of your father's rare form of leukaemia.

    I don't know if you've been following my own story but for two years I battled another rare blood disorder known as Mantle Cell Lymphoma. I refused all types of conventional treatments because I wanted to try and cure myself through the use of natural remedies, including organic food and homeopathic remedies. For a while I seemed to be doing ok, but a tumour under my left armpit kept on growing and eventually reached the size of half a melon and I literally couldn't put my arm by my side.

    I didn't want to have chemotherapy because I knew it was toxic and as well as attacking the cancerous cells it would also damage healthy cells. Around 18 months into the disease it was obvious my body was falling apart. I had fluid taken from my left lung, twice. The second time I was admitted as an in-patient and the nurses drew off 6 ltrs of fluid. I knew I had to do something.

    When I went home I was extremely weak and could no longer climb the stairs. I became a virtual skeleton and the cancer had moved into my face and was affecting my breathing in the nasal passages. It turned out I literally had only a few weeks to live.

    Coming so close to death all I could think about was my younger son at home and my beloved wife, Claire. I desperately didn't want to leave them behind and, as my attempts at curing myself were obviously not working, I consented to have chemotherapy.

    The treatment itself was easy to take - but on three occasions I was violently sick. The other five treatments I had, with the last three especially, went without a hitch, as though my body had become accustomed to the treatments. I went into complete remission and my consultant haematologist decided it was the best time for a stem cell transplant (SCT).

    I had what is known as an autologous SCT, which means I had to sit in a chair with tubes in both arms while the stem cells in my blood could be filtered out (rather like dialysis). The whole process is completely painless (except for the needle going in) and takes around 4 hours. I then had to wait for a bed to become available and, after six weeks, one did and I was admitted. The following week I received chemotherapy every day for seven days and then my stem cells were transfused back into me. The idea of the chemo is to kill any cancer cells that may still be around and then the stem cells are put back to virtually make a "new body".

    I mention this because there were many leukaemia patients on my ward - indeed, it was called the adult leukaemia unit - and they, too, had stem cell transplants. I don't know for sure but perhaps your father could have the same treatment - but it would mean storing his own stem cells taken from his blood.

    I was supposed to be in hospital for around three weeks but I ended up with acute renal failure and had to stay hospitalised a further 4 weeks. During my entire hospital stay I had around four blood transfusions. Your father, however, could still have the SCT and refuse the blood transfusions - but I wouldn't recommend it!

    The point is, I have come through two years of hell. The disease took its toll on my entire family and Claire and I even talked of splitting up once I had recovered enough. After 27 years of marriage you can imagine how we both felt - but I emphasise it was the disease that had been putting us under so much pressure. I had an idea Claire was suffering, but it was more than anyone can imagine. While people were concerned over me, hardly anyone - especially the medical staff - asked how Claire was coping! It turned out she was exhausted and devastated.

    Again, I tell you this to be of help because never think your mother is truly coping. She will need comforting as much as your father, if not more. Your mother will need all the help you and your siblings can provide.

    Happily, I am getting back to full health, have been given the all clear and, best of all, my marriage is as sound as ever

    Your father definitely needs to be treated. The blood issue, I feel, is one you will probably not resolve - but he could still have SCT.

    I wish you, and especially your father, a wonderful happy outcome.



  • Crumpet

    Dansk - I'm sure Montana will be able to relate to your experiences - thanks for sharing in such detail.

  • montana96

    Thankyou for all your comments especially Dansk. We are looking at a stem cell transplant as well which my father will have. He has started Chemo and has more next week then my parents will be going to a gruelling 3 day DC in Sydney. Im sure this will help his health!

    My Mum is not coping well and is pushing us away. She is not talking to anyone about it not even her friends in the congregation.I am in touch with the Leukemia foundation so I will ask how to deal with helping my Mum.

    Another question. My father told us he felt like a failure as a father because none of his kids stayed JWs. HE can see we all are genuinely happy and have done well in our lives. Should I talk to him about it or just spend as much time with him as I can?Or do you think hes making us feel guilty so well all come back before he dies?

    Another thought; Being a JW we always had the hope of the resurrection,I dont know what to believe anymore and this isnt helping me cope very well as I fear I may never see my father again.Any thoughts would be appreciated.

    Cheers Mercedes x

  • BlackSwan of Memphis
    BlackSwan of Memphis

    I'm not sure if you have mentioned before if you are spiritual at all any more.
    My thoughts are pretty simple:
    We don't stop. We move on. All the energy that makes up who we are, who you are, who your father is, it moves on.
    Will you see your father again?
    I don't think anyone can answer that for a certainty. But I think that our loved ones stay with us if we need them. They will continue to be there for us if we need them to.

    I'm so sorry about your dad. I'm glad he's looking at the transplant.
    Your mom is probably so numb. Every person is so different in how they deal with things like this.
    Just be around her to listen if and/or when she needs to talk or cry. It might be as simple as your presence that will comfort her.

    Big cyber hugs to you Montana.


  • parakeet

    ***HE can see we all are genuinely happy and have done well in our lives. Should I talk to him about it or just spend as much time with him as I can?***
    Bringing up this subject may add more stress to his already stressful condition. But you know your father best.
    I have no idea about what happens after we die, except for this: Wherever our parents go after they die, that is where we eventually will go too. It's not much, but I find it comforting. Best of luck to you and your family.

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