Hi Ian
hope all goes well this afternoon.
((((Love and hugs to you all))))
Anglise
This is about out beloved Dansk
by mouthy 606 Replies latest jw experiences
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Sunspot
Ian,
I'm SOOOO glad that you *did* have your visit from your daughter! I've been checking twice a day to find out how "it went" and found nothing. I have been on pins and needles thinking that there had been a snafu in the works, and I didn't want to ask about it either on here or in a PM. (Started to write at least a dozen times and though better of it) If it was uncomfortable to talk about it, I didn't want to pry or want to upset you any further.
I only just discovered your mention of it this morning! (whew!) I am relieved that it went so well, considering that I had imagined all *sorts* of things when not hearing anything. I have no idea how I missed that---what was it---a week ago? It seems if one goes to the kitchen and back, the threads are raced back five pages!
I'm tickled for you that the visit went smoothly and everyone got benefits from it---with the "opening" there for more to come. THAT says a lot! It didn't appear to be one of those "obligatory" visits that are all stiff and with everyone sitting around looking like deer in the headlights! Very encouraging, all in all.
I'm wishing and hoping with everyone else here, that you finally find full support in your new doctor and that all goes well with him too. We're all pulling for you---and we love you.....
hugs,
Annie
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Alleymom
Ian, thanks for posting the link to the Torn Apart thread with the update about Stephanie's visit. I was afraid I had missed it.
Sorry you had a crummy night :-(
Hope today's appointment was encouraging!
Hugs, Marjorie
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Dansk
Dear All (and with thanks to Joe, Latte, dmouse, shotgun, Sirona, Anglise, Annie and Marjorie for your good wishes),
I was pleasantly surprised when I met the professor. He wasn?t at all as I expected (I had a picture of a stereotype ? bald head with half-moon glasses). Girls, you would have swooned! This guy had movie star looks and was radiantly healthy. I could just imagine all the female medical students jostling to get to his lectures and be on his team. The professor also had a very affable manner. I just hope his manner remains the same throughout any future meetings as my first doctor was ok initially.
Well, I had to strip to my undies and the professor had a good prod around ? including a feel of my testicles. I didn?t mind that so much but why oh why is there always an attractive nurse ? plus a young female doctor ? looking on ? OK, they?ve seen it all before ? but one?s eyes invariably look down at the region and I don?t wish my doodie to be compared in their minds!
The Prof. told me that I was full of disease and that I shouldn?t delay treatment for much longer. Unfortunately that treatment means chemotherapy. The "good" news is he didn?t recommend the same protocol as the haematologist. He recommended that I go on a phase III trial with some other drugs ? and chemo! I am steadfastly against chemotherapy because it does no good against MCL. Believe me, if I thought it did I?d be first in the queue.
I have 3-4 weeks before I go back and I thought it was good of the Prof. to tell me to ?phone in straight away if I felt unwell (the other doc never said that). The point is, Christie Hospital is a centre of excellence and so there are more things available. I?m glad I got my second opinion and the Prof. said he was going to re-examine my biopsies to make doubly sure it is MCL. He said some lymphomas look like MCL but aren?t. I pray with all my heart it isn?t MCL!!
Claire and I left his office after another handshake and we both felt we could work with this guy. I only hope he is always on my case and not some understudy.
I had to go for a blood test and a chest x-ray before finally going home. The blood test was awful. I was in the chair when a nurse said the usual "A small scratch!" Well, if that was a SMALL scratch I?d hate to feel a big one! The nurse punched that needle into my arm and then waggled it about so much I felt it was going to come right through my vein. She called another nurse over and told her that she?s pushed the needle right in but that there wasn?t any blood coming out. This senior nurse had more about her and asked if it was hurting. I said she could continue but the pain got to be too much and she took the needle out. This nurse then wanted to try again and so I asked her to use my left arm (I felt my right had had enough assault and battery for one day). The nurse proceeded and the job was over in a minute. What a relief. I really hate needles now. That?s the second time in a few weeks I?ve felt like the needle was going to exit out of my arm and I wonder where they train these people or how they are allowed to continue after training. Believe me, it was not a pleasant experience.
After my blood had been sucked and with two coverings instead of one (and to which the first nurse asked me to cover them up as it might frighten the other patients ) I went for my chest x-ray. If only needles were as painless.
After that, it was a meetup with Claire who?d gone ahead to our car as our parking time had expired and we went shopping at an organic supermarket.
All in all not such a bad day after all.
Thanks for reading and, especially, for your loving concern.
Ian
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Joe Bloggs
Well that's pretty good news, Ian (apart from the needles!) Isn't it incredible though that there can still be any doubt about the diagnosis after so long? But of course that could be a good thing, if in fact it isn't MCL. I know it must be tempting to hope that the diagnosis is wrong, especially since you were originally diagnosed with lipoma (incredibly), not lymphoma at all. Did the professor give any indication at all as to the possibility that it may not be MCL? I mean, wouldn't that just be fantastic! Anyway, he should be the expert on these matters, so who knows, eh?
Oh and I was wondering if you discussed your concerns that chemo does no good against MCL. If you did, what was his opinion?
All the best Ian.
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Angharad
Glad it went well Ian and that this doctor seems more willing to listen to you - Fingers crossed for that slight chance they were wrong about the diagnosis.
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Dansk
Thanks, Angharad
Joe,
Oh and I was wondering if you discussed your concerns that chemo does no good against MCL. If you did, what was his opinion?
He said some people do better than others. It depends on how fit one is. That is no good to me. I read about the many people having had the chemo treatment to fight this disease and they aren't doing too well - unless they are in their late 60s-early 70s, where they seem to fair somewhat better, but not always. People of my age seem to suffer the worst! Chemo is definitely no good against MCL. I asked the Prof. that if his children had what I had would he give them chemo. He was diplomatic. He said he wouldn't because they were his children, but that he'd explain what it was all about and let them come to their own decisions. To me, that smacked of not being a keen advocate but giving it to others because that's the protocol.
Ian -
Joe Bloggs
Hi, Ian. This was quite revealing too:-
I asked the Prof. that if his children had what I had would he give them chemo. He was diplomatic. He said he wouldn't because they were his children
Well that says a lot for giving chemo to fight MCL! You've sure done your research, Ian!
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waiting
Dear Ian,
I'm so sorry to read (just clicked onto this thread) about your physical problems. But it sounds as if you're taking the lead with your doctors to figure out the best course for you. Congratulations on being active.....not proactive.
Patio is my sister, and went through chemo, etc., for cancer 'bout 5 yrs ago. She's fiestier now than she was before (if that's possible.) I know different diseases account for major differences in how to treat the body.....but if you haven't been in contact with her (she's so busy with her Social Life) - please do - fabulous one to talk with.
waiting
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waiting
ahhhhhh, see Patio's already posted to you! Well, I'm never known for a "timely fashion".
waiting