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Can I please vent?

AnneCan
Posts: 3692
Joined: Oct 2009

Hi everyone,

I am feeling pretty stressed. Last Thursday I had a CT scan, scheduled early because my CEA is continuing to rise. I get the results next Thursday (my cancer centre takes 2 weeks to turn the results around). I have had 2 chemo treatments in a row cancelled; my doctor is pretty sure my chemo (folfiri + avastin) is no longer working. If progression is confirmed I will be switched to erbitux + irinotecan, I think. I am very lucky to be KRAS-wild which makes me eligible for erbitux. And I know I am fortunate to have had a good run with folfiri + avastin. I am stressed; waiting to find out is brutal. I have also been sick this week; some kind of bug I think. So I have been in bed a lot, which makes me feel guilty.

On the bright side, my husband just made me a green tea latte, which is delicious!

Thanks for listening.

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

My dearest Anne I'm so sorry to hear about your chemo and on the wait of you ct scan . I wish you all the luck in the world I will be thinking of you . Hugs Tina

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

it is so brutal some times! Only thing I can say is that I pray for the best results with your scan!
Cheer up Anne!

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AnneCan
Posts: 3692
Joined: Oct 2009

My bed is fantastic - it is too comfortable! And I have television/DVD player + even VCR in our bedroon.

When I read your post, I felt a lot of comfort; almost like a hug wrapping itself around me. I think I had a bug, my husband wasn't feeling well either but he got over it faster. I don't think the stress helped though.

Thanks for everything, Graci. And your talk about buffalo has made me want to try it; I don't think I ever have.

AnneCan
Posts: 3692
Joined: Oct 2009

I am definitely trying to cheer up. Thanks for your good wishes.

AnneCan
Posts: 3692
Joined: Oct 2009

I really appreciate your wishes for luck + sending good thoughts my way.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Anne,

I'm sorry that you're going through what you're going through! I know the feeling- been there before. As you said, you are fortunate that you're kras wild-type & that Erbitux will be an option for you. I know that it does help many people- Phil has been on it for a few years now I know & he says it helps him.
I'm surprised that you have to wait 2 weeks to get your scan results- that's lousy! I'm not one for having to wait. Is it possible to go directly to the hospital or center where the films are stored and get it there directly? I used to wait at the beginning until I found out I can actually go to the hospital records room the day after my scan and request my report there myself & they have to give it to me. If I ask for it early at the oncology office, they tell me I have to wait until the doctor reviews it, which takes a few days sometimes. So, forget that! I just circumvent the oncology office and go get it myself- it's a patient's right! My doctor nows I do that now & so expects that I will have done that & now he doesn't mind at all.

Take care, my dear- brighter days are ahead & just because the CEA is rising, doesn't mean it can't turn around. Mine had been going up and up lately and finally just recently, it's gone down again (following a change in my chemo dose and also I've been doing some naturopathic cleanse things- I really believe that's what did it).

Hugs to you- stay strong!
Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

Lisa,

I really appreciate your kind thoughts. I don't think I can go around the onc for the results. My cancer centre that I go to for treatment is where the CTs are done. I think there must be an issue with a shortage of radiologists or something. A different radiologist also reads each part (chest + abdomen). It has been this long a weight since the very beginning, but because I know my onc thinks my cancer has progressed (my last scan showed a little tiny bit of progression + my CEA is rising), I am even more stressed than normal. My onc has been warning me for months now that a switch was likely to happen + has been watching my CEA + other things closely but I am still finding this period stressful. I am really happy for your decrease in CEA, that is definitely what I need to hear!

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

That's such a long time to wait for important information. I hope that your scans come back better than expected and am so glad that you can add erbitux to your treatment. Hand in there. We're all pulling for you. HUGS

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

at my new oncologists and it took 3 days before at my old one.....Its a difference Im sure on machines and technology available to them.....Its kind of a love/hate thing in that I love to find out quickly but I also hate that in a few minutes after my blood draw Im gonna know the verdict...Oh well, I still like it asap...gives me some peace of mind.....
and Anne....its not bad......until they tell you it is......and they haven't told you anything yet....enjoy your quiet time with hubby......love to you, buzz

AnneCan
Posts: 3692
Joined: Oct 2009

Thanks, I know you are right (aren't you usually?)

AnneCan
Posts: 3692
Joined: Oct 2009

I really appreciate the hugs + good thoughts + I think of you + your son often.

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

You go ahead and vent all you want. Been there, done that with George. George's cancer became very active last December and scans were about as bad as they could get, his CEA spiked to right around 200 but last week, down to 80. Whatever the scans are you can't change what is so go ahead and have another latte. Like George you have been in this fight a while with its ups and downs, so prepare yourself for any news you may receive (I know, easier said than done) and move on to the next treatment.

You, like my George, need a break from this crap and I always hope that will happen.

George had a flu/stomach bug a few weeks ago, combined with starting a new chemo, he felt awful but bounced back in about a week, so don't feel guilty about spending a few extra hours in bed, your body needs it.

Take care - Tina

AnneCan
Posts: 3692
Joined: Oct 2009

I am glad to hear George's CEA has come down - that is quite a drop! I appreciate all your good thoughts + hope George is feeling well now.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

I don't understand why some places take so long to read scans. The longest I've had to wait is one day. When I did folfox the first time I would have a scan on Monday and get the results on Tuesday - which was my treatment day.

For the last two scans I got the results within the hour. My doctor knew that we needed the info in order to know how to proceed with treatment and had lined up the radiologist to look at the scan with him as soon as it was taken. He had made me aware that the scan may be unclear, and that I would have to give the radiologist a day or so to really study it. In both cases it was critical to have the info as both scans showed that the chemo was failng and that further treatments on that particular drug were a waste of good tissue.

This is at Wake Forest. It's a big cancer center. It's always crowded and busy; and yet my onc figures out how to make it work. I don't understand why other places can't provide the same level of service. It really pisses me off Anne, that you have to wait so long.

How do you make a green tea latte?

Roger

AnneCan
Posts: 3692
Joined: Oct 2009

Roger, thanks for being so pissed off on my behalf; I really appreciate it! My scan results always take ~ 2 weeks. I go to the 2nd largest comprehensive cancer centre in Canada (in the top 10 or so in North America) + I get great care overall, but this is one thing that drives me crazy!

This is how we make green tea latte:

We use Matcha green tea. It is Japanese, which I have read is better for you than Chinese. Matcha tea is made with the whole leaves + is ground up finely. It is actually bright green in colour. There are several brands of this type of tea; the one I use is called "DO". You can google Matcha (Macha?) green tea + get lots of info. Because you use the whole leaf rather than just infusing the leaves in water, it is supposed to be higher in vitamins + antioxidants. It is quite expensive, might be cheaper in the US, but you only use a small amount + it lasts a long time. You add milk, vanilla + sugar + + warm up with the Matcha. It is very yummy! You can also just use this to make regular green tea. We buy it at smaller grocery stories with a "health section", but it can also be ordered on the internet.

By the way, your avatar looks delicious!

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Thanks for the recipe. I'l try it.
My avatar is a picture of a pastrami sandwich at Katz's Deli in NYC. It's the only place I eat pastrami. Can't get anything like it in NC. I've had 2 of these in my life. I took this picture a year ago when Kim and I went to Sloan for a second opinion on HIPEC and other options. Not exactly an "anti-cancer" lunch, but it's delicious. I put going for one more of these on my bucket list.

Take Care Anne.

Roger

AnneCan
Posts: 3692
Joined: Oct 2009

The picture looks like it is out of a food magazine; good photo! I haven't had a pastrami sandwich for a long time; it is hard to find a good one. When I was growing up my parents used to buy it from the grocery in plastic bags that you put in boiling water and then on rye bread - they were actually quite good. I might have to see if it is still sold like that. Montreal also has some great delis with great pastrami sandwiches. I hope you get to enjoy another one soon. Please let me know what you think if you try the green tea latte.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm sorry you're feeling so stressed, but it's understandable. Hope you'll be able to somehow get those results sooner!

*hugs*
Gail

AnneCan
Posts: 3692
Joined: Oct 2009

I really appreciate your good thoughts!

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

No need to feel guilty about taking some much needed rest. Your body lets you know what it needs. And any way, every gal is entitled to some 'pamper me' time.

Hope you can put aside the worries about the scan. After all, you can't change the results and whether you know today or next week, you know you are still in this fight with all your might.

Don't let cancer and all that comes with it get you down emotionally. Too many wonderful things to do no matter how much time is left for each of us.

Hugs,

Marie

AnneCan
Posts: 3692
Joined: Oct 2009

Your words are very inspirational. I am trying hard not to worry about the scan, but am having trouble not worrying. I am planning to have a really good weekend, though.

luvmum
Posts: 457
Joined: Dec 2010

Hi Anne,
I am so sorry to hear your current situation! I cannot believe you have to wait two weeks before you get your result! On my birthday (a few days ago), my mum had her PET scan and I was so nervous and anxious that I could hardly eat anything! I know it must be so stressed!y friend asked me not to take CEA and scan results too serious as long as there are plans lining up for you! She has been fighting for a long long time... so just keep you positive attitude and thoughts and you will be fine!!!
You are alway my support and inspirations! I will pray for you for a positive outcome!
Best,
Dora

AnneCan
Posts: 3692
Joined: Oct 2009

Thanks so much for your lovely words + prayers. I want to send good wishes to you + your Mum.

Love2Cats's picture
Love2Cats
Posts: 127
Joined: Dec 2010

I am sorry to hear that. Nothing is worse than having to wait and worry. I am thinking positive thoughts for you.

Sandy

AnneCan
Posts: 3692
Joined: Oct 2009

I really appreciate your very kind words.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

My dear Anne,
I think that the onc's, the radiologists, etc., I have the feeling that they don't understand our feelings on the Scans and the Blood Tests. Me, myself and I, really hate waiting to find it out each time. Three weeks seems like forever, since I'm always eager to hear good news, I want the "good news" time shortened.
I'm sure it'll be okay, but holding your hand and patting it occasionally as best I can cyberly.
You're in my thoughts, a prayer or two, and good vibes pointed in your northern direction!!!
Winter Marie

AnneCan
Posts: 3692
Joined: Oct 2009

Thank-you! I can use all the hand-holding I can get!

Erinb
Posts: 295
Joined: Apr 2010

Dear Anne,
I would want to vent too. I hope you get rid of the bug and feel better soon. If there is anytime to feel lousy and be in bed, it might as well be now during the winter.
Erin
PS I hope you don't live in the southern hemisphere.

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

ahhhh Anne I am so sorry that your wait time is so long.....we all hate it....

vent away do NOT feel guilty.....I agree with Graci.....just jump in that big yummy bed and pretend you are a Canadian gound-hog and you are not waking up till spring comes....

I am so glad you know you have possible chemo alternatives.....

the bug will go away.....it's everywhere here right now

hugs, mags

AnneCan
Posts: 3692
Joined: Oct 2009

I have never been one to lie around in bed + I find myself doing it a lot lately; I just can't get used to it.

Are the wait lines long at your cancer center?

AnneCan
Posts: 3692
Joined: Oct 2009

Thanks for your supportive words. I am in Canada, so definitely not in the Southern hemisphere. I love your avatar, you + your baby are gorgeous.

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

I have no cancer centre here Anne just a regional hospital with an onc.....my cea's have to go to Toronto and it is usually 2 weeks....

wait times for test are long....yes indeed....

mags

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

"The Waiting" is the hardest part - at least that's the way that Tom Pette tells it.

Anxiously waiting to hear your results. There is also VECTIBIX, which must be a distant cousin of Erbitux; maybe that one would be something to try as well. Not sure why some of us get assigned to one of those drugs and others get the other one. I tested "not wild" as well, so they have Vectibix in the storage room in case I need it.

I hate to hear you hurtin' but it's completely understandable that anxieties are on "high alert."

Nothing to feel guilty about either - you're sick and need the bed rest - just soak that in and take it for what it's worth - I'm sure you more than make up for it other times when you are doing better.

You've swallowed alot of chemo and I admire how many treatments that you have done; you are much stronger a person than am I:)

You know Tex is pulling for you like a piece of taffy; just want good things for you. I can't wait to hear back from you when you know something.

-Craig

AnneCan
Posts: 3692
Joined: Oct 2009

Thanks for your wonderful words. You are so kind. I have had a lot of chemo + I kind of feel worn out - don't know if it is the stress, the bug I've had or the chemo. It's probably a combo of all three. I really have a hard time dealing with being in bed this much; I know I shouldn't but I do. I feel like I am letting my family down. I really appreciate you pulling for me; I don't know what I would do without that. I am not stronger than you; I am constantly amazed by what you have been through. Thanks again.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Anne... I think all of these things you have mentioned are grounds for individual vents... so vent away!! I've never really paid attention to when my scans are ready or not... I figure, even if I could read them (which I can't), there's nothing that could/would be done until I saw my oncologist. For example... let's say I could go in the next day and ask for the scan image and someone to tell me what it means. If he/she said, "Well, the tumours in your lungs are twice the size they were at your scan 3 months ago". Ok, so that certainly wouldn't be good news.... but now I'd have that bad news in my head, figuring my tumours are growing at a fast pace even while I'm waiting for my oncologist appt. Of course, I'd be freaking out that whole time too because now I know there's a problem. By the time I got to see my oncologist, I would be a nervous wreck. So, I prefer not to know what the scans say until I'm in the same room as my oncologist. She could give me the bad/good news and then we could discus the next plan of action.

But, either way... whether you have to wait to hear what those results are, or you have to wait until you see your oncologist to find out what the next plan is... the waiting game is probably one of the worst out of all of the things we have to go through. And there's no way of of making that game go quicker. Darn it all anyways!!

Now... let's discuss that comfy bed and guilt :D I can soooooo relate to you on that one!! I have set up my bedroom somewhat like yours. I have a super comfy bed with a latex/foam mattress (two steps up from the memory foam mattresses). I also have one of the wireless remote adjustable beds so with a wireless remote I can put the bed up to the point I'm sitting up to read/eat/watch tv. Or any level all the way back to perfectly straight. Likewise with the foot of the bed. AND it has the built in massage under the mattress... very relaxing. Yes, I have a 32" tv, Blue Ray DVD player and the PVR... all in the bedroom. I also have all the cable stations... to the tune of something like 300 stations.. as well as all the HD stations. I have bookshelves on two walls... and I have about 50 books that I still haven't read, but each one is a book I really, really want to read. So from this, you can see that if one has to spend any length of time in bed, I have all the creature comforts.

But, I'm not used to spending a lot of time in bed. I have stuff to do and people to see, shows to see, rehearsals to get to, Media contacts to schmooze with, etc. I can be busy every minute of the day and evening (I should be working on the March 1 Theatre eNewsletter rigtht now!). So when I don't feel well... physically or because of stress, I DO have that lovely bedroom to hang out in... but I feel guilty. And I know I worry my two neighbours (friends) who come here every day to check on me, take my dog for a walk, clean the bird's aquarium, etc. When they see I'm in bed, then they know I'm not well... but sometimes it's just I don't have the energy. I might feel fine, but I have no energy... so I don't like worrying them.... makes me feel guilty.

But hey... if we feel tired or just out of sorts... we must give ourselves permission to just veg out and rest up our bodies.... even if that means a week of doing this. Whatever it takes.... but then once we get some energy back, it's back to the salt mines :)

Hang in there, Anne!!

Cheryl

AnneCan
Posts: 3692
Joined: Oct 2009

Your room sounds like mine but you have taken it up a few notches! I just upgraded my cable recently to be able to get more movie channels. I have books ALL OVER my bedroom. I haven't really been in the mood for reading though. I know I have to accept what my body is saying, but I can be stubborn. Fighting the situation does not help!

I am with you regarding reading the scans; I wouldn't know where to begin reading them! My onc's nurse even said the onc isn't great at reading abdominal scans, so how can I expect to be? That's what radiologists are for.

I always follow with interest your theatre tales; my oldest daughter is doing her Masters in Theatre Studies + I find it all fascinating.

Just curious; how long does it take you to get scan results?

Thanks + take good care!

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

excuse me anne....just for one sec to talk to that other canuck

cheryl are you using photos from your high school year book?????

you look fantastico

thanks anne :)

mags

AnneCan
Posts: 3692
Joined: Oct 2009

And I agree!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Anne... I was just trying to figure that out. I usually don't think about it much because when I get a scan, the important thing for me is when my next oncologist appt. is... but of course, she schedules that around when my scan was . I think there's usually a week between the scan and my appt with the oncologist. There was one time when she had not gotten the results from the scan because I had just had it done like two days before. But she called down to talk to one of the radiologists who then gave her a verbal over the phone... and would follow up with the report/results in the usual time fashion. I get all my scans done at the BC Cancer Agency, so they are right there on site (3rd floor) with the oncologists' offices being on the 2nd floor. Two totally different departments but all in the same building.

That's great about your daughter getting her Masters in Theatre Studies! I know when I was still in high school, I soooo wanted to go on to university and major in theatre, but my parents would not let me. Back in those days (early 70s) the only options they gave me were to become a nurse or a teacher.... that is all they would pay for. I wasn't interested in either, so I never went on to University. Little did they know, theatre was my passion then and 40 years later, it's still my passion. On the other hand, if I had pursued Theatre as a career, I probably would have ended up in film, like a lot of my friends did. Good money to be made there but no security. Now, I wouldn't have known way back then that I would one day end up with cancer... so who knows how I would have been able to deal with it since I probably wouldn't have had access to Long Term Disability Insurance... nor would I have the option of retiring with full pension at age 55. So, it all worked out for the best in the long run ;)

Maggie.... keep up those compliments and you will never be able to get rid of me!! LOL!!! The picture I have up now was taken this past Thursday. My hair is literally coming out by the handfuls now... well, even worse... I can grab on to a handful of hair and just slowly pull and it all comes out and I don't feel a thing. So this chemo somehow has released the hair from within the scalp and it just slides out with no pain. If I touch the top and sides of my head, the skin is very sensitive. But I can't feel a thing with the hair coming out. I go for my second chemo on Tues... with this much coming out now after the first treatment, I'm sure the rest will probably all come out by the second cycle. Soooo, the picture that I'm using for my avatar was the first time out in public with one of my wigs. And yes, I happen to like the wig... it's a hairstyle that I've always loved but my own hair would never be able to be cut like that. My hair has a mind of it's own and is too wild to be trained like that . Thanks for the high school yearbook compliment... I go to sleep a happy woman now :D (hahaha... can you believe, by looking at that picture that in 4 years I'll be 60 years old?? That just freaks me out!! Physically, I will be 60 in 4 years, but mentally, I stopped aging at 30 years) :D

Cheryl

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Indeed, LMAO, I quit growing mentally at 21!!! HAHAHA!!! I'm the youngest!!!! ROFLMAO

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi anne,

sorry about the rising cea and delays. i pray you get some relief from the stress.
maybe some meditation will get your mind off the results.

i hope you get heaps of peace and rest and soon your feeling better.

prayers,

pete

AnneCan
Posts: 3692
Joined: Oct 2009

I haven't really gotten into meditation; I should give it a try.

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