Posted by Haemish on Dec 24, 2020 11:00 pm
Posted by Brighty on Dec 24, 2020 11:36 pm
Posted by Wendy Tea on Dec 25, 2020 12:13 am
Can I tell you how I felt? I had a mastectomy so every day I see a large but beautiful scar that saved my life. I too am cancer free. But what I found was that after all that flurry of medical attention, I felt abandoned. I was no longer the center of attention. I had to learn to love myself again. With the start of Covid lockdown in March, I was extremely fortunate to have a friend drag me out walking. When the weather is good I can do over 20 km per week. Now there is a new problem. As the weather deteriorates, my body aches if I don't walk! Well heck, have I created a monster?
Yes our bodies look different. I have a prosthesis to keep my spine aligned. But it is not very comfortable and so I don't wear it during all my waking hours. I spent a lot of time trying to disguise my new body shape. Are you getting more comfortable finding the right position for your bag? My brother has one that he seems to wear high up. His shirts are loose to hid it.
Remember we truly are warriors. We have gone to battle and come home safe but not sound. Please keep sharing your story. I found helping others really was what helped me get through this challenge.
Always wishing you the best. For me it was 12 months after surgery before I started to find myself. Be kind to yourself. We are here to support you. Message me anytime.
Posted by Haemish on Dec 25, 2020 7:18 am
My biggest issue besides loneliness is body image. I hate how I feel and look. I go for massages and Physio to work on getting my body back on track but it just feels like I am killing time. You would think that with all this time off I would get into the best shape of my life and do nothing but workout. I got very discouraged early on when I started walking, expecting the weight to drop off and nothing happened. I know that I need to do more but mentally can’t bring myself to do more.
@Brighty I did talk to a social worker at the start of treatment when I asked about home care. I think I need to reach out to them and see what they can do for me. Yes I have experienced survivor guilt and not felt worthy of the title Cancer Survivor. I felt I handled the physical issues well like treatment and surgery but mentally and emotionally The Beast has taken a huge bite out of me. When I was teaching, I felt like I had a sense of purpose. Since not having taught for almost a year now, I am searching for my sense of purpose. I feel like I can’t go back to work as a phys Ed teacher because I’m a poor model of health. I contributed to getting my cancer and I am not the model of health the kids need. I’m hoping I can stay off work till next September not only to avoid the whole covid situation but to get my head right so I can be effective at work and not just go through the motions till I retire in four years. I visited with people from my school a couple of weeks ago and one person couldn’t understand why I wouldn’t be back at work yet. Yes people just see the physical and don’t get that just because you are done treatment and “look fine” that you are fine.
I truly appreciate all of you and thank everyone for this forum to post, vent and hopefully find clarity through all of this.
Posted by Brighty on Dec 25, 2020 10:07 am
Posted by Lianne_Moderator on Dec 25, 2020 12:01 pm
Thank you so much for sharing what so many feel but don't always feel like they can say it out loud. I posted something about this recently and I will share an exerpt from it here:
Your post resonated with me because when I finished treatment 9 1/2 years ago, I felt the same way. I questioned why I wasn't excited, why there was no celebraton or parade even lol
Truth is for me, the 10 months I spent in treatment was exhasting, replaced my full time job with appointments and treatments etc. Then I felt cast out into the world with no idea of what to expect next and lots of fears of recurrence. My physical treatment was done but my emotional and mental state needed a lot of work still. I was directed to a couple of books that I found helpful. One was called "Dancing in Limbo" - Making sense of Life after Cancer by Halvorsen-Boyd and Hunter along with "Picking Up the Pieces: Moving Forward after Surviving Cancer" by Sherri Magee, Kathy Scalzo . Likely not everything in them will resonate with you but for me, it gave me validation that what I was feeling was very normal and some of the quotes felt like someone was listening to my thoughts. As you can see by your replies here, people are talking about this post treatment stage more often, but less so when I completed treatment.
The thread that talks about similar feelings to you is here: https://cancerconnection.ca/discussions/viewtopic/79/66824?post_id=336374#p336374
I will say too, though I didn't have the challenges and all that goes along with a bag, I too was not feeling like myself aftertreatment. I had gained 35 punds during treatment, I was bald, couldn't look at myself in the mirror. And while it certainly did not happen overnight, ( in fact it probably was 2-3 years for me ) I started to slowly come out of my cave of sadness, depression, etc ( I had a bad break up 18 months after treatment ended so there was a lot going on ). I started walking more, eventually joined a gym , and started eating a little better. Nothing happened at once but eventually little pieces started to fall into place. I wish this for you too.
Continue to reach out, We are listening
Posted by Whitelilies on Dec 25, 2020 1:32 pm
You are NOT alone in your thoughts of.....well all you shared...body image, self worth, depression etc.....
I have it too!
Cancer changes us, from the inside out.
Even if people "know" what you "had", they do NOT get it.....they think you ought to do the Happy-Dance or something....they think you can eat like never before.
I forced myself to attend a 90th birthday celebration of a great aunt....kind of had to attend....did not feel up to it....but I went.
Oh, there was lots of food...I wanted to heave, at the sight. I sat at the end of the long table of guests....and had avocado slices......you bet someone hollered "She eats like a bird". Well, I wanted to fly-on-out and perch elsewhere.People dont get it.
Bag - I truly understand......in time, you will "make nice".."make friends" with it......my first tip, I recall, sharing with you.....buy a lovely manly sweater, cardigan.....it will cover you....keep you warm, and you can place you hands in pocket to check on bag, fullness etc. (For summer, buy a light, thin cardigan....NOT grandpa style....you are too young..lol)
Body Image - Again, things have changed, and so will your self image, of body.....try to walk a bit more.....buy weights 1 or 2 lbs for use at home....do stretches.....watch a gentle work out video.....the only exercise that is good for you, is one that you WILL do......do what brings you joy......
Depressed - well heck this time of year, everyone has a bit .....living solo is hard....no one close to talk to....pick up the phone OR post to us!
Covid - it sucks. period. we are all locked down, locked in. locked up.
Guilt to be cancer free?? This is "normal " too. It is a feeling...you feel it....many do.....when all treatments are done, we are left SOLO....truly solo.....I feel abandoned a lot!
My "care" now comes from the Vitamin C/IV Naturopath Clinic.....I feel cared for.....someone asks me "How are you today?".....When that too closed, due to covid...i felt abandoned, once again......and it closed round #2.....
I thank you for posting....I thank you for sharing....we DO understand. At my hospital, there was a Psychiatrist, Oncology only, who supported patients. I thought "Whoah, I do NOT need a shrink !!"....it took me months to reach out to her......and I was thrilled I did....she was SO helpful...a breath of fresh air....I still have appts (virtual now) as I still need her support.....feelings dont disappear...they are here, some linger, some hide, some need attention.
Please see if your hospital has a social worker OR patient navigator, or Shrink, (lol) for support.
Greg: You Amaze Me.....I KNOW what the APR is......I get it....you have been through a lot (of crap - pun intended !).....you are here.....we are glad.
off to the Loo
Posted by Pinto on Dec 25, 2020 5:13 pm
I’m currently NED from stage 4 so I can totally relate. When people hear the cancer is gone, they think you’re cured and you can be on your merry way. I have one friend who keeps jokingly saying how normal I look and maybe I didn’t really have cancer in the first place. I didn’t lose my hair on CAPOX but that didn’t make it any less brutal!
I didn’t end up with a bag so I haven’t had that experience but I can relate to looking away when I pass a mirror. Even when I brush my teeth I just look down into the drain. Cancer has a way of either making you feel like a superhero or making you feel like a defective loser. Truth be told, I’ve never felt like I kicked cancer’s a** or slayed the beast, as some like to say. I had low self esteem to begin with so CRC has just amplified that.
I’d like to think that when you go back to work, the kids will see you as a cancer slayer. A badda** who beat the odds. It’s cool that you have an opportunity to have an impact on kids’ lives. People are getting colon cancer younger these days (I was 42 at dx) so sharing your story could save their life one day or maybe even one of their parents. That’s one way to deal with the stigma of colon cancer - head on. Talk openly. Share. Be honest about how you feel and what you’re doing to become a better person. In an appropriate way, of course!
And as @whitelilies mentioned, you did NOT contribute to your cancer so just give that one the big old hand ✋. I may have mentioned this before but in addition to being young, I was also slim, fit (mountain biker), mostly vegetarian, non smoker, etc. I don’t even have genetic (inherited) mutations so there’s no good reason why I should have stage 4 CRC at 42. Just bad luck as my oncologist said.
It’s definitely worthwhile talking to a therapist. In BC teachers’ benefits include 6 free counseling sessions per year which are done on the phone. Maybe your benefits include something like that?
Posted by SpeedyStill on Dec 25, 2020 6:05 pm
It sounds like you have a real interesting job. A teacher which you have done I assume for a few years.
What an important job and not an easy one in our Socioeconomic changing times.
You have been given a lot of great information from other Community members.
I also live alone and feel the pressures of my aloneness.
If you need someone to chat with on this thread I will be around for the next couple of hours.
If I don't respond there will be other members who will.
I am not 100% dependable these days but I try.
Always believe in yourself even if you are not getting the fuel you need from other people.
Posted by jRiffRaff on Dec 25, 2020 7:18 pm
My friend in Las Vegas had a perforated bowel, followed by a colectomy and an ileostomy. He struggled, and still does with his bag. I tried to help him by finding out more information about the bag and came across the term "ostomates". I don't know if you've heard of that yet but it is a friendly term for people with a bag. There are plenty of associations (which may be all related). Here in Canada you can check out https://www.fowc.ca/. I've even seen people showing how they wear it proudly in fundraising calendars.
It's worth checking out and connecting with the ostomate community via forums or otherwise. It may help your perspective on the bag and living a full life with your extra accessory.
Hope that is of some help,
(Stage 3 colon cancer Dx Jul 2020)
Posted by Haemish on Dec 26, 2020 1:03 pm
I’m going to look into the social worker at the cancer centre and see if they will even see me now that I am cancer free. Maybe they only take active cancer patients. I know I have free counselling I can access through my teachers union but I don’t really want to talk to someone who doesn’t specialize in cancer patients. I feel like they won’t be able to understand as well.
When push comes to shove, I just have to bare down and get to work in making things better physically. I have to start doing more to work out and walk and get more physically active. Perhaps I’ll see if I can find people who will help motivate me. I do have friends I can call who will walk with me but I always hate asking people for stuff like that and then feeling pressured to help.
I hope everyone had a great Christmas and I was fortunate to spend Christmas Day with my daughter and my parents and have virtual time with my brother’s family.
Posted by Whitelilies on Dec 26, 2020 1:32 pm
Another place to reach out to,,......
Connect with Filomena....she is a wealth of knowledge, kindness and connections too, and support.....I reached her many-a-time......she was solid as a rock.
Ostomates, Canada, another great idea!
I believe a social worker/therapist, etc from hospital **will** take you on as their patient, whether you are active patient, or not.....you are with the hospital....I still talk with Psychiatrist/Onco and I have been arms length from Hospital for a while.......simply say "you wish an appt...the need is there".
We are here, with you.....
Posted by SpeedyStill on Dec 26, 2020 1:38 pm
I had to bail early last night but I am glad you are looking for help.
Associating with people in a similar situation is the best way to approach it.
People who haven't gone through it have a lot of trouble relating.
This is why I have found Cancerconnection to be a great support for me.
Finding some happiness is hard but important to our well being.
I wish you all the best
Posted by Haemish on Dec 26, 2020 2:07 pm
Questions I have to ask and am curious about. What is your epiphany after all this or during your journey ? Do you feel the need to give back or volunteer? Are you a vocal survivor who lets everyone know you had cancer and are a survivor or do you just quietly go about your business and look at as a blip on your life’s journey?
Posted by Pinto on Dec 26, 2020 3:26 pm
Posted by Whitelilies on Dec 26, 2020 9:32 pm
Unless you have been there/done that, or, held the hand of a loved one.....they do not understand the depth, of our feelings. Of course, we/patients have changed...we had to!
From the inside, on out. Our bodies have changed, our worries and focus have changed, and our thoughts are at times, in limbo. "Looking normal" is a passing, fleeting moment...feeling like sh*t, is daily....lol
Epiphany......well........I am the second type you listed.....the one who is more quiet, and not telling the world of my journey.......I told few.....I try to give back to others, and continue to focus on helping families with Autistic children, get the school supports they need.
Perhaps.....you may wish to start something "new" in Sept at your school? An after school program, for the students, to "Make A Difference"...let them choose what they want to change etc....and you can be their support, and guide them. (It is OK to share with students, if you wish, of your journey....they will be in AWE of you !!...be honest....they may have questions.....they may even share some personal stories they went through/their families etc....you never really know).
You mentioned earlier.....shorts and sweat pants......My Idea: (I should become a Stylist.....lol!!!...order online a NEW pair or 2, of modern, funky, cool, sweat/comfy pants.....new colours are out there, soft brown, faded blue etc)...tapered at the ankle....drawstring on inside.....you can look AND feel terrific.....when we feel that we look "good", then our spirits go UP! Try a new cologne......the scent may be uplifting for you (or another person).....Buy a new Hoodie.....in your fave colour.....and make it your "Work out Hoodie"....your go-to....
I believe small, simple things can make us feel so much better....stronger to tackle the big-ticket woes.
Make an achieveable To-Do List.......and you will feel great, when you check one off the list! ie walk 20 min daily.....or drink green tea daily.....or call 1 old friend a week and re-connect.
Make this new year yours! You deserve it.
Greg.....you continue, to amaze me.
Posted by Haemish on Dec 26, 2020 10:23 pm
I have my go to hooded sweatshirt that I wear most of the time when I’m out as it covers my bag completely and is bulky enough so I don’t feel like a pregnant woman walking around. Lol. I did some abdominal work today so that was at least good. I have been having some pain and firmness around my stoma the last couple of days. I know I don’t have a hernia so perhaps it’s food being agree at me.
I was thinking about when I go back to work how I will handle things. Part of me wants to tell the kids right off the bat and address things and part just wants me to carry on like nothing happened and only answer questions if they come up. I have been teaching a leadership class the last several years and thought about doing a big fund raiser for the cancer centre as well as doing colon cancer awareness. Just to help the people that helped me and make more people aware. I am worried people will think I’m trying to make things about me and I definitely don’t want that. Anyways, that’s a way down the road. I have to get back into the right frame of mind to even feel purposeful again. @whitelillies I don’t know why you keep saying that I amaze you. There are for more amazing people out here that I read about everyday, yourself included. People who have the ability to inspire and help heal just the way you are all helping me. I’m grateful to you all and this community. You are right. No one understands unless you have had it.
Posted by Haemish on Dec 27, 2020 3:33 pm
Posted by Whitelilies on Dec 27, 2020 4:41 pm
Wishing you a great evening......
p.s. you amaze me, because of your resilience.....
Posted by Cynthia Mac on Dec 28, 2020 8:51 am
You get that this “time off” wasn’t for you to get into better physical shape in the way your “phys ed teacher brain” thinks about how that looks, right? It was to get you into better physical shape from a doctor’s perspective (i.e., to remove a cancer from your body). It also appears as though you’re looking at your “model of health” through this lens/ mindset. Were you in terribly bad shape when you got your diagnosis? If so, did you question your “model of health” at that point? And, if you were the “model of health” when you were diagnosed, are you so far away from that that getting back there is unattainable?
Your body did what it needed to do when you were going through treatment to help you survive. So. many. people. have a premonition of what their bodies will experience during treatment (along with all the other scary thoughts), and it usually doesn’t involve gaining or even maintaining weight. My Dad gained weight during treatment, too, and to me, that was a sign that his body was prepared to overtake the disease.
You’ve been questioning your sense of purpose vis a vis being in the classroom, but you also mentioned retiring in four years in your post. I know four years was a long way out, but had you considered what your sense of purpose will be in four years, after you retire? Would it help you to think that between now and the time you go back to work (whether that’s soon or not until September) you’ve got a “trial period” for retirement?
In another post you said this:
I have been teaching a leadership class the last several years and thought about doing a big fund raiser for the cancer centre as well as doing colon cancer awareness. Just to help the people that helped me and make more people aware.
And, in writing that I think you may have perhaps answered your own question about purpose. We’re seeing more and more younger adults contract colon cancer (in their late 30s and early 40s), and you’ve got a forum to help at least 200 young people a year hear that message. I hear you when you say you “don’t want it just to be about you,” but you are a “real life” example, and that usually helps drive a message home with a little more “oomph.”
And try not to let that person who said, “You look fine, why do you need to be off until September?” fill you with self-doubt. That person means well: they’re trying to bolster you, not make you question what your body needs to be ready to go back to work.
For that matter, don’t let my words sway you, either. All I’m trying to do here is get you to look at your own thoughts from another angle in the hope that you will feel less off-track. (That was a phys-ed joke)
Do keep coming here and reaching out. I believe that your background as a phys ed teacher has given you most or all of the tools to deal with your current emotional and physical concerns. Allow yourself the time you need to let the pieces come back into place.
Posted by Haemish on Dec 28, 2020 11:46 am
This time off has been a good trial run for what retire might look like and made me realize I need to be involved in things. I plan to get back into golfing again, as well as skiing and travelling and need to get my head wrapped around living with my colostomy to make that happen.
@whitelillies I had a good talk with Frank from CCRAN this morning and he is going to set me up with a dietician who can hopefully help me get things sorted out. He is also going to get me someone virtually to talk with as well as set me up with a support group of people I can engage with. I feel so much better after actually talking to someone face to face over the computer. Hopefully this will get me on track. I super appreciate the info you gave me so I could contact them. I also emailed my social worker at the cancer centre to see what he could arrange for me but he is away till Jan 4th. We will see what he can do and hopefully arrange local stuff for me to be involved in.
Posted by Whitelilies on Dec 28, 2020 4:32 pm
I waited TOO long before reaching out to a dietician.....silly me.....
I am sure the support group will be terrific.
They have (CCRAN) one group, on one Sunday a month, with different topics.....they may branch out, and have different groups/different dates as well.
I have joined a few already. It helps you feel less alone. Period.
Time to make you laugh......I went for a walk in my neighborhood.......and......YUP......got "that feeling".......of "I wont make it home in time for......"......true to my feelings.....yup; "It happened".....now you can laugh......I was not really laughing at that moment.....my lunch was a piece of toast and an apple....and 2.5 hours later: 401 Exit Ramp!
Posted by Haemish on Dec 28, 2020 6:53 pm
Yes I feel better after talking to Frank and told him that down the road once I get my head on straight I’d like to be a cancer coach if possible.
I’m interested to see who I can connect with and how they can help. If anything, it’s someone new to meet who knows what I am going through.
That was a terrifying story not funny. I forget. Are you on a bag or did you have reversal? After going through APR surgery I can’t imagine going through reversal surgery. That would suck. When I’m out for walks and feel any gurgling I immediate check my bag to make sure I’m not having an overfill and need to get home. Lol
One thing I realized today is that I was very prepared for treatment and had a “playbook” that I followed which got me through. There is no playbook for survivorship. At least not one anyone has told me about. I think it should be mandatory that everyone see a social worker or take part in a group once cancer free. For me at least, going through the emotional, psychology and spiritual hardship has been even way worse than the physical hardship I experienced during treatment. I know Covid has a lot to do with this but if you or anyone can direct me to survivorship strategies it would be helpful. It seems like when you are done treatment they wipe their hands of you (pun intended. Lol) and say see you in six months for follow up.
Posted by Whitelilies on Dec 28, 2020 9:42 pm
Why not be a cancer coach?
By the way.....I had Reversal Feb 2019....so it is "off"....and still "action in voiding occurs...." sigh.
Embrace 2 words "Cancer Free".
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