Coming to the end of my chemo

mum-of-four
mum-of-four Member Posts: 22
edited March 2014 in Colorectal Cancer #1
Hi everyone, I hope you don't mind me joining you. I'm from England, am 38 years old and was diagnosed with colorectal cancer Nov '05. I had to have my entire colon removed due to numerous polyps as well as the tumour (I don't have a "bag" though, which surprises many people). It had also spread to my lymph nodes but not to my liver or lungs. I have been staged as "Dukes C"

I started chemo in Feb this year and it has been a long haul, I have 4 young children (hence the user name!) aged 9 down to 3 and it has been tough for the whole family to get through this.

I'm on a combo of Oxaliplatin and 5FU and I was supposed to be having my last (12th) treatment today but my blood levels are not high enough (yet again!) so have to go back next week. I have had so many setbacks it is totally draining. The children are desperate for me to be "back to normal" and I had to tell them last night that I wasn't going in after all.

For the last couple of days I have been very tearful and emotional about finishing treatment. Don't get me wrong, more than anything I want this part to be over, but I think I'm now worrying about my impending CT scan results.

Is this normal to feel this way about chemo ending? Please reassure me as I feel I'm going crazy when I should be so happy!

Thanks in advance for any replies.

Comments

  • Moesimo
    Moesimo Member Posts: 1,072 Member
    I am also a stage 3 survivor. I didn't receive all my post op chemo because I was so sick and ended up in the hospital. I had severe diarrhea. I had only 4 out of 12 treatments. I only had 5FU and leukovorin. That was in Oct. 2003. It took a long tome for me to get my strength back. I think it was about 2 years. I had another surgery also in Jan. 2005.

    I remember thinking I was never going to feel normal again. It took along time, but finally I feel normal. Or at least my new normal.

    I still worry with every cat scan. I have them every six months. My next one will be in Nov.

    That you have small children must be tough. My youngest was 14. I hope that you are getting help so you can rest.

    Good luck as you finish treatments and welcome to our board.

    Maureen
  • spongebob
    spongebob Member Posts: 2,565 Member
    Ahoy, mum!

    You are not crazy at ALL! Perfectly normal as many here will confirm. Congrats on being almost done and ready to get back to your life with those four little ones who need their mum back.

    Hopefully your counts will be back up enough to go ahead and do that last treatment next week and you can be on with your life and leave this whole cancer thing behind you.

    You are quite young to have Duke's C colon cancer. What are the standards in the UK regarding family members getting colonscopies? here in the US the standard is 10 years younger than the age you were when you go sick. In my case, I was diagnosed at 37, but the pathology determined my tumors had been with me for about 4 years, meaning I go "sick" at 33 which means my kids will start getting scoped at age 23.

    Welcome to the SemiColons - you've found a happy positive group and a wealth of knowledge. And we're not all Yanks - we have others from UK, Australia, Hong Kong, Canada, and even the country of Texas (although they don't type English very well)

    Cheers

    - SpongeBob
  • jana11
    jana11 Member Posts: 705
    Of course we don't mind you joining us!! Good grief - it is the cancer support network. Nationality has nothing to do with anything!

    I was stage 3, now stage 4... and fighting.

    I was seeing a counselor when I was first diagnosed (at 32 years old). She was a cancer survivor herself and told me the hardest adjustment, after initial diagnosis is after treatment ends. You go from fighting mode to waiting mode - and the waiting sucks.

    Basically, any feeling you have is completely normal - never doubt it.


    Congrats on chemo finishing up! THank goodness no more oxali during the winter!! Whew. Take care of yourself and your family.... you will start feeling more normal soon. :)
    jana
  • mum-of-four
    mum-of-four Member Posts: 22
    jana11 said:

    Of course we don't mind you joining us!! Good grief - it is the cancer support network. Nationality has nothing to do with anything!

    I was stage 3, now stage 4... and fighting.

    I was seeing a counselor when I was first diagnosed (at 32 years old). She was a cancer survivor herself and told me the hardest adjustment, after initial diagnosis is after treatment ends. You go from fighting mode to waiting mode - and the waiting sucks.

    Basically, any feeling you have is completely normal - never doubt it.


    Congrats on chemo finishing up! THank goodness no more oxali during the winter!! Whew. Take care of yourself and your family.... you will start feeling more normal soon. :)
    jana

    thanks for the replies guys, my poor husband had no idea why I was crying - he was doing his best but just didn't "get it"

    Spongebob - the surgeon suggested my sisters had a check which they have all done and they were all clear. My children will also be checked but they didn't give me an indication of when that would be -

    I was also 37 when I was diagnosed and everyone I come across in the medical field says "you're so young"

    When I went back to my GP after the Consultant told me it WAS cancer, he said he was very glad he'd sent me for the test as all my symptoms were saying it WAS cancer, but my age was saying it wasn't. I'm glad he took me seriously!
  • Patrusha
    Patrusha Member Posts: 487
    Hi Mum!

    Congrats on finishing up the chemo. I've just started the Folfox 6 regime (Oxiliplatin, 5FU and Luecovorin---no guarantees I spelled that right!) so I'm at the beginning of this ride. It is completely normal, though, to sweat the upcoming results of your pending scans. I'd think you were a little batty if you weren't at all concerned.

    You know what strikes me? All of the "young" people who visit this board who have been diagnosed with colon cancer. I think the 50-year-old baseline is too late to start looking. I am hoping that they will move that up about 20 years, even for people who don't have a family history...

    Spongebob is correct (as usual, eh, Bob?). Your kids should get their first check at 27. Glad your sisters were all "clear" but make sure they repeat the test every five or ten years as recommended. I know a couple of my sibs had polyps removed...

    Welcome to the semi-colons. Sorry you have to be here, but glad you found this great group of folks!
  • KathiM
    KathiM Member Posts: 8,028 Member
    spongebob said:

    Ahoy, mum!

    You are not crazy at ALL! Perfectly normal as many here will confirm. Congrats on being almost done and ready to get back to your life with those four little ones who need their mum back.

    Hopefully your counts will be back up enough to go ahead and do that last treatment next week and you can be on with your life and leave this whole cancer thing behind you.

    You are quite young to have Duke's C colon cancer. What are the standards in the UK regarding family members getting colonscopies? here in the US the standard is 10 years younger than the age you were when you go sick. In my case, I was diagnosed at 37, but the pathology determined my tumors had been with me for about 4 years, meaning I go "sick" at 33 which means my kids will start getting scoped at age 23.

    Welcome to the SemiColons - you've found a happy positive group and a wealth of knowledge. And we're not all Yanks - we have others from UK, Australia, Hong Kong, Canada, and even the country of Texas (although they don't type English very well)

    Cheers

    - SpongeBob

    Hey, dad, do you consider my state of California also a country (according to its finances, it is the 4th most wealthy country in the world, on its own!). Too funny, thanks for the laugh.

    Your devoted daughter
  • usakat
    usakat Member Posts: 610 Member
    Hello Mum,

    Welcome to the SemiColons. As SpongeBob said we are a happy and positive group, but I will add supportive and caring too, where we do well at helping each other balance the ups and downs of LIVING with cancer. I think I can speak for everyone and say we're glad you are here.

    I can understand your being emotional as you finish your treatments - I expect I will react in a similar fashion. As I read your story all I could think about is how brave and tough you are, and because I'm struggling in the early stages of chemo, I'm inspired. I'm impressed you endured 11 treatments of Oxaliplatin! In my not so humble opinion that entitles you to Wonder Woman status. Thanks for your post.

    I think we all agree that feeling anxious and apprehensive about treatments and waiting on test results is completely normal. Normal, but it can certainly be crazy making. I remember a book published during the self-help, self enlightenment movement of the '80's titled, Feel the Fear and Do It Anyway. I never read the book, but the title stuck with me as a great way to live life. I discovered it's what cancer survivors do everyday. It's what you've done since you were diagnosed. You are a survivor.

    I bet you didn't expect when you came here for support that by virtue of your survivorship you would also inspire others. This is only one of the great things about this group. I'm still new here and in the short time of my being here I have met a new life-long best friend, many other friends, and a warm collection of the bravest people I've ever met. I hope you discover the same. Visit often and keep posting.

    Best Regards,
    Katie
  • steelerfan
    steelerfan Member Posts: 26 Member
    Hi, I also remember how down in the dumps I felt after chemo was finished. I had chemo and radiation before my surgery and 6 months of chemo after surgery (5FU/Leukovorin). I couldn't understand why I was feeling so low. Like you, I also was very tearful and emotional. I felt like I was in limbo. Everyone kept telling me that I should be on top of the world because my treatment was over and very successful. I finally figured out that from the moment I was diagnosed, I focused on what I had to do to get over the next hurdle and what I had to conquer and all of a sudden, I didn't have a "next step" to worry about. I had won!!! It took me a month or two but I got through it. You will too--just give yourself a little time and try to focus on how great it is to be done! Let your precious little ones be your strength. Best of luck, Mary
  • spongebob
    spongebob Member Posts: 2,565 Member
    KathiM said:

    Hey, dad, do you consider my state of California also a country (according to its finances, it is the 4th most wealthy country in the world, on its own!). Too funny, thanks for the laugh.

    Your devoted daughter

    Well, your governator is an Austrian and doesn't speak very good English and about 2/3s of your population doesn't speak English at all, so maybe I should!
  • spongebob
    spongebob Member Posts: 2,565 Member

    thanks for the replies guys, my poor husband had no idea why I was crying - he was doing his best but just didn't "get it"

    Spongebob - the surgeon suggested my sisters had a check which they have all done and they were all clear. My children will also be checked but they didn't give me an indication of when that would be -

    I was also 37 when I was diagnosed and everyone I come across in the medical field says "you're so young"

    When I went back to my GP after the Consultant told me it WAS cancer, he said he was very glad he'd sent me for the test as all my symptoms were saying it WAS cancer, but my age was saying it wasn't. I'm glad he took me seriously!

    Check out the Colon Club (http://www.colonclub.org or http://www.colondar.com) It's an organization devoted to educating young people and their doctors about early colon cancer. All of the models for the Colondar were diagnosed under the age of 40. many of them were/are in their 20's.

    We're getting the word out to the doctors - now we need to educate the US insurance industry.

    Cheers

    - SpongeBob
  • spongebob
    spongebob Member Posts: 2,565 Member
    usakat said:

    Hello Mum,

    Welcome to the SemiColons. As SpongeBob said we are a happy and positive group, but I will add supportive and caring too, where we do well at helping each other balance the ups and downs of LIVING with cancer. I think I can speak for everyone and say we're glad you are here.

    I can understand your being emotional as you finish your treatments - I expect I will react in a similar fashion. As I read your story all I could think about is how brave and tough you are, and because I'm struggling in the early stages of chemo, I'm inspired. I'm impressed you endured 11 treatments of Oxaliplatin! In my not so humble opinion that entitles you to Wonder Woman status. Thanks for your post.

    I think we all agree that feeling anxious and apprehensive about treatments and waiting on test results is completely normal. Normal, but it can certainly be crazy making. I remember a book published during the self-help, self enlightenment movement of the '80's titled, Feel the Fear and Do It Anyway. I never read the book, but the title stuck with me as a great way to live life. I discovered it's what cancer survivors do everyday. It's what you've done since you were diagnosed. You are a survivor.

    I bet you didn't expect when you came here for support that by virtue of your survivorship you would also inspire others. This is only one of the great things about this group. I'm still new here and in the short time of my being here I have met a new life-long best friend, many other friends, and a warm collection of the bravest people I've ever met. I hope you discover the same. Visit often and keep posting.

    Best Regards,
    Katie

    Well, YOU may be supportive and caring, but I sure ain't, so I don't wanna advertise it!

    ;-)
  • scouty
    scouty Member Posts: 1,965 Member
    Hi Mum and welcome to a wonderful place!!!!!!

    I was dxed stage IV March 04, surgery not an option so only chemo and did it as long as my body could tolerate it (8 months) and stopped before my onc wanted me to and went the alternative route. Talk about scared!!!!!!!! I am currently NED and have been since early Jan. My lung and liver mets went away on their own. The chemo started it but my diet changes, etc finished it up.

    Do yourself a favor and help your body recover from the onslaught of chemo while also cancer proofing your innards. Get the book "Beating Cancer With Nutrition" by Patrick Quillan. It will get you started on how to eat and drink smarter so you can teach your kids the same.

    Congrats on finishing chemo!!!!!!!!!! Celebrate!!!

    Lisa P.
  • usakat
    usakat Member Posts: 610 Member
    spongebob said:

    Well, YOU may be supportive and caring, but I sure ain't, so I don't wanna advertise it!

    ;-)

    Liar. liar, SpongeBob Smarty Pants on fire!
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    Hi Mum -

    Your feelings are entirely normal. I was diagnosed Stage IV with liver met in June 2005. Went thru 6 cycles of Xeloda/oxaliplatin/Avastin and then went on a "chemo break" starting in 12/05. My oncologist warned me that the most difficult thing might be not being treated - suddenly all that focus is lost and you just start waiting for the sword to drop - I definitely understand what she was warning me about. But, that was early December 2005, just a break, and here I am in September 2006 and I haven't had any additional chemo. So, while I still find it hard to not be treated (psychologically, not physically) it is getting more manageable. Meanwhile, more scans coming up in early October, so the stress is always there.

    So, congratulations on the end of chemo, and being Stage III, the chances are that is REALLY the end.

    Take care,
    Betsy
  • spongebob
    spongebob Member Posts: 2,565 Member

    Hi Mum -

    Your feelings are entirely normal. I was diagnosed Stage IV with liver met in June 2005. Went thru 6 cycles of Xeloda/oxaliplatin/Avastin and then went on a "chemo break" starting in 12/05. My oncologist warned me that the most difficult thing might be not being treated - suddenly all that focus is lost and you just start waiting for the sword to drop - I definitely understand what she was warning me about. But, that was early December 2005, just a break, and here I am in September 2006 and I haven't had any additional chemo. So, while I still find it hard to not be treated (psychologically, not physically) it is getting more manageable. Meanwhile, more scans coming up in early October, so the stress is always there.

    So, congratulations on the end of chemo, and being Stage III, the chances are that is REALLY the end.

    Take care,
    Betsy

    You know, something else occurred to me after reading Betsy's post... along with everything else, people's perception changes when you complete chemo. You are "cured" and they expect you to have your former vim & vigor and do everything that you could do before you got sick. Often that isn't the case. Chemo really knocks you down, and you stay down for months or even more than a year sometimes after you're "finished". Just remember not to push yourself too hard. You have just completed an ordeal of epic proportions. You are NOT 100%... you're lucky if you're 75% or even 66%. Take it easy on yourself and don't let people demand too much of you now that you're "well".

    - SB
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    spongebob said:

    You know, something else occurred to me after reading Betsy's post... along with everything else, people's perception changes when you complete chemo. You are "cured" and they expect you to have your former vim & vigor and do everything that you could do before you got sick. Often that isn't the case. Chemo really knocks you down, and you stay down for months or even more than a year sometimes after you're "finished". Just remember not to push yourself too hard. You have just completed an ordeal of epic proportions. You are NOT 100%... you're lucky if you're 75% or even 66%. Take it easy on yourself and don't let people demand too much of you now that you're "well".

    - SB

    Bob -

    You are so right. And while I have the biggest positive attitude I can imagine, I am still Stage IV, and I get discouraged when my friends seem to think that I have no greater risk of future problems than they do. OK - she's been cured of that - let's move on. And, nice as that is, we know it doesn't always work that way, so I also find that aspect stressful.

    Meanwhile, the more time that goes on, the better it gets. And, Mum - things will get better.

    Betsy
  • finner
    finner Member Posts: 230 Member
    Hello Mum!

    Yes indeed, congratulations on completing 11 rounds of Oxi. I am stage 4 with lung and liver mets, inoperable (yikes). Dx in 2004, Oct, have been on various chemo regimes since. The oxi was hard, particularly the neuropathy.I found that, while starting on a short break from Chemotherapy, I kind of allowed myself to feel sorry for myself, and to acknowledge that I wasn't superwoman. i can't or couldn't do that while on chemo, because I had/have to be really strong to deal with it, physically and psychologically, if that makes any sense. The best of luck with your last treatment and indded for the rest of your life.


    xxxxx
    Margo