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Hi I’m Alexis, just diagnosed with colon cancer

Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 21, 2020 7:53 pm

I don’t know if this is what I’m supposed to write here but I was just officially diagnosed today with colon cancer. I had a colonoscopy last week so my surgeon had already told me that was likely it as he found a tumour. Still the official pathology report and diagnosis was still very overwhelming for me. I am 35 years old and just had my third baby 9 months ago (I have a 4.5 year old and 2.5 year old also). My CT scan after the colonoscopy was clear but there were a couple of tiny cysts on my liver so I am having an ultrasound tomorrow to confirm that’s what they are (but I’m worried if they’re not just cysts). Surgery is next and then still no idea if I’ll need chemotherapy or what else as they will determine staging after the surgery. I’m so overwhelmed and don’t even know where to start or how to process any of this. I’m hoping to find support, maybe some hope and others who understand what I’m going through. Right now everyone just feels sorry for me and often they start crying before I do so I am finding it hard to talk with family and friends about this, even though they are all so supportive.

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by Wendy Tea on Apr 21, 2020 9:49 pm

alexisrj‍  Well you two are just so darn cute! Welcome. Yes this is a great place to start so everyone can meet you. Then you can check out the Forums tab and Cancer Types. 
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.
I am a survivor. Wendy Tea

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 21, 2020 10:45 pm

Wendy Tea‍ thank-you for your message. I am really trying to focus on the information I have each day and take it one step at a time but it is so hard not to think of all the what ifs. I am so glad I have a diagnosis as I knew something was wrong even when everyone else thought it wasn't anything serious. And I'm scared to be hopeful that it was found early enough and can be treated. I'm also torn between not wanting to tell a lot of people and wanting to just tell everyone. I've been reading through a few of the forums and starting to look at some of the information on the Cancer Society website.

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by Wendy Tea on Apr 21, 2020 10:58 pm

alexisrj‍  Well done! Yes one day at a time. Go slow with telling people.  It can be exhausting telling everyone.  Just take your time. Right now put yourself first because you need to be healthy to look after those sweet kids. We are here.
I am a survivor. Wendy Tea

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by Rayline on Apr 21, 2020 11:24 pm

alexisrj‍, hi Alexis, wow you have a lot on your plate right now with a cancer diagnosis, and three little kids, plus Covid. I am really glad that you have a diagnosis, and as WendyTea said so good your treatment is moving forward quickly. My mind was in a whirl also when I was diagnosed with cancer and the first while is so tough as our minds go to the worst case scenario. Are you able to get help with the kids? I am 62 so my children are grown up and we’re able to help me. Please do not go to google, it will mess with your mind. If you can find some things you love to do, music, reading, dancing with the kids. I did not tell many people about my cancer as I did not want their advice or tears. I did find counselling but I think you first need to get through your surgery. One technique  I learned,  when those negative thoughts overwhelm me I say STOP! Simple but effective Take good care and be very loving and kind to yourself💕
 

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by Peterpatch on Apr 22, 2020 1:14 am

alexisrj‍ 
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. 

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by Whitelilies on Apr 22, 2020 1:20 pm

alexisrj‍ Hello..... Welcome to this supportive, caring site, but sorry for your reason to be here.
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 !!

Warmly,
Whitelilies

Lillian 

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by KiwiCam on Apr 22, 2020 1:37 pm

alexisrj‍ Hi Alexis. It can be very hard receiving the diagnosis and then waiting for staging and surgery, not knowing if you'll need chemo, and also having spots elsewhere that need to be scanned to make sure they're benign. Your experience sounds very similar to mine, and I can really relate to trying to keep the "what ifs" at bay and also not knowing how many people to tell and how to deal with people's responses when you do tell them. I have a suggestion I hope will be helpful. I found it so exhausting dealing with everything from no response at all to endless platitudes (you're a fighter, you'll be fine) to whacky advice about how to cure my cancer to people losing it and me feeling as if I had to manage their distress while managing my own. There's one thing that I found really helpful to ease that, and this is something my partner and I learned from a couple we know when they went through this process. In their case, the partner of the person with cancer handled all of the communication of the initial diagnosis and all of the updates throughout treatment so that the person with cancer didn't have to find the emotional and physical energy to do all that while she was going through surgery and chemo. My partner did that too—she made an email list and sent out update messages and responded to people's enquiries about how I was doing. I read people's messages and responded if I had the energy, but a lot of the time I didn't have the emotional space to email even one person per day. I felt so relieved that my family and friends were getting information even when I didn't have the energy to talk to or email them individually myself. If you have someone in your life—partner, other family member, close friend—who feels up to doing the communication and you feel comfortable with them doing it when it's too much for you, it's a way of making sure people can get the information without you having to find some energy reserve to keep updating them yourself. People are usually very understanding when they are told how tired you are and how traumatic the process can be, and they're grateful for a way of finding out how you are doing without them adding extra stress. 

This is a great space to talk about everything you're going through. Tons of super-supportive people and really helpful—and calming!—suggestions.

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by Whitelilies on Apr 22, 2020 2:39 pm

KiwiCam‍ Hello
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.
Win-Win.

All Winners.

Thank you.....super idea.....

Regards
Whitelilies

Lillian

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by Jeff M on Apr 23, 2020 6:40 am

Hi Alexis,
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....

Stay safe!

Jeff

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by ashcon on Apr 23, 2020 1:06 pm

alexisrj‍  WhiteliliesKiwiCamJeff M‍  I wish you all well in your treatments and healing.  I am a breast cancer person. Sometimes it seems like that most of the conversations that happen on this site are from breast cancer people, so it is nice to see input and tips on topics that apply to everyone, regardless of type of cancer.
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 ! 😁
---- "Nothing ever becomes real till it is experienced." ----

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 23, 2020 1:37 pm

Hello Rayline‍, thank-you for your message! I have not googled anything since my diagnosis - just really trying to go with what my doctors are telling me for my situation, but it's hard to balance being informed and information overload. My mom is staying isolated so that she will be able to help with the kids. So hard though with the corona virus as all of our family is so close to us and would normally be great support in person as well. Take care as well! <3

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 23, 2020 1:41 pm

Peterpatch‍ - you're so right about how difficult it is without being able to even hug family and friends! My mom had to watch the kids when I went for my CT as they told my husband to go with me, so I hugged her as she had been with my kids all afternoon and in our home so I figured, what the heck! I also hugged my sister once as we are so close and it was just overwhelming, but then I've felt guilty about it since, wondering if I've done the wrong thing. :(    I hope things settle a bit and we can have at least a bit of time to be able to be hold our loved ones!

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 23, 2020 1:49 pm

Whitelilies‍ it's amazing how each of our experiences can be different and so similar at the same time! I had my liver ultrasound yesterday and so happy that the spots were confirmed to be cysts and not lesions. I feel like I've been able to breathe again (at least a bit easier) since I got those results. Still so much uncertainty ahead but I'm trying to take it one step at a time.

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

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 23, 2020 1:57 pm

KiwiCam‍ - thank-you for your comments and the suggestion! My husband is going to be the official go-to person overall. But I've left it to my parents to each field anything from each of their families since I'm close with both my parents and I talk with both daily. As things get more difficult, my husband knows it's his job. I've really had to tell him to make sure no one is calling me. I had a very well-intentioned but so unhelpful phone call from my sister-in-law (about 24 minutes of platitudes! "You're not done here...", "I had a dream about losing my sister, but it must have been about you, but I knew everything would be fine in my dream...", etc - it was so hard to reassure her through all of that while being so uncertain myself). After that, he now knows to tell people either not to call or to text first to see if I am up for a phone call. Everyone is so supportive but it really is hard to know what to say and I'm just so exhausted physically and emotionally from all the stress - crazy how much it affects us physically! (not to mention all the random bouts of tears!) 

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 23, 2020 2:10 pm

Jeff M‍ - thank-you for sharing your story! There is so much else to think about when you have kids - I feel like 10 years ago, I would have been worried but not at all in the same way - as much as I'm worried about me, 99% of my worry is about them. I am really avoiding google - I googled a lot before my colonoscopy as I just felt like as much as everyone was reassuring me, my symptoms didn't match the "good things" that can cause blood in the stool...and I tend to go to the worst case scenario as I'm anxious regardless. So I have an idea what I'd find and like you, my doctors are amazing! I don't have an oncologist yet, but my GP and my surgeon have both been wonderful and of course, they are talking about me and my specific case, so I'm trying so hard to trust what they are saying and go with that. The testing is nerve-wracking! I didn't know there could be cysts that are just there and I feel like each test is a new level of worry and fear and things I didn't know I should be worried about. Now I'm just waiting for surgery and then I'll get the staging and next steps. Today I'm feeling ready to take it all on but I know each day, each hour is different right now, just trying not to get ahead of myself.

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!

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 23, 2020 2:17 pm

ashcon‍ thank-you for the suggestion! I'm trying to balance it. I am ok with people texting me directly as I can choose when I respond and how. The phone calls are what I find really difficult. And I have had the "announcement" made by my husband, parents or sister to family and friends. I just feel that I am still wrapping my head around the diagnosis and not ready to tell others myself. And most of the updates are sent out by my husband. I know some others have done a blog or something like that and I can see how that might be something helpful to do, then anyone who wants an update can get it and I am wondering if it would be helpful for me to write it all out. I am generally a bit of an "over-sharer" in life as it is! But still not sure how I feel about everything yet and putting it all out there. I think regardless of type of cancer, I am so inspired by all the stories I've read on here and it seems the experience has so many similarities regardless!

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by KiwiCam on Apr 23, 2020 2:23 pm

ashconalexisrj‍ I absolutely agree about not losing touch with loved ones! I definitely kept in touch with my closest people by Skype, FaceTime and email (and in person before COVID!), but I found that I had to spread it out because some days, I could barely manage one conversation. And yes, normal activities such as coffee dates and movies are so helpful. There were and are days when the last thing I want to do is have yet another conversation about cancer and how my recovery is going, and it has been great to just say to some people that I'd love to get together—online at the moment—and shoot the breeze about normal things, no cancer discussion allowed :-). Mostly people respect my requests to talk about other things, and they get the reassurance they want when they see me and can see I'm okay. Alexis, it sounds as if you have several people in your corner to field the questions and be that buffer when you can't deal with talking to people, which is awesome. Great to have your husband tell people to check in via text to see if you are up to taking a call. I'm glad to hear those liver spots are cysts! 

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 23, 2020 3:26 pm

KiwiCam‍ I'm looking forward to conversations that aren't about cancer. I imagine it's hard in these early days as there is so much changing and everyone wants the cancer updates... At least my kids kind of keep things "normal" as they don't understand what's going on and they just want to do all their normal activities and games - I'm thankful for that but also it's exhausting. I see on your profile you recently had your bowel resection - I just posted on the colorectal cancer forum board if you have any suggestions or tips for preparing or after surgery. Mine is supposed to be in the next couple of weeks and trying to get as much done as I can to be ready while I'm still feeling ok physically. I don't know what to expect and my surgeon gave me all the risks and that stuff but not much practical info.

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by Lianne_adminCCS on Apr 23, 2020 4:31 pm

alexisrj‍ 

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.

Lianne

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by KiwiCam on Apr 24, 2020 12:12 pm

alexisrj‍ There's not much you can do to prepare for the surgery except try to keep your overall health good by keeping active and eating and sleeping well so that your body is in the best shape for dealing with the general anaesthetic. Getting stuff done while you feel up to it is a good idea, especially if it provides some distraction from the stress and makes things feel more normal. I did the spring cleaning before the surgery because I knew I wouldn't feel up to it afterwards! And spending lots of quality time with family too, because for the first few weeks after surgery playtime with kids could be challenging, and young kids especially may not understand why mommy has to stay in bed so much when she gets home from hospital. In hospital they will get you up and walking as soon as possible to help get your body back on track. You'll feel very tired, but short walks are doable and strongly advised. Walking helps to get you urinating—they won't let you go home until you can—and pooping a little as well. My surgeons advised me that after the surgery I would feel as if I'd run a marathon every day, and they weren't wrong! I was very tired, but I'd managed to get up and walking a lot right after the surgery and got to go home very quickly because of that (Friday night discharge after Wednesday surgery). 

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!

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 24, 2020 1:08 pm

Lianne_adminCCS‍ thank-you for the suggestion! It's kind of a double-edged sword I guess with corona virus as I can't have all the in person support I would want but also it prevents others from "hanging around" that I would feel bad to ask to leave. I had surgery about 5 years ago and some of my husband's family sat in my hospital room for hours every day (I was in hospital 5 days....) and so hard to ask people to leave when you just need some quiet time - not going to be an issue this time at least! Would've much rather been updating them by email then as well!

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 24, 2020 1:14 pm

KiwiCam‍ thank-you so much for the suggestions. There are so many things I would never think of and I am avoiding google completely right now! I'll do my best to get up and walking as much as I can in hospital and once home. Especially with the little ones, I want to do my best to help my recovery and not prolong anything if possible - and with the nice weather, they want to be outside all the time. I'll find out if I will have staples to be removed. My GP is usually really good to get into but better to be prepared if I know I'll need the appointment!

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by KiwiCam on Apr 25, 2020 11:25 am

Hi again alexisrj‍. One more thing I could mention. Unless you're being given a stoma (in which case you'll have other things to consider), you may want to get in a little more toilet paper than usual and some baby wipes. You may already have baby wipes because of your littlest one, but you'll need extra for yourself as well! The most common thing right after bowel surgery is diarrhea, and boy does it get tender down there after you've gone 15-20 times a day. A soothing baby wipe is a fine thing indeed! 

Re: Hi I’m Alexis, just diagnosed with colon cancer

Posted by alexisrj on Apr 25, 2020 11:29 am

KiwiCam‍ good idea! We are well-stocked for baby wipes for sure with 2 still in diapers! Even just doing the bowel clean-out before the colonoscopy, I feel like I went through so much toilet paper! I'll make sure we've got some extra.