darya

I had forgotten about this kind of interaction until I had my recurrence.

Someone pestered me recently in this same way and I felt so strange. He kept asking me if I was okay and I kept saying I didn't know but he persisted as if trying to force me to say it would all be alright.

Now I think it might be good just to say "I'm sorry, I can't reassure you." 

I had to interject here about the "normal" thing.

I saw a card that said on it "The only normal people are people you don't know very well."

That really made me laugh! I think that's so true.

I'm wondering if anyone has ever experienced anything like this before.

Namely, have you ever had swelling in one of your remaining lymph nodes -- eg. further down the armpit toward the arm -- after a swedish massage?

I've had 20 nodes removed and have only the mildest of lymphedema, namely a very slight swelling in my hand that comes and goes.

I went for a swedish massage the other day and the following day my lymph node was greatly swollen.

I'm making the connection but i'm not sure if the massage had anything to do with it.

The reason it's so concerning is that my cancer has recurred in that lymph node and I just had an ooph to try to control the growth, since an AI and zoladex were not working. 

I would say the node is a little smaller today, which would support the massage theory. I thought perhaps there was an increase in lymph fluid that could cause the swelling. On the other hand, I have massages quite often and have never had this happen before. It was just a general back massage.

I also have three small injuries on my affected hand, namely two paper cuts and a tiny burn from an iron, so I'm hoping maybe my system was overloaded.

Does anyone have any thoughts?

Thanks a lot,

Darya 

bumping thread for SueG

Hi Mason,

Is your oncologist actually recommending the ooph? Or is it the gynecologist? Perhaps what the surgeon is saying about the date in November reflects her unwillingness to do the surgery: in my case they feel the ooph is crucial -- i'm highly er+ -- and are doing it asap (I'm in Toronto too - I'm wondering if it's the same surgeon.) It doesn't sound like they don't think the mets are significant enough to remove, just that surgery is not the best option.

I've heard that some women with mets feel as if the doctors have given up on them, and I'm wondering if that's what you're feeling. I get the feeling that more pressure needs to be exerted in your case. Do you go to your appointments alone by any chance? I think it still helps to have a friend or relative along - almost to play good cop bad cop - they can be very forceful and somehow I believe they remind the doctors of how loved you are and how much people want you alive.

I know what you mean about looking and feeling fine, but it's hard to say if the way you look is affecting how they treat you. I always try to look as good as possible for appointments, with the hope that they'll see me as "worth" saving, and a friend told me that her friend who died of lung cancer had the same instinct. So I guess there are different theories. It's probably not worth expending too much energy on.

I'm also wondering which hospital is your home base. I'm at PMH and Mount Sinai and I find that they all know each other and see each other regularly and so they co-ordinate things quickly between them and everything can be done there. I got in quickly, for example, with my new oncologist because my surgeon bumped into him on the stairs and they discussed my case. Originally they were going to refer me to someone much more junior. I think it's human nature to care more about things that are not anonymous. As I say, I don't know where you are, but perhaps if you are at one of the outlying hospitals there might be some value in moving to PMH?

Take care. I'm sorry you're dealing with this dilemma.

Darya 

hi river,

 i had bone pain with taxotere - i believe it's one of the most common side effects.

when i was taking it with neupogen the bone pain was almost unbearable. it was better without the neupogen but still obvious. i'm sorry but i can't remember if anything helped with it.

sorry you're dealing with this

(btw, i heard someone say somewhere that if you went without a wig you were trying to draw attention to yourself - people can say some annoying things!) 

I agree - sounds like he's in denial and is somehow able to compartmentalize things. Sometimes I think friends and family just get tired of the whole thing and feel they've said everything they can on the subject.

People keep saying it and it's true - the trick is to figure out how to live with uncertainty. I haven't managed it at all: sometimes I'm convinced I'm doomed and other times I'm sure I'll live for many years and there's nothing really to worry about. It's that middle ground of not knowing I can't seem to hold...

BTW, I used to have perfect spelling and grammar too before all this. Now I make mistakes and words often look strange to me. Plus my handwriting has gotten really messy. Not sure if it's the chemo brain or if I've relaxed my vigilance or couldn't be bothered or what. It's a strange feeling though when good writing has always been part of your identity.

Also, you've been through a lot in the last five years! That's enough to shake anyone up. No wonder you're unnerved.

Hi Krissy,

You get to recognize certain sensations after a while.

I really hope you don't end up with a second nightmare - you've been through a lot and so recently.

I'm learning to trust my own sensations more and more in all this - if I had to do it over I would have been more insistent about new and different sensations.

All the best,
Darya

yes, i've had cancer in the axilla three times now and i've always had pain - at least one of aching, soreness, throbbing, sharp pains etc.

people say there's no pain but that's not my experience 

I saw a movie last night in which a character had bc. I found myself running from the theatre in tears because it evoked such strong feeling in me.

Afterwards I felt better. As the character was speaking I felt as if I were hearing my own voice and seeing my own story. It made me realize how blocked emotionally I've been, how I've been unable to express what I've experienced, and how that's been making me feel lonely and alienated.

Does anyone know of novels, films, poetry etc that touch on bc in a way that resonated with them?

Unfortunately and ironically, if I tell you which movie I saw it may ruin the experience for anyone who's been planning to see it because it comes as a bit of a surprise (although my boyfriend said he had a premonition). Should I say anyway?