by mouthy 606 Replies latest jw experiences
Annie,
Word of caution: Do NOT climb up onto the roof to try and see how soon you can see them approaching in the distance!
LOL! No, I know fully where you're coming from. I'm the patient. They can jolly well come to me
I'm under illusion. Stephanie is now a dyed-in-the-wool JW so I'll be tactful. I don't want to scare her off, but I've already told her not to come round to give me a lecture. She promised she wouldn't, so we'll see what happens. Little steps, eh!
Hugs,
Ian
Hi All, I went to see my haematologist this afternoon, armed with a batch of e-mails from the Mantle Cell Lymphoma group I'm a member of regarding taking Rituxan (Rituximab) without chemotherapy as a first line of treatment, but he just didn't want to know and point blank refused to give it me without CHOP (a form of chemotherapy). I took the information supplied by the MCL group out of my bag, the research reports supplied by one member, I felt, being particularly persuasive - but the haematologist steadfastly refused to even look at it! Once again, I felt severely patronised. The conversation continued to go around in circles, he advocating CHOP + Rituxan or nothing at all and me politely asking to give Rituxan alone a try. In the end I was given the name of an oncologist, a professor, for a second opinion at a hospital some distance away. For those in England it is Christies, Manchester. Once again, I cannot believe the haematologist's attitude. I was quite sore today with a large swelling over my pectoral muscle and told him so, yet he didn't appear interested as I wouldn't accept the protocol! He wouldn't accept the information I brought with me as he said it was 'unscientific' - and yet I told him that I had scientific evidence in my bag. Again, he wouldn't look at it. What further amazed me was that he said they give Rituximab (Rituxan) with CHOP but they have no idea what use it does!! How scientific is THAT!!! So, now I have to wait for another interview, this time with a new doctor. I feel like I am being worn down to take the CHOP + Rituxan, that I shall be in such pain or discomfort that I will beg to take it! I don't want chemotherapy. I don't necessarily want the Rituxan. But surely, as it's my body, I should have the ultimate say rather than someone telling me he knows what's best for me (with absolutely no evidence what-so-ever that it is. Believe me, I've researched!)! Sorry if this appears as a vent. Actually, I'm not venting at all. It's all so humorous, but at the same time so utterly serious. What on earth do I do if the professor refuses to give me Rituxan alone? I guess I'm just going to have to proceed with my own dietary regimen. Sincere best wishes to all, Ian
**Sorry if this appears as a vent. Actually, I'm not venting at all. It's all so humorous, but at the same time so utterly serious.
And who has a better right to vent???? (That is--IF you were) LOL!
Practically being told that your opinion is worthless--is always frustrating, especially when you have something to "back it up" as you did.
Just wanted to send more hugs for your pain and for your frustration with doctors...
{{{{Ian}}}}
Always,
Annie
sounds like you had a meeting with a jw and he didn't want to hear what you had to say, so closeminded. anyway, glad to know that your humour is still there.
Its great that your doing a lot of research and getting information to help you cope and fight through this hurdle in life.
love
cj
Hello Ian. Your experience reminds me of that movie with William Hurt "The Doctor". He was a doctor who thought he knew it all... until he became a patient.
I remember how humiliating it was for him, to have to deal with doctors, who were patronizing even with him.
Hope your visit with the professor goes better.
Love
David
Ian and Claire:
I have PM'd you but wanted you to have this to read tooI called Thunder and told him...I guess he saw the thread but just was too choked up to reply.
I just want you to know we are here for you...you go with your gut do not go with a Doctor that will not care for you as a whole person. The Doctor should have listened and respected your choice...your best in the hands of someone that will work with you.
We will praying for you and sending good energy your way....
Hugggggzzzzzzzzzz
Sheila N Thunder
PS PM me your phone number I'd love to talk to you after our many many PM's
Ian,
Perhaps someone at the support group can offer a referral to a physician who WILL support your wishes and at least give your treatment preferences a go. It wouldn't hurt to ask.
A big part of any healing process is feeling empowered, rather than controlled. We've all spent too many years as JWs being controlled and having our choices dictated to us. This is not the time go back into that victimisation mindset. Yes, the haematologist sincerely believes he has your best interests in mind, but as you said, he doesn't know anything else. In that respect, his mindset is not much different than the WTS.
I'm still doing some checking round for you whenever I have the opportunity. I'll let you know if I find anything hopeful as soon as I do.
Love, Scully
Annie, CJ, David, SheilaM & Thunder & Scully,
What truly wonderful people you all are.
Annie:
Just wanted to send more hugs for your pain and for your frustration with doctors...
(((((((((Hugs)))))))) returned a thousandfold!
CJ:
glad to know that your humour is still there.
Sometimes, it?s all I?ve got!
David:
I remember how humiliating it was for him, to have to deal with doctors, who were patronizing even with him.
I never saw that film, but it sounds great. I think all the patronising doctors should experience what it?s like. Some pedestals are just too high!
Sheila & Thunder:
I just want you to know we are here for you
That is something I?ve never doubted! Thank you!!
Scully:
I'm still doing some checking round for you whenever I have the opportunity. I'll let you know if I find anything hopeful as soon as I do.Thank you. I am so grateful for your hard work.
So many people have been extremely kind. What would I have done without you all! Checking your comments is the highlight of my day.
Love,
Ian
Ian,
When I first read this post, I really wanted to reply, but everybody else puts it so much better than me. Plus I couldn't stop crying - I am a real wimp!
You were one of the people that helped me make my decision to leave the WTS. You have always come across as a strong, 'say-it-how-it-is' sory of guy and I am honoured to know you.
My sister is a herbalist and she speaks about this fruit/veg drink that people with cancer take and it is apparently very good. I'll get the details and PM you. I am a sincere believer that we can fight off illness through diet - I know the most important foods for this sort of thing are broccoli and oranges (apparently) if I PM you and get your address I will send you the catalogue where this stuff can be ordered.
Take care and stay strong - you really are on my thoughts all the time. A dear friend of mine (she is only 19) is going throgh similar circumstances and we are trying her on the organic drink. It may work for her - it may work for you.
I am sending lots of positive thought your way and I am praying (to something - I'm not sure what).
I hope you and your family stay positive - you'll beat this - I know you will.
Warmest love
T
SM62,
I logged on this morning and found your message. Guess what! It gave me a REAL lift. I suddenly felt a surge of strength. The vibes and prayers everyone is sending REALLY work!! PLEASE DON'T STOP!
I checked my pm box but there's nothing in it, so if you did send me a pm it hasn't registered.
Love and best wishes to everyone on the forum,
Ian
