Lyn

lindaw · 02-25-2006, 08:31 PM

Haven't heard from you for a while are you ok?

love
linda

Lolly · 02-25-2006, 09:27 PM

Yes, I'm wondering the same. I was going to post the same question but Linda beat me to it! It seems I remember you were going to have to change oncs as Boris was leaving for the UK? Anyway, let us know, we miss you

<3 Lolly

Lyn · 02-26-2006, 07:29 AM

Hi guys, thanks for caring, no I am not ok, Boris is only on holiday for a week or so thankfully and if I need too I can see a stand in, never had one yet I could rely on. I have herceptin on Tuesday. I just returned from the Holiday from Hell, and I now know why I wasn't excited about going in the first place with 18 friends and family, a couple of days into the cruise and I slipped on deck, flat on my back, slippery floor so I don't know yet if I have any new fractures, I had a MRI on the Friday before I left on my neck and spine to see if any mets, I get those results tomorrow, I am glad I didn't cancel the MRI for the 6 March, it seems we went through a cyclone and I was so sick, if I could have got to top deck I would have jumped off. My daughter had a compacted wisdom tooth on the cruise, luckily I had meds with me to help with the pain and inflammation so I have to take her to the dentist tomorrow. I am still knocked around from the dry reaching and vomiting, I never experienced anything like it during my treatments and I was taking my nausea meds, the good prescription ones, so I don't have much faith in them anynmore. My hubby was also sick and we shared a cabin with my so called best friend of 17 years and our daughter. They say you never really no someone until you live with them, she complained about the pettiest things and was totally put out when she wanted to watch a movie in the middle of the day, Ron was laying on her bottom bunk, shortest route to the bathroom and I was half dead on my bunk, seems we were a little too inconsiderate for her, apparently we should have carried on as if we were looking forward to watching a movie with her as well, she wanted Ron to climb up onto his top bunk with a bucket, didn't matter about the other end of his body, it seems she had a whinge to all of my relatives, whom she had nothing to do with before and managed to gain their sympathy, even to the stage my sister questioned me today wanting to know where Ron was all of one day it seems they never saw him, implying that he was having an on ship romance, if they had bothered to see how I was they would have seen him on the bunk next to me. The same sister carried on to my daughter when my daughter didn't want to purchase a photo we had taken, that was because I had already seen the photo of me and my daughter and I said no way do I want to have a photo where I look like that, I am not photo genic, she then bought it herself trying to make my daughter feel guilty by saying that this may be the last holiday I have, news for her, it won't be cruise I can guarantee but I am going no where, it seems the more elements thrown at me the stronger I get, I now know why I had stopped talking to her for so many years, we only got back together when our dad died in 2003. Ron was trying to pack our suit cases while he was ill, and my so called friend came in for her gear and just stepped over him and said she was staying in my other sisters cabin, and never spoke to me again, not even a goodbye. My other sister and sister in law came and finished the packing and just assumed we would know they would because we would have done the same thing for them, their love is genuine, and of course the friend and my first sister bagged Casey the whole time. Well I ache all over like I have been run over by a steam roller, I can't get enough energy to stay out of bed for long and I am going to have to drag myself to the dentist with Casey first thing in the morning, a plus is that I can get my results at the same time. I am having FNB on Tuesday, I went on the Friday to be told that the times were wrong and I was 1/2 late, not by my diary I wasn't and I told them I have been doing this long enough now to know, any way they refused to do it, said the doc was snowed under with sutches, yeah right during my appointment time, so I walked out and refused to make another appointment, when I got to the first port on the cruise I made the appointement at another branch, so at the moment nothing is looking rosey or positive. I will let you know my results tomorrow of the MRI. And to top it all off, I probably already mentioned it, my son's partner of the last 3 years, has decided she wants to be single again, they just purchased a home together in November and she wants it all, the one in the middle is the 4 year of step daughter who we may not see again, she was like our very own and I found it very upsetting. Well I am going to take all of my pain meds now and go back to bed.

Love & Hgus Lyn

Barbara H. · 02-26-2006, 09:56 AM

Wow!! What a vacation in the negative sense! You certainly are a survivor, Lyn. Now that you are home I hope that you can heal and get some of your energy back.
Thinking of you,
Barbara H.

chrislmelb · 02-26-2006, 04:12 PM

Oh Lyn, you poor thing. Bloody friends!
I have been meaning to post a message for ages regarding one of your posts. When people were writing what they do in the other part of their life ie employment, you said that you tell people you are a cancer experiment. Well that really tickled my fancy and i still laugh about it now when i recall it.
Now you can try to relax a bit and look after yourself.
Take care
Christine

Lolly · 02-26-2006, 10:03 PM

Lyn, I am just sitting here shaking my head...that really WAS the vacation from Hell. Your former "friend" really needs a swift kick in the keister for treating you all that way. But I've discovered that like you say, people's true colors come out when faced with adversity. Your sister and "friend" showed theirs, for sure. YOU, on the other hand, came through with humor and strength of character intact. You are amazing. Hope you feel better tomorrow, and let us know asap how the tests came out.

<3 Lolly

TriciaK · 02-27-2006, 05:11 PM

Lyn, I am also shaking my head in disbelief!! What an experience! All I can say is that often a crisis+time=humor, though it may be a long time before you can laugh about this one! I hope you know we are all on your side and rooting for you! Hugs, Tricia

Lyn · 02-28-2006, 01:10 AM

Well, Well, it only got worse, I got the MRI result and I will paste what I sent Deborah, and if I have missed anything I will add it on.

Hi Deb, I thought I lost that post, it came up as an error, so something did go right but that was all. I picked up MRI result, can't use arm because I have a tumour on C3 C4 and a mass wrapped around the chord, wasn't quite sure what to do because my onc is away until Friday so I faxed it to the trial onc Jason and he rang back in a panic with instruction for me to get to ER it seems that I am endager of becomming a Para even Quadraplegic, well my low blood pressure went through the roof, lucky I still had steroids I had to start them immediately, they kept me in hospital until today and I had to go straight to the Big Private Hospital 50ks away where I have my radiation, I am no stranger there, I have had over 100 doses, he looked at the MRI and was going to compare where I had not been treated, it seems that even radiaiton in the wrong spot can tip me over so he wants me to see a neuro surgeon at the same hospital I have my Herceptin, good thing I know them there, but he is convinced that he won't be able to remove it either and may only be able to remove the pressure giving it more room, but that also means more room to grow, but there is light at the end of the tunnell it seems the Rads onc is getting a new machine in April, thankfully I can say April is only 4 weeks away now, it isn't the gamma knife but similar so maybe the cyper knife if not the same thing but it is for brain tumours but he doesn't feel there would be a problem for the spinal chord so I put my hand up as first guinea pig. The things that go through your mind, the MRI was done before I fell on the ship so hopefully there is no more damage, I have to restart my eostrogen blocker which I stopped in September with the new chemo, maybe a coincidence but I got all of the arm and pain problems in October which stands to reason if the tumour was growing. Well I only hope my so called friend feels real bad when she finds out, it was only after that fall that I started getting ill so maybe not all sea sickness. I am home now but none the wiser as to what will happen, I still have it in the breast as well so will be looking at Gemzar. All I could think of was no one can do the internet banking, the power, phone you name it bills are all due to be paid, I don't even know where my will is let alone how the insurance is, so I figure I will have to stay longer on this planet just to sort out things. One saving grace was that my rads onc wants to see me in 2 weeks, I thought well that's a relief I will still be here then and still walking God willing. It may be easier for me to cut and paste this reply just so you don't have to read it again. Talk to you soon.

I think that just about covers it, but not so sensitive relatives were at it again, I had to argue that the photo they all thought was wonderful was one I hid and gave Casey instructions not to buy because it looked like I had a stroke down one side, but they kept saying it was lovely, I said yeah only because I am alive in the picture now take a closer look and they agreed that my face wasn't how I would like it to be, so I said when you bury me at 90 put a phot of me at 30 on my grave, then my other sister said what will Ron do if anything happens to you he will have to get a job, like what he has been doing all these years, she tried to explain she didn't mean it that way and I said maybe not but the rest of the family will take it that way anyway, and she is just worrying that I won't be able to make her daughters weeding on the 17 March, I don't want to go so maybe a good time to bail out, can you believe it the wedding is going to be like the feuding hill billies and while they think it is wonderful my 86 year old mother is going to be a brides maid, she had a fall the same day as me, but flat on her face and she looks like Phantom of the Opera and she takes a long time to heal, the brides brother has just got out of jail and is on home detention but trying to get an 8 hour pass for the day, he was born from the Devil's Sporne that kid since the age of 2 he was setting fire to houses so half of them I don't speak to either so I don't need the grief, I have convinced myself I am not going, I take a horrible phot anyway and the bride is size 24 that is big over her like 130 kilos and my daughter was going with me and they do not look like cousins so I don't think they really want anyone to out shine the bride. Well I have to get to the pharmacy now and get my Aromasin without a script and owe him one. Talk to you all soon, yeah, I had my blubber day yesterday so I am kind of back on track, I think once you know you aren't dieing tomorrow there are always more tomorrows.

Love & Hugs Lyn

Lolly · 02-28-2006, 10:07 AM

Lyn, I'm sending you BIG HUGS to help you get through the next few weeks. I sincerely hope and pray they are able to get you the FIRST appt. with the new focalized rads machine. In the meantime don't let your relatives get you down. Easier said than done, I know, but you have to take care of yourself for the time being until you get this situation under control.
I am sending MORE BIG HUGS!

<3 Lolly

TriciaK · 02-28-2006, 10:19 AM

Lyn, My heart just aches for you! I will continue to pray for you, as I know many others will. Take a deep breath and don't think about anything or anybody but yourself and your immediate close family. You don't need to have anything to do with the rest of them, and forget the wedding! Do only what you want and need to do. Inspite of all you've been through your indomitable spirit still shines through! I know if anyone can make it inspite of all this, you can! Hugs, Tricia

Cindi · 02-28-2006, 12:04 PM

Lyn,

Geez, it just doesn't get any easier for you, does it? You're soooooooooooo deserving of a break.... this sucks! what a truly rotten cruise you had, words cannot convey my shock in your friends attitudes....unbelievable.

Really MAD that you now have to deal with this C4 business...that STINKS!!!!!! I am praying that these rads knock this mass right out ASAP.

Glad to read that you had your "blubber day"....God know you deserve more than one day.......you're one tough cookie, that's for sure.

Hang in there....I'm praying for you, as are so many others.

Cindi.

StephN · 02-28-2006, 12:57 PM

...get talked into a "group/family" vacation?? Rarely do these work out even when the families are on good terms. Nice gesture on your part to give of your energy that way (she says marveling at Lyn).
If I were you, that wedding would get dumped over the cliff as far as I were concerned. You have much more pressing and important things to work on and spend your energy on. Don't let these sapsuckers turn your attention away from the main business at hand. Just make sure they know the REAL reason you are not partaking - you don't want to "outshine the bride!"

I just know you will do fine with the new rads machine. As long as the techs and docs are firmly well-trained on it. It is one thing to be eager for treatment, but I would want to know that another person survived their ministrations.

Get your rest - or take a couple of days away where it really is restful. I know such places exist in OZ. Prepare for another round with this sneaky pernicious disease.
Knock 'em dead, Lady.

lindaw · 02-28-2006, 01:12 PM

Dear Lyn

What a time you have had. I am so sorry relatives have made it more difficult at a time when support is needed. But know we are here and wanting to support you like you have for us so many times.

love
linda

lu ann · 02-28-2006, 08:09 PM

Hi Lyn,

I sent you a long e-mail and it came back undeliverable. Can you send me another e-mail with your address? Maybe I copied it down wrong from your profile. Mine is ludysmith@yahoo.com.

I'm sorry you had such a horrendous vacation. I used to get sick on Lake Erie when my father in-law had his fishing boat. Atleast I new when not to go out and if I did the trip was short. I couldn't imagine being on a big ship, getting ill, and being stuck out there.

You have alot going on right now, I'll keep you in my prayers.

Love and Blessings
Lu Ann

Lyn · 02-28-2006, 09:59 PM

Hi all, in true cyber space form I sent my sister an e-mail declining the wedding, my hubby wouldn't go and that is why Casey my daughter was, I think if I went I would out shine the bride because I would tell them all what I really think or slap one of them. The good part of the cruise I suppose was that getting sick made me lay down and not do anymore damage to myself if that is possible, and someone must have been shining on me to let me get up from the fall and still be walking so I truly believe I am not done here yet and I do need to be able to type. I started my eostrogen blocker last night, I took 2 which is double Aromasin and I haven't needed my oxycontin 15mg today yet I have just been taking maintenance paracetemol every 4-5 hours so I truly believe the blocker is taking the pressure off, fingers crossed, I am seeing my onc Boris and now Bruce on Friday and having Herceptin and looking at and hopefully starting Gemzar on Friday as well with a minute dose of Taxol to keep the FDA big boys approval. The onc Bruce wasn't too happy me having to wait 2 more weeks for the rads onc and he said he did not know of a neuro surgeon at my hospital, then there is still Jason with the trial drug but that means stopping all other treatment which is a worry, so I think I will go with the tried and trie chemo first then got radical if necessary, at least I am out of hospital and I can get some sort of organisation back into my life if that is possible. Talk to you all soon and I will keep you posted.

Losve & Hugs Lyn