Remision??

sandycee

Last Friday someone asked "are you in remission then?" I didn't know how to answer them. Fortunately my partner was with me and changed the subject.

Then on Sunday someone else asked me the same question. I said "I am now cancer free" as my surgeon had told me he took all the cancer out and it had not spread to my lymph nodes.

Then I went to get a script filled at my chemist and the pharmacist asked me if I was in remission now? I vaguely answered yes.

Am I in remission? I don't understand that I can be in remission - I am cancer free. I have been through 4 cycles of chemotherapy and now am taking the tamoxifen. That will be for the next 5  years. In the mean time the cancer could come back, though the statistics that I was told this would happen are so low down it I am more likely to be hit by a car or have a plane accident!

I haven't heard the term remission for a very long time. My surgeon told me there is no cancer in your body. So I am not in remission - more that I am cancer free.

Is it easier to go along with these people who do not understand what I am going through? To simply agree - Yes I am in remission. That to me sounds negative. I would rather say - I am cancer free. I am a survivor of breast cancer. Though yet an early survivor - none the less, a survivor.

I had to lose one breast in order to continue my journey of life. I had to endure the cyclic chemotherapy. I had to endure the various visits and stays in hospital due to infections and have daily blood tests when I am suffering severe needle phobia. I had to endure being in isolation with a not so clean bathroom along side of me and missed one lunch all together because the nurses simply forgot I was there.

All of that - I survived - and am still here to tell the tale. I will celebrate Christmas this year with a different feel. though I will be sad to not be doing anything special.

I feel lost and confused about what to do. I was looking forward to celebrating in some way - having a party -yet our house is still in the nether of renovation mode. Perhaps I can tidy up and we can start on the painting. Perhaps we can just disappear down the south coast for a picnic like we did in the old days.

Perhaps....

Allicat

Hi sandycee

Someone asked me "are you out of remission now". This was a confusing thing to say as I could tell by her tone that she meant "are you recovered now" whereas being "out" of remission would mean the opposite - that the cancer had come back. I said "yes" because that seemed to fit what she meant and she was happy with that answer.

I am not in Remission because that means that the cancer is expected to come back. When people ask if I am cured I generally say "As far as they can tell".

I had chemo & a mastecomy. Have 2 more sessions to complete my year of herceptin treatment and 4.5 more years of tamoxifen. When people ask if my treatment I generally say it is but sometimes I mention "apart from taking drugs for 5 years"

To most people I seem to be recovered and I am mainly physically recovered but I am having trouble getting my head around everything and getting back to feeling normal.

This year for Christmas the plan is for the family to come to my house for the first time. Then we are going away for a week afterwards. I am looking forward to having a break away.

Best wishes to you & merry christmas

 

sandycee

Thanks for your reply Joy. It makes more sense. I haven't heard the term "NED" before. I will use that in future.

I also like your acronym of "PFS" for your own Stage 4. It is a very positive outlook on your breast cancer. Knowing that it CAN be Managed and Controlled for Years and Decades - "MCYD" is very positive thinking. You inspire me to be more positive about my own life.

thank you again for your reply.

Love and blessings

Sandy xx

sandycee

Hi Amanda, thanks for your reply. People are amazed when they look at me and tell me how good I look. They say things like "You look so healthy" and "You'll get by" Apart from me wearing scarves of "bandanas" on my head, you wouldn't know anything was "wrong" with me. Which it isn't - except that I have had the worst 6 months of my life.

However you too are inspiring me. I too have begun to say when asked "how are you feeling" - "I am feeling fine/great thanks, and how are you?" I like to ask the end question back so that it throws them and it also lets them know I am not dwelling on my pain and suffering. Which I so want to get over.

I am happy to watch the Christmas Carols on the Tele - for you, I wish you a MOST WONDERFUL evening at the Myer Music Bowl, and am also wishing like crazy for fine weather - a stary night, and great seating for you and your family. 

Love and Bright Blessings

Sandy xx

sandycee

Hello Allicat - I love the cat icon

Thanks for your reply. I agree with you about the trouble of getting your head around everything and getting back to feeling normal. That is the hard bit for me now, that the hospital visits are just about over - the monthly ones anyway.

The better you look, the more people think you are now okay. As one of my support group friends said to me yesterday - you have been through hell and back with your body taking all the damage, and your mind trying to get over the shock of it. Give yourself time to recover, it won't happen over night - however it will happen slowly. Relax, rest, and don't over do anything.

Love and Bright blessings

 

Sandy xx

sandycee

Thank you ladies for your wonderful thought provoking support and ideas.

I am sitting here still in my jamas and it is 2.32pm. I haven't really got up yet - perhaps I will before my partner comes home from work to tell me that I could have been busy today.

For me, getting back to "normal" is living as I did before my diagnosis. It really isn't happening and my good friend from my support group told me that it probably won't ever happen. My life has changed irrivocably and irreversably. How can "normal" be normal any more?

I don't think I could be as brave or inspiring as you Joy, or Amanda. I am grateful that my cancer was caught very early even though it did mean I lost my breast in order to live. My surgeon said "you don't have a choice - you will lose your nipple anyway - we may as well take the whole breast" My inbuilt desire to live won over and I said "YES" to him, though I wanted it as a last resort not first. Oh well, I am alive and well. Albeit I have still my bad days - most are good as I wander through life post chemo - and still taking tamoxifen for another 5 yrs telling people that my treatment is all over and smiling at them as though I am happy to be alive. I am - they say "it wasn't that long ago that you were dianosed, and you have come through it all well - I am proud of you" 

I am proud of myself too - though I still want to cry sometimes when I re-live what has happened in my mind. I know I am truly blessed to be where I am today. I just wonder if I will ever find "normal" again.

I wish you all a most wonderful and happy Christmas. Make it the best you have ever had, no matter what. Then make every Christmas there-after the best again and we will all win our battles.

Love and Blessings

Sandy xx

sandycee

Thank you ladies for your wonderful thought provoking support and ideas.

I am sitting here still in my jamas and it is 2.32pm. I haven't really got up yet - perhaps I will before my partner comes home from work to tell me that I could have been busy today.

For me, getting back to "normal" is living as I did before my diagnosis. It really isn't happening and my good friend from my support group told me that it probably won't ever happen. My life has changed irrivocably and irreversably. How can "normal" be normal any more?

I don't think I could be as brave or inspiring as you Joy, or Amanda. I am grateful that my cancer was caught very early even though it did mean I lost my breast in order to live. My surgeon said "you don't have a choice - you will lose your nipple anyway - we may as well take the whole breast" My inbuilt desire to live won over and I said "YES" to him, though I wanted it as a last resort not first. Oh well, I am alive and well. Albeit I have still my bad days - most are good as I wander through life post chemo - and still taking tamoxifen for another 5 yrs telling people that my treatment is all over and smiling at them as though I am happy to be alive. I am - they say "it wasn't that long ago that you were dianosed, and you have come through it all well - I am proud of you" 

I am proud of myself too - though I still want to cry sometimes when I re-live what has happened in my mind. I know I am truly blessed to be where I am today. I just wonder if I will ever find "normal" again.

I wish you all a most wonderful and happy Christmas. Make it the best you have ever had, no matter what. Then make every Christmas there-after the best again and we will all win our battles.

Love and Blessings

Sandy xx

pisces_tas

hi sandy, yes think a NEW normal. it took me some years and i went through emotions such as you explained. i remember going for a walk to look at the cataract gorge in flood in launceston, and just starting to cry..well not sure if i felt glad i was alive, fear if i  would stay that way, ( one day i WILL die ) wonder how my  life would pan out, concern about having my family go through things also, because of the BC; amazement at nature etc...

i went through stages of loss, grief, denial, anger, sadness, acceptance. i mean, we will all die sometime.. just maybe not today.  do we all go around scared and fearful, or just live the day. what makes you happy?

in time it has become easier, to put BC in the background. it will never completley go away, but that is ok. i still get concerned at yearly mammograms and ultrasounds.

i never used remission myself, i just said .".l will have to wait and see ".. even now i say..".well so far, so good." the lay person.. does not understand all the treatments and outcomes.

 amanda, i hope the sidney myer music bowl carols, is a memorable night for you, and your family.

i have days now when i am not so happy, for some reason, such as pain/ discomfort, or i feel tired; and others when i go " WOW ! "

i try and take pleasure in small things.. a beautiful sunset,  a lovely flower, a  kind smile or wave, saying hello to someone, knowing you might have made their day a little brighter, or listened to their concerns.

 thanks for the post; merry xmas. kathy.

pisces_tas

hi sandy, yes think a NEW normal. it took me some years and i went through emotions such as you explained. i remember going for a walk to look at the cataract gorge in flood in launceston, and just starting to cry..well not sure if i felt glad i was alive, fear if i  would stay that way, ( one day i WILL die ) wonder how my  life would pan out, concern about having my family go through things also, because of the BC; amazement at nature etc...

i went through stages of loss, grief, denial, anger, sadness, acceptance. i mean, we will all die sometime.. just maybe not today.  do we all go around scared and fearful, or just live the day. what makes you happy?

in time it has become easier, to put BC in the background. it will never completley go away, but that is ok. i still get concerned at yearly mammograms and ultrasounds.

i never used remission myself, i just said .".l will have to wait and see ".. even now i say..".well so far, so good." the lay person.. does not understand all the treatments and outcomes.

 amanda, i hope the sidney myer music bowl carols, is a memorable night for you, and your family.

i have days now when i am not so happy, for some reason, such as pain/ discomfort, or i feel tired; and others when i go " WOW ! "

i try and take pleasure in small things.. a beautiful sunset,  a lovely flower, a  kind smile or wave, saying hello to someone, knowing you might have made their day a little brighter, or listened to their concerns.

 thanks for the post; merry xmas. kathy.

sandycee

Hi Kathy,

I understand exactly what you are talking about. Thanks for the post too. You hit it right with the mixed feelings. I thought today to myself, I am now entering into denial - have been here for a little while - though I didn't know it. That's what it feels like.

Though I don't want to super anylise it as it gets really messy - emotionally. I think it is best to take one day at a time.

By the way, I remember going to the Cataract Gorge when visiting Tassie too many years ago. We went on the chair lift across a couple of times - it is beautiful out there. Hard to believe it is so close within Launceston. Oh how I miss beautiful Tasmania. I would love to come down there for a holiday one time, however finances do not permit that yet - not even a holiday close to home, so shall have to settle for picnics and taking our two mad dogs with us, down the south coast near Wollongong, or further. 

Have a great Christmas

Sandy xx