Posted by alexisrj on Apr 21, 2020 7:53 pm
Posted by Wendy Tea on Apr 21, 2020 9:49 pm
I hear you when everyone is weepy and you are forced to be strong. Hopefully once they are over the shock they will step up and provide support for you. It is such a scary time!
The good thing is you have a diagnosis, you are in the system, you will receive the best care, and every year treatments improve. Please try to live for each day. Think about what you know to be true today. What ifs scare the heck out of me. So do what I did and deal with one thing at a time. Please ask lots of questions, laugh, cry, and share with us. We are here.
Posted by alexisrj on Apr 21, 2020 10:45 pm
Posted by Wendy Tea on Apr 21, 2020 10:58 pm
Posted by Rayline on Apr 21, 2020 11:24 pm
Posted by Peterpatch on Apr 22, 2020 1:14 am
I can understand you not wanting to tell people and wanting to tell everyone. Some people don't know what to say or how to act when you tell them. I didn't want pity. I just wanted to collect prayers so I can be courageous and patient with all the waiting waiting waiting. Not only is a Cancer diagnosis a shock but Covid-19 removes the physical support of your family and friends. I miss my hugs. I have my son throw me a hug through the window but it is not the same. I am blessed with a wonderful husband, precious dog and supportive family and friends. This is a great site to visit. Lots of honesty compassion and wonderful suggestions.
Posted by Whitelilies on Apr 22, 2020 1:20 pm
YOU ARE NOT ALONE.....I/we are ALL here to listen, help, support, offer ideas, share experiences.
You are a mom, with 3 little ones.....I truly understand how busy life is, especially now.
WOW you JUST got your diagnosis, and you are reaching out.....this is wonderful....
I wish to share my journey, to give you HOPE !!
I too got the diagnosis of Colo-Rectal Cancer, at my FIRST EVER colonoscopy. I was 56.
Dr was sure it was cancer, even before the biopsy results were completed. Dr. was correct.
I was referred to a Surgical Oncologist, who specializes in Colon/Rectal Cancer.
Surgeon wished another colonoscopy, so HIS eyes could see/not just review another doctor's notes. He then ordered 2 MRIs......one for colon area/one for liver.......they ALSO found "spots" in liver MRI......it turned out to be Haemangiomas.....like a birthmark I was told..... then radiation.......then surgery to remove 3 cm tumour. Then healing....a few bumps along the road BUT HERE I AM.
I too have kids...a tad older.....both have Autism......I too am busy! lol. I did NOT tell them....they would not understand....
Telling others: This is a personal choice.....tell those you simply wish to know. I learned....the hard way.....that "telling" does NOT equate to supports, etc.
So, tell, because you wish to tell. Share, because you wish to share.
I can answer any question, worry, concern, you may have......YOU GOT THIS !!
Posted by KiwiCam on Apr 22, 2020 1:37 pm
This is a great space to talk about everything you're going through. Tons of super-supportive people and really helpful—and calming!—suggestions.
Posted by Whitelilies on Apr 22, 2020 2:39 pm
I LOVE your suggestion of one person, being the GO-TO, for communications.......I will do this too.
Terrific idea.....lessens pressures on patient....(to respond), and offers updates via communication person, and others are kept in-the-know.
Thank you.....super idea.....
Posted by Jeff M on Apr 23, 2020 6:40 am
I’m a colon cancer survivor, it’s been a year since my diagnosis and at the end of May will be one year since my surgery. I was 55 years old when I was diagnosed, married with a16 year old son and 11 year old daughter. It was a lot to take in after my first colonoscopy, especially when the dr takes me aside alone and told me he found a tumour, and it’s cancer.
For me, it ended up being stage 2, but after surgery to have it removed, they told me they got it all.
When I met with my oncologist, he told me that I had a couple nodules on my liver but after an MRI they turned out to be small cysts that were nothing to be worried about. After 2 ct scans ( every 3 months ), I’ve been put in the 6 month plan and don’t go back until end of July.
One thing I learned throughout this, stay away from Dr Google.....it messes with your mind, rely on your surgeon and oncologist for answers . I have an amazing oncologist and surgeon, they always were easy to talk to.
Stay positive, focus on positive stories.....people on this forum are great too....
Posted by ashcon on Apr 23, 2020 1:06 pm
It was a great tip you gave, KiwiCam, about getting someone else to stay on top of the communications and provide updates to all the friends and family. It is a great suggestion! Doing that is definitely a full time job.
A word of caution: I found that this approach of having a spokesperson started backfiring a bit for me when people were not reaching out to me directly as frequently. I know they were just being mindful of my well-being, but it was almost like people saw me as the cancer patient who 'stopped living'.
So please remember to stay in conversation with loved ones, staying connected to what is still 'normal' when you are feeling up to it. And make sure your 'agent' helps facilitate this. as well!
And when we are released from this darned covid19 thing, go out for coffee/tea, lunch dates, movie nights with friends. It truly helps you remember that you are YOU still and not defined by this stupid disease.
Your treatment will end someday and it is easier to continue already-existing connections, versus trying to re-establish connections that fizzled away.
That is my very humble 2 cents ! 😁
Posted by alexisrj on Apr 23, 2020 1:37 pm
Posted by alexisrj on Apr 23, 2020 1:41 pm
Posted by alexisrj on Apr 23, 2020 1:49 pm
So true when you say telling others does not equate to support! When I got my official diagnosis, I told my family they could tell whoever they wanted, it's a long road ahead and I'm generally an over-sharer anyway.... but from all the people who now know of my family and friends, more friends have reached out and only 2 family members (one texted me, one texted my husband). I know it's not that they don't mean well, but probably just don't know what to say. But I'm glad you mentioned that and I am not expecting support but just so appreciative of any support or well-wishes, etc.
My tumour seems to be about the same size as yours - 2.5x3cm I think he said. Thank-you for your story and the encouragement! <3
Posted by alexisrj on Apr 23, 2020 1:57 pm
Posted by alexisrj on Apr 23, 2020 2:10 pm
That's awful you were alone when your surgeon told you - it was hard enough hearing it with my husband there. I'm glad you're doing well! Stories like yours give me so much hope!
Posted by alexisrj on Apr 23, 2020 2:17 pm
Posted by KiwiCam on Apr 23, 2020 2:23 pm
Posted by alexisrj on Apr 23, 2020 3:26 pm
Posted by Lianne_adminCCS on Apr 23, 2020 4:31 pm
I am so happy to see what a great response your post has got. It is not always easy that first time we reach out but it is so helpful to hear other people's experiences and what worked for them.
Wanted to note one method that worked for me during treatment. While there wasn't isolation like we have right now, I still tried to keep the visiting down to a minimum especially during chemo. I started a email update for those who wanted to be on it. I kept everyone up to date on all the cancer coming and goings. At the end of each email I told them to tell me if they wanted to get off the email list. I found more often than not I had people ask me why they WEREN'T on the list ha.
With getting all the cancer details out of the way, and people could read or not and take it in in a way that worked for them. Then when we talked or visited, we could do a 5 minute recap and then talk about anything else BUT cancer.
Continue to reach out here - there is a wealth of information and support for others who have walked a similar path.
Posted by KiwiCam on Apr 24, 2020 12:12 pm
Once you're home, you'll have the process of discovering what diet works for you and doesn't cause you either diarrhea or constipation, and you'll be tired, so things you can do with a low energy level are great. My family and friends sent me puzzles, books, and streaming services to help with recovery so that I had options for low-energy days and better days, and we stocked up on low-fibre foods beforehand so that as soon as I came home I'd be eating the recommended diet. Walking every day and gradually increasing the distance is key, and it helps not only with healing the incisions but also with getting your bowel working at its best. You won't want to walk far in the first couple of weeks because you'll probably want to stick fairly close to the bathroom! I did laps of the condo in the first week when I had urgent diarrhea. Your body will tell you what it can manage. You'll probably get advice from your surgeon and perhaps a hospital nutritionist (and a stoma nurse if they are giving you a temporary stoma) about what foods to avoid in the first weeks or months as your body adjusts. There are good information sources about diet online as long as you stick to proper medical sources and don't go down the Google rabbit hole.
You'll need to have any surgical staples taken out by your GP 7–10 days after surgery—it can't be left longer than a certain time because flesh starts to close around them—so it might be worth making that appointment now, but maybe first get confirmation from your surgeon about if, when, and where that should happen. My surgeon doesn't do staple removal, so it had to be a GP. I'm not sure about your GP's clinic, but under COVID restrictions, my GP's clinic is restricting in-person appointments to essentials and they were heavily booked up, so it was difficult to get an appointment within the narrow time range needed and I ended up having to see someone else. I wish I had known about it before surgery so I could have made the appointment ahead of time.
I'll post more if I think of anything else but hope that this gives you at least some helpful information. I'm wishing you a brief hospital stay and quick return to your comfy bed at home where you can rest and watch as many Netflix shows as you darn well please!
Posted by alexisrj on Apr 24, 2020 1:08 pm
Posted by alexisrj on Apr 24, 2020 1:14 pm
Posted by KiwiCam on Apr 25, 2020 11:25 am
Posted by alexisrj on Apr 25, 2020 11:29 am
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