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Let's discuss life after cancer

Let's discuss life after cancer

Posted by Nicole_admin on Aug 21, 2014 10:20 am

During treatment, you were probably so busy just getting through each day that it was hard to imagine that treatment would ever end. Now that it has, how did you adjust?

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Re: Let's discuss life after cancer

Posted by Windancer on Aug 22, 2014 9:28 am

Nicole_admin wote:
During treatment, you were probably so busy just getting through each day that it was hard to imagine that treatment would ever end. Now that it has, how did you adjust?

I was never really sure if there would be a life after cancer, but there was and I am so thankful for it. My treatment was spread over 8 years, between chemo, surgery and Stem Cell transplants I must admit I was a very busy man.

Personally I think it is very important to get your life to some sort of normallacy whatever that may be or what you are able to do. When I say normallacy I mean something you are comfortable with. It doesn't have to be huge or earth shattering just something you enjoy doing or something that you feel comfortable with.

I have to live with some very small handicaps but in the big scheme of things, it is much more positive than the alternative I was given 5 years ago, when I was told I had a week to live. In 3 weeks I lost almost a 100 pounds and was very sick. Today I have gained all the weight back, look a 100% better. As I have said before I'm now like everyone else I would like to loose 20 pounds. You would never suspect I have come this far back, my doctors are very impressed.

In those 5 years I have done several of the things on my so called "bucket list" but have kept in mind my limitations. I use the word limitations loosely because I know that if I don't push myself just a little I will never get stronger. My mantra is below in my signature.

I used to windsurf a lot (in fact that is how my cancer was first discovered) but my balance was affected by my last Stem Cell Transplant so I kayak a lot more now. In 2010 I was fortunate enough to travel to the Johnstone Straight off the east coast of Vancouver Island and spend 6 days kayaking with the numerous Orcas and other wildlife in the area. In late 2013 I spent 11 days in the Mexican Baja paddling, with all the wildlife, the 120 miles from Loreto to La Paz on the east coast of the Baja.

These are just 2 of the many highlights in my life since my cancer diagnosis.

Terry
"Never Give Up, Go Around, Go Over, Go Through but Never Ever Give Up".

Re: Let's discuss life after cancer

Posted by Nelliennm on Aug 23, 2014 10:48 am

Winddancer you are amazing! 

Immediately post treatment I had a different experience. I crashed emotionally. Just crashed. I got scared and felt hopeless. Treatment was over. I had been brave and positive. Now that treatment was done, I begin dealing with all the feelings I had put on hold. Fear, disappointment, sadness and anger. I had a few reoccurance scares that in the end were nothing to worry about. That took another year...then life got better.

Now I do what I want now rather than putting it off. I let myself love more deeply and take more risks. The colors of life seem brighter and more precious. That for me has been Cancer's hidden gift. 

Re: Let's discuss life after cancer

Posted by Windancer on Aug 23, 2014 11:20 am

Nelliennm wrote:
Winddancer you are amazing! 
Thank you so much, I know my life is not typical of everyone's. We are all unique in what we do and can do, so please never compare your self to me or anyone else for that matter. I'm glad that life for you is somewhat back to normal whatever that is and you are dealing with it. We all have our own ways in which we deal with this.

One of the things I really try to stress in my role as a Peer Support person is to make your self happy no matter how you do it, keep positive, never ever give up hope. That is truly the best advice I can give to someone.

Terry
"Never Give Up, Go Around, Go Over, Go Through but Never Ever Give Up".

Re: Let's discuss life after cancer

Posted by sagitarious vs cancer on Sep 2, 2014 4:54 pm

I had 18hr surgery with heated chemo. 1 month hospital stay. 60% return rate. Every 3 monthz I have to have ct scans. If and when its back I will have chemo to shrink it. Possible lifetime of chemo treatment! ! Cant seem to get closure .

Re: Let's discuss life after cancer

Posted by Windancer on Sep 2, 2014 5:05 pm

sagitarious wrote:
I had 18hr surgery with heated chemo. 1 month hospital stay. 60% return rate. Every 3 monthz I have to have ct scans. If and when its back I will have chemo to shrink it. Possible lifetime of chemo treatment! ! Cant seem to get closure .
First of all, my heartfelt sympathies (for lack of a better word),

Secondly,  I can not imagine all this crap and how you must be feeling and all the uncertainty you are experiencing.

terry
"Never Give Up, Go Around, Go Over, Go Through but Never Ever Give Up".

Re: Let's discuss life after cancer

Posted by sagitarious vs cancer on Sep 4, 2014 1:25 am

Thanks terry. Im trying lots of different approaches. I guess denial isnt the best choice! Anger seems to be my current stage.

Re: Let's discuss life after cancer

Posted by Wanderful on Sep 4, 2014 11:38 pm

Is there life after cancer? I think I'm in denile now, I have had 4 cycles of chemo and I'm told there will be two more, then I get my next CT to gauge progress. I seen to be bumping along this road trying not to let it effect me. I know that if I crack, so do the people around me. So it's "suck it up buttercup" this is your new normal. Deal with it. I actually have no idea how my colon cancer is affecting people I love . Should I ask them? Or just let the elephant stand in the corner? Wanda

Re: Let's discuss life after cancer

Posted by sagitarious vs cancer on Sep 5, 2014 12:22 am

Hey wanda. Im sure their is a life after cancer. I think we havent found that "after"cancer yet. Im finding that it takes a long time to find it. Its a tough journey. Sometimes I wanna run from it. Just ignore it and pretend its not there. I also no that its something that can be ran from. I can only imagine recovery from colon cancer. Depending on what they removed and how much. With my cancer I had tumors on my intestines as well as bladder so i was very nervous about having to get colostamy bags I was prepared for the worst. Although they did remove parts of my intestines as well as sections of my bladder I am still full operational. If the elephant needs to be discussed then discuss it. It could bridge a gap and open up for more intimacy? !

Re: Let's discuss life after cancer

Posted by Tulip on Sep 17, 2014 1:32 am

Life after Cancer....

I learned that the emotional roller coaster and the immense fear and anxiety does go away.  I had to force myself into normalizing my life again.  As a single person who lived alone, not only physically but emotionally, I was even in a new city and province, so I really way in every way alone.  Especially in my own whurl wind harmful that go around like a hamster on a wheel. 

I struggled to find full time employment, struggled financially and struggled with loneliness.  Counselling through my local cancer centre helped and I eventually found partime work and then I finally I found my dream job.  Good pay, good hours, great co-workes, ideal location and job duties that utilize my nursing knowledge, teaching skills, administrative skills and patient interaction. 

Best of all, just shy of three years since my surgery, I am16 months into a relationship...I am in a common-law relationship with a man with four teenage children!!  My life has changed dramatically and actually has normalized more than ever before!! I am living life!!  Not just going through the motions. 

Life after cancer changes, matures and it can normalize.... but the fear is always there.  The intesity of the fear is easier to accept or maybe just ignore.  But its there....like a shadow.  Like a freckle you hate, that grey hair you always see or the new wrinkles around the eyes that form as the years go on.  You glance in the mirror and see yourself....but wonder who is staring back.  Thats how I describe my fear.

Every lump, bump, pain and lab test is scrutinized. 

I have gone for 3 colposcopies for abnormal cells.
I just went for a breast biopsy for microcalcifications (I dont have the results in yet) and have a colonoscopy booked for Sept 24. Yehaww!! ( Yeah I know I am fun at parties!)  

I dont have that luminous fear of the Big C word anymore like I did when I was being monitored for my lichen planus on my tongue that eventually did become cancer,  I knew years before I heard its cancer that I would get it.  Now, I just think its all age related crap.  Seems as I age, I just may have one of those bodies that produces those pesky wait, watch and see type of abnormal cells, be it on my tongue, my cervix or breast tissue and I am certain elsewhere too....

I still think it will be Alzheimers that will get me.  I am so much like my Grandmother and her Mother that way!

So yes that waiting game between tests and results persists and I suppose it always will.

Tracy Tulip65 SCC Tongue 2011 No chemo / no radiation

Re: Let's discuss life after cancer

Posted by sweetdreams on Feb 12, 2015 11:55 am

I was first diagnosed with cancer when I was 6 years old and really the only thing on my little mind was that I was gonna miss school and my friends. A year later, I relasped and needed a bone marrow transplant. My school and friends and family were very supportive. Though it makes me sad that my mom tells me that at that point I didn't want to fight anymore. However I did, and recovered and got to go back to school. I was 13 years cancer free, but this past winter I found out that I had thyroid cancer, which was treated easily compared to my other treatments with surgery. I find now, that I'm 21, I have more fears and anxiety about my cancer coming back and being told that there is no treament and that I'm going to die. Even though I'm working a lot, the fear takes up a lot of my time and I have recurring nightmare. This was even before the thyroid cancer. I belive that there is life after cancer, I just don't know how to deal with the fears and anixety.

Traveling

Posted by Wanderful on Mar 30, 2015 9:45 pm

HI, I was wondering if anyone can point me to a travel insurance company that will insure a pre-existing condition? If I get a chemo holiday I may want to take some time and travel a bit. I know people have done it but my current insurance will not cover pre existing conditions outside of Canada

Wanderful

Re: Let's discuss life after cancer

Posted by Bethney on Mar 31, 2015 8:07 am

I got pre-existing insurance through CAA in Jan when we went on a holiday. I hope this helps.

Re: Let's discuss life after cancer

Posted by FrannyVolunteer on Apr 6, 2015 11:22 am

Bethney, Thank You so much for the info on insurance. I had Malignant Melanoma 15 yrs ago and can't find insurance but now I know were to go to try again. It has always held me back or I paid a fortune to go anywere.  Now I maybe able to travel with insurance at a reasonable price.. thanks again  F
F.J.Seguin

Re: Let's discuss life after cancer

Posted by Bethney on Apr 8, 2015 8:15 am

Franny: you are very welcome. Anytime I can help anyone with anything!! CAA treated us very well & I didn't think that the insurance was expensive at all. We didn't have to use it, but it is great knowing that you have coverage while you are away. It totally gives you "peace of mind".

Re: Let's discuss life after cancer

Posted by aer1983 on Apr 10, 2015 10:06 pm

Ok. I'm sorry for this but there is no where else I can find the possibility of help. I have been cancer free ( thats so hard to say I feel like I can't breathe) for 6 years. My life after cancer is nothing. I think I have PTSD. Everyday I wake up happy and then something might happen. Some trigger that makes me cry and shake and suisidal. If someone says "cancer" on tv, in person, on the radio. I get flashbacks and memories of everything. (I fought for 3.5 yrs) I tried to work but I have these attacks at work and I can't keep a full time job. I'm on disabiity and my family thinks that I do not deserve this service. They belive I shoud be happy to be alive and ok and I should move on. But somehow I can't get through this. I'm angry and heartbroken that my family even my mother will not talk to me about any of this. "they dont want to hear it anymore" I'm down to 1/yr check ups and I can barley make it into the hospital for them. no one will go with me to these appts because they are "done going they have gone enough" i sit in the waiting room for hours crying and they had to move me to a private room last year. I cant find any support in my city and I dont know what to do. Ive made dr apts to see if i can get some kind of medical help but if i cant then i dont know. i cant afford private therapy that i need. im scared that i fought for nothing because i want to die to end this pain. i dont have cancer now but it is still killing me. each month each year it gets worse. Im not sure how long i can stay afloat. im very scared. im sorry for anyone who has cancer that reads this and is scared this could happen to them. i have no where else to go. 

Re: Let's discuss life after cancer

Posted by wasagabeach on Apr 11, 2015 7:05 am

I think most of us survivors will admit that they have had similar feeling, so you are not alone. Do not feel bad because of the way you are feeling, what you have had to endure was very dramatic to you physically and emotionally. I agree with you about certain words or commericals on the TV can trigger an emotional out pore. Just like you I am also on a disabilty and everyday it is a struggle to try and remain positive. I wish I had the  words to alleviate your stress, but I do not and I am sorry for that. Take comfort knowing that in Sept. of this year it will be 10 years of fighting cancer and it has been very difficut. When you are the one going through cancer you feel so alone and that can be overwhelming, but remember you are not alone. I could go on and on but I want to hear more from you, so please lets continue to express how we feel and hopefully we can both help each other
 

Re: Let's discuss life after cancer

Posted by nancy180 on Apr 11, 2015 8:05 am

Dear Aer1983,
I don't know where you iive, but the hospital I go to has good support services.
If your family does not support your emotional needs, it is urgent that you find
a councillor who you feel totally FREE to express yourself too. Also, even one
or 2 friends who understand can help alot. I myself do not even bother
discussing my cancer or treatment with most of the people I know. Not even
my 2 best friends. I guess it's too much for most people to deal with.
Please consider finding a councillor or cancer support group right away.
Many people here are ready to help. Please write back. You can start a
journal or if that's too much, send private messages. Hope to hear from
you very soon
Hugs and more hugs,
Nancy
 

SEEK HELP IMMEDIATELY

Posted by Lara456 on Apr 11, 2015 4:19 pm

I am currently confronting cancer and also have been diagnosed with chronic complex PTSD (well before the cancer).  I have worked for years in social services, and what you describe is not the norm.  You need to make an appointment with your family doctor as soon as possible, and you should take in what you have written to break the ice.  You could be suffering from depression, or an anxiety disorder, in these conditions, we cannot control our emotions and sometimes even our actions and please know--THIS IS NOT YOUR FAULT.  If the ideas of suicide continue--go to an emergency department and tell them you are thinking about suicide--even if you don't concretely plan to take action. It's called "suicidal ideation" and an indication you need treatment as soon as possible.  Thank you so much for writing what you did--I think you are a brave soul to share what you did and I admire you.  Don't worry about paying for treatment, just get help and let things work out. Disability does not mean you can't work,it means your disability presents a barrier to finding a job and retaining employment. There are programs to help you ease into work later, if you feel better. Disability is not reserved for physical disability but also includes pshychiatric disorders-or combinations of disorders (physical and mentall health). if you were approved for disability, you can be sure you met the criteria. With help, you will be stronger and the things people say won't affect you as much. PLEASE SEEK PROFESSIONAL, MEDICAL HELP ASAP. Let us know how it goes if you like and rmemeber-we're here for you!

Re: Let's discuss life after cancer

Posted by journeys on Apr 11, 2015 5:17 pm

I am so sorry you are going through this. I agree with everything the last person wrote. Having suicidal thoughts post cancer is not the norm. You could be depressed. Please see your doctor right away. Medication for depression and anxiety may help. Support services like a social worker or a cancer support group might also help you. See your oncology department for references. I'm sorry your family doesn't understand. Seek help with professionals. Friends and family often let us down when it comes to the cancer experience. Please hang in there. There are people out there who care. 

Re: Let's discuss life after cancer

Posted by Nicole_admin on Apr 13, 2015 9:19 am

Hi aer1983, I too echo the thoughts shared by wasaga beach, nancy180, Lara456, and journeys. You've found a place where you're not alone, there are many survivors on our community who can relate to some of the emotions you are feeling. As nancy180 wrote, there are programs available (some through hospitals and others through different organizations) where you can receive professional counselling too.

You might like to connect with the Cancer Information Service, through this program you can speak with an information specialist who can provide you with these resources in your community. 

You mention that you made an appointment with your doctor, is that date coming up soon?

Thinking of you,
Nicole

Re: Let's discuss life after cancer

Posted by Nicole_admin on Jun 2, 2015 2:24 pm

We haven't heard from many community members lately about this topic, and I'd like to hear more about how everyone is doing. During treatment you were probably so busy just getting through each day that it was hard to imagine that treatment would ever end. Now that it has, how did you adjust?


 

Re: Let's discuss life after cancer

Posted by Addie on Jun 3, 2015 12:12 pm

I finished my treatments in mid April, and since then have been feeling somewhat overwhelmed. Wonder as to what will happen now. Knowledge that they fully expect my cancer to redevelop. Hope that they are wrong or that at least this will not happen for awhile. I am still unable to get really energetic, I burn out easily, and am very tired a lot of the time. I am trying to conduct my life normally and get back in the swing of things, but fatigue and fear consume me at times making it difficult to accomplish much. I am frantic to cross my T's and dot my I's when it comes to responsibilities such as finances, assets, and final arrangements, so that things are dealt with should need be, and then if not at least I am organized and can relax and try to enjoy my life as much as possible. I go back for my first follow up since treatment on Monday, and am terrified. I so want to hear that we are still stablized.

Re: Let's discuss life after cancer

Posted by Joyceladouceur on Jul 25, 2015 5:23 pm

My life after stage 4 pancreatic cancer will never be the same again...ITS BETTER!  I have a beautiful flower garden which I really am enjoying ...I can now eat all the wonderful foods I enjoy....I enjoy my grandchildren and I love to go shopping! I know that God was in control of this whole situation from beginning to end. He supplied the best medical team going  but the best thing  that came of this experience was a closer relationship with God through Jesus. I know without a shadow of a doubt that it's only by the grace of God that I am here today! Remember that our God can do what man cannot.   Joyce

Re: Let's discuss life after cancer

Posted by MarnyO on Sep 27, 2015 9:35 am

I have patiently been waiting for beyond cancer direction.  My last radiation treatement (Jan 5)  I proceeded to the planning forward meeting and the person was sick and no backfill.  I got a brochure that was old and NOT helpful.  My next Oncology meeting on Jan 29 was also not helpful - rather a debate on who books my mammo.  I was thankful for a great GP who took up the slack with care and work certificate extension so I could heal.  I was to be referred to the Wellness Beyond Cancer Program but ..this only happened August and my start to view info is Oct 29 and my Plan forward is Mid November.  This is a long time to bridge for direction but I understand there are funding issues for the program. There is nothing until then and my survey completed end of July will not reflect today and issues in recovery.   It is very frustrating that you have the care and treatment and then it is out the door and on your own.  I am still seeking a service I can provide for assessment on what I can do and cannot do for work having just returned full time (struggling but managing).  The return to work program is also cancelled at Hospital due to fundings.  Has anyone been through this program ?  Not sure if it is worth going now given my GP has been managing my care during and post for the most part.  I have paid out of pocket for help programs such as physio, aqua fit, and pain remedies (on waiting list and maybe get into program next year) given full classes or closures due to funding ....however, I am glad I am recovering and cancer free - the journey was bumpy to date but hoping for a smoother path forward.