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Gentle Hello to @Haemish

Gentle Hello to @Haemish

Posted by Whitelilies on Feb 20, 2020 2:41 pm

Haemish‍ Hi Greg
Just a gentle Hello.....thinking of you....and wondering how you are doing?
If you can/catch your breath....drop a few words here.....

Sending Strength,
You Can Do This !

Regards
Whitelilies

Lillian

Re: Gentle Hello to @Haemish

Posted by Haemish on Feb 20, 2020 3:08 pm

Hi there!!  Great to hear from you and so sorry I haven’t written in a while.   Everything is awesome so far.  I am about to hit the halfway point of treatment tomorrow and so far no side effects!  I feel almost guilty saying that.  Lol.  I had some minor issues this past Monday but they have subsided.  I have been getting out to walk everyday and don’t feel tired and my appetite is good although my dietician drastically altered my diet, but it’s all good.  I am actually doing some baking to keep myself busy and to also give away to people who stop by and to also take to the ladies who do my radiation.  Gotta keep them happy.  Lol.  How are things with you?  

Re: Gentle Hello to @Haemish

Posted by Whitelilies on Feb 21, 2020 1:28 pm

Haemish‍ Hi.......I am so happy you posted.....and THRILLED you are doing great! Your good news made my day! Honestly!
I am OK.....thank you.....my myriad of appts start up again in about 2 weeks....
Today is Province Wide Teachers Strike.....(no traffic around here! lol)

Keep strong.....hope you are making choc chip cookies! Everyone's fave !

regards
Lillian
 

Re: Gentle Hello to @Haemish

Posted by Haemish on Mar 11, 2020 8:55 am

AriesWendy TeaWhitelilies‍ hello everyone.  I am so sorry I haven’t reached out in a while but you know how it goes when you get into a self care routine and you become focused.  That being said , today is treatment 26 of 28 so I am almost done phase one of the Journey.   So far I have being doing very well.   Saturday I started experiencing rectal bleeding during bowel movement but I have been managing that with suppositories that I was prescribed and Advil.  I have not experienced any other side effects so far.  The radiation therapists said that things usually start to get better by the end of the second week after radiation is done.  I have an appointment with my surgeon this week so it will be interesting to see what he has to say and when my next round of tests will be to see if the tumour shrunk significantly enough to save my sphincter.  On Saturday , I’m leaving with my daughter and parents to go away skiing for the March Break so I am really looking forward to that.   

Re: Gentle Hello to @Haemish

Posted by Wendy Tea on Mar 11, 2020 10:28 am

Haemish‍  So wonderful to hear from you and that you are doing so well. It is hard to believe you are so far into treatment!  I remember the anxiety we all felt as you waited for it to start! Have fun skiing, stay safe, make memories, and wash your hands! Thanks again for checking in. 
Healing takes time and opportunity. Wendy Tea

Re: Gentle Hello to @Haemish

Posted by Lianne_Moderator on Mar 11, 2020 12:09 pm

Haemish‍ 

Thanks for checking in. So nice to hear from you and that you are doing pretty well through the treatments. One milestone almost ticked off the list! 

Enjoy your time away with your family  🎿 and let us know how your next appointments go.

Take care
Lianne

Re: Gentle Hello to @Haemish

Posted by Whitelilies on Mar 11, 2020 3:56 pm

Haemish‍ 
Hello
I am so happy you are doing great.....26/28......2 down to go! celebrate!
Yes March Break is around the corner.....enjoy quality family time!
As mentioned earlier: wash those hands! A  lot!
Let us know next steps.....
Sending Positive Vibes your way.....

Whitelilies

Lillian

Re: Gentle Hello to @Haemish

Posted by Cynthia Mac on Mar 12, 2020 10:05 am

Hey, Haemish‍ ! Gentle hello? Naw, waving like crazy!

Thanks for the update! I’m glad to hear that you’re almost through this phase - and that you’re feeling well enough to go skiing! At least you’ll be out in the cold and wearing gloves a lot of the time!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Gentle Hello to @Haemish

Posted by Haemish on Mar 13, 2020 12:39 pm

Hello All

i met with my surgeon today to discuss my rectal bleeding and next steps.  I have a sigmoidoscopy scheduled for April 20 and also an MRI before that to see what progress was made with chemo and radiation which I finished yesterday.  He seems bound and determined to do an abdominoperineal resection but we shall see.  Hopefully the tumour shrunk enough to avoid that and my a****** can be saved.  Lol

Re: Gentle Hello to @Haemish

Posted by Cynthia Mac on Mar 14, 2020 8:31 am

Haemish‍ , congratulations on finishing your radiation! 

You could ask your surgeon if he has discussed your resection with the tumour board, and ask if they concur with that action. The responses to those questions might give you a level of comfort about this that you don’t seem to have right now.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Gentle Hello to @Haemish

Posted by Whitelilies on Mar 14, 2020 11:24 am

Haemish‍ Hello
Thanks for this update......You completed SO MUCH ! Yeah.....onwards....we march together.....
MRI and Sigmoidoscopy are NORMAL !  I had same.....with those results, he decides on what type of surgery, see shrinkage etc.
Now, stay healthy! Wash hands.....mini walks outdoors.  Please let us know, how you are doing......keep posting!
Regards
Whitelilies

Lillian

Re: Gentle Hello to @Haemish

Posted by Haemish on May 15, 2020 8:54 am

WhiteliliesCynthia MacBrighty‍ Hi All.  So I am prepping for phase two of this journey which is surgery.  I had my sigmoidoscopy on Tuesday and after I met with the surgeon.  I was holding out hope that the results would be different but I guess deep down I knew what things would be.  I am having abdominal perineal resection.  He will be removing my anus, rectum and providing me with a permanent colostomy bag.   I have been struggling the last couple of days.  I know there are LOTS of people in way worse situations than me but I can’t help but break down and cry sometimes.  I blame myself for being where I am because I didn’t take better care of myself at a younger age.  However, friends of mine pointed out that younger , healthier people still get the disease.  It doesn’t discriminate.  I know I will find a way to push through but it will be hard since I can’t have visitors or anything at this point.   My parents will be my care givers after surgery and I worry about the impact of this on them.  It has been interesting so far with a couple of friends staying in touch and constantly checking in and others who were initially interested have dropped off.  I am sure it has to do with the Covid crisis and all but it’s interesting to see who has stuck around and who will as this moves forward.  Thanks to you for always being there and being positive.  After surgery is four months of FOLFOX chemo treatment.  Yippee.  Lol. 

Re: Gentle Hello to @Haemish

Posted by Cynthia Mac on May 15, 2020 9:42 am

Haemish‍ , Thanks for updating us.

I know the idea of the colostomy bag is daunting, but it will be alright. To get to your latest post, I read through your posts from 2 months ago, and I remembered other posts from before that about how worried you were about radiation. My hunch from all of that is that you’ll manage this next step just as well.

I know several people who have had colostomy or ileostomy bags and have been quite successful. One woman was the mayor of my city for several terms. I have lots of confidence in your ability to get through this.

FTR, I think that some of your friends who have stuck around are pretty wise! As for the one who haven’t, my theory is that those people leave our lives to make room for the people who are going to serve our higher good. I encourage you to “lovingly release them back to the Universe!”
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Gentle Hello to @Haemish

Posted by Brighty on May 15, 2020 9:45 am

Oh Haemish‍  please don't blame yourself.     Yes, this disease  can strike anyone , young or old, healthy  or not.    You have a right to your feelings ..
​​​​​so allow yourself  to feel whatever  you need to feel.     I want to wish you the best with surgery.   As for the friends who don't stick around,  it happens  all the time...   some people  just can't handle it and disappear .     Focus on the ones who are  still  here  and your recovery.       We are here and sending virtual hugs.   One from my cat Vinnie too.    Keep us posted my friend.      
Help is out there. All you have to do is reach out.

Re: Gentle Hello to @Haemish

Posted by Whitelilies on May 15, 2020 11:14 am

Haemish‍ Hello
We ALL  understand.....we are ALL here for you......
I want you to know, NOTHING is your "fault".....cancer gets the best of the lot! young/old/healthy/unhealthy/smokers/non smokers....the list DOES go on.
I know a lady.....yoga teacher.....Vegan for 35 years and BOOM: She got "it" too.
Friends:  yes.....some stay with love and support.....others disappear.....it happened to me too.  So, know, "this" occurs everywhere....do NOT waste energy on friends who go M.I.A.
Focus on YOU, your health.....your inner peace.
I is OK to cry......I kept Tissue Companies in business! I did!
You are not alone.
In a small way......it is GOOD NEWS that the surgery is a GO for May......so many are cancelled.....soon, the healing process will be here.
It is wonderful that your parents are able to support you post-surgery.....it is NOT too much for them.....they want to help their son.....they will dig deep and find inner strength to support you in so many ways....and then YOU will find your inner strength to KEEP ON GOING....re gain your strength.....it will take time....yes.....it will happen!
You have ACHIEVED SO MUCH....be proud of yourself!!!!
Take this journey.....step by step......now....you stay healthy.....(wear your lone-ranger mask)......and be prepped for surgery....take this time FOR YOU....walk a bit....clean a bit...shop a bit...stock up a bit.....just make it work for you.
Please keep posting.....I/we ALL want to help....guide, support, and listen.
I healed from the LAR.....it did take time.....I did swear a little (shhhhhh)....

Then I MADE IT! ..........................  I COULD VACUUM SOLO !!!!!!!!!!!!!!

tiny chuckle

Warmly,
Lillian

Whitelilies

Re: Gentle Hello to @Haemish

Posted by Lianne_Moderator on May 15, 2020 1:42 pm

Haemish‍ 

Thank you for the update. I wish you well with your upcoming surgery. A couple of things that struck me. As others have said, there is no room for blame here. Most of us could likely finds things they wish they had done different but in the end, as you say, cancer doesn't discriminate. And also don't think that because "others have it way worse " that it diminishes your experience at all because it doesn't. Our "stuff" is still our stuff. It is okay to commiserate about it.

I really hope you can feel the collective hug from this community. Continue to reach out as we are listening.

Lianne

Re: Gentle Hello to @Haemish

Posted by Haemish on May 15, 2020 2:42 pm

Lianne_adminCCSBrightyWhiteliliesCynthia MacWendy Tea‍ I truly missed reading all the wise things you have to say.  Deep down I know them to be true but it’s still nice to get reassurance.  I have been filling out my application for the Ontario Assistive Devices Program to help with costs of ostomy supplies. Does anyone have experience with this program?   Also, as I’m sure you read , I am going in FOLFOX after surgery.  I have a phone meeting with my chemo oncologist this Thursday to talk to him about chemo treatment.  Does anyone have experience with this stuff?  Not to sound cocky, but radiation was pretty easy with what I considered minor side effects.  My understanding is that this stuff is stronger. Anyways, I was making jokes with my parents today that I will get to play the forward tees in golf once I am better since now I have a disability.  Lol.  Might as well take advantage. 

Re: Gentle Hello to @Haemish

Posted by Wendy Tea on May 15, 2020 3:08 pm

Haemish‍  You know we are with you for your journey.  Feel free to message me anytime.  One of my family members had this surgery several years ago then went out and bought a sports car!  Yes I believe radiation is often easier than drugs. I will always help you when I have knowledge on a topic. 
Healing takes time and opportunity. Wendy Tea

Re: Gentle Hello to @Haemish

Posted by Lianne_Moderator on May 15, 2020 3:12 pm

Haemish‍ 
So in the long run, this could in fact help your golf game 😉 🏌️‍♂️

You may want to call our Cancer Information Helpline with regards to the Device Program. They are at 1-888-939-3333 and may be able to point you in the right direction.

If you search Folfox you can find other discussions about it.
I did a quick search and found this discussion https://cancerconnection.ca/discussions/viewtopic/64/65278?post_id=319794#p319794
Both Andree1‍  and Princess Sela‍ mention taking it and perhaps can share their experience or answer any questions you may have.

Lianne

Re: Gentle Hello to @Haemish

Posted by Whitelilies on May 15, 2020 5:52 pm

Haemish‍ Hello (again)
ADP (Ontario)...Yes I have experience with this......it is terrific you are NOW filling in the form(s).....before you are discharged from hospital, try to remember to get a Dr/Surgeon to sign off , on this form.....you take form home....mail it....(not a bad idea to make a photocopy first, just in case)....twice a year you will get a cheque (perhaps now they offer direct depost) for the Ostomy Products.  Please keep all receipts, as you go forward. Your basic pharmacy (Rexall, Shoppers Drug Mart etc does NOT carry Ostomy products)....Home Health Care does carry many products.  Once you are on board with your selected store...you probably can Auto-Order....and they will deliver to your home.
Please know.....in the hospital, you will be shown how to change the bag....you will be cared for by the Ostomy Care Nurse.....upon discharge, you will be given (in a discreet bag.......) lots of ostomy products.....may even last you for weeks.....hospital gets samples from companies and gives them direct to patient....
Once you are home.....you WILL receive home care from a nurse, qualified in Ostomy needs....CCAC (Ontario) sends you support, for up to 5 visits, here is where you get the actual "lesson".../hands on practice, .in your home.....privacy....etc......I got 7 lessons because I was not as skilled as nurse wanted me to be! Go Figure !

IDEA:  If possible.....as time is on your side....try to get/buy/order online a man's sweater or hoodie WITH POCKETS.....this will give you comfort.....and you can place your hands in pocket to "feel" if bag is in need of your attention/change.  ALSO:  try to have at home, maybe 3 pairs of elastic pants/shorts for summer.....it offers you comfort....you may be swollen and tender at the beginning....you may feel bloated....this will feel good on belly area.  When tenderness subsides, you can "take in" the shorts (at the waist).

I am here to help.......with any concern you have....I will "stop" now.....and not overwhelm.

When you are at the step of bag/which one/etc.....please let me know...and I will share more ideas/tips etc.  

Sending strength.......

Warmly,
Lillian 
Whitelilies