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Starting our journey.

Starting our journey.

Posted by goldcat86 on Sep 10, 2020 10:49 am

Hello,

My name is Mike. My wife, Laura just got diagnosed with advanced colon cancer. I am 39 and she is 34.

She has been having bowel issue for nearly a year now, and blood in stool since July. After blood work, she got a colonoscopy on Sept 3, and an emergency CT scan immediately after. They found a tumour in her colon, and some metastasis on her liver.

It has been a rough week, so many ups and downs, and very little information. Her family doctor seemed optimistic, but the Dr that performed the colonoscopy was very matter of fact to the point of being discouraging.

Thankfully she is not in any pain, and the only fatigue is from getting up to use the toilet frequently at night. Next step is an MRI this afternoon.

We are at the very start of this journey. We were in a very good place in our life (except for COVID :( ), and have no compounding stress, so we are trying to stay positive as best we can.

Re: Starting our journey.

Posted by Andree1 on Sep 10, 2020 11:15 am

I’m so sorry to hear you are now part of this group.  Yes, at the beginning, the information is sketchy, and of course it’s hard to be on standby for so many plans and activities.  I ha ve colon cancer also. Had sigmoid ressection in 2018, followed by adjuvant chemo ( chemo after surgery to make sure any floating cancer cells are taken care of!).  Now I have metastases in lungs. I had my eight chemo treatment yesterday, and may recent ct scan shows diminishing tumours and less cancerous nodules.  
I don’t know about your wife’s cancer, but my oncologist said that colon cancer is a very slow growing type of cancer, so we have time to take all the help we can get from the excellent care we get in Canada. 
you will certainly know more soon...  I wish you a good journey.  Cancer makes you appreciate every moment with family and friends. One little word of advice:  don’t google too much!  Make sure the info you get is from cancer.ca,  

Re: Starting our journey.

Posted by Cynthia Mac on Sep 11, 2020 9:59 am

Hi, goldcat86‍ , welcome to the site. Your wife is quite young to have contracted this disease, but I’ve noticed that a lot of younger people are contracting colon cancer, based on what I’ve read here.

Andree1‍ gave you good advice about avoiding “Dr. Google.” It’s so good that your stressors are low and that you’re working to stay positive. Try to take things one day at a time, and not think too far ahead. I’m fairly certain that once you have a treatment plan in place, things will move very quickly. The positive mindset you both are trying to maintain will go a long way to helping you get through this.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Starting our journey.

Posted by Lacey_Moderator on Sep 11, 2020 11:30 am

Welcome goldcat86‍ 

Sorry to hear about your wife's diagnosis. Waiting for information and treatment is a tough stage. She is lucky to have your support. 

I want to introduce you to Pinto‍, Haemish‍, JoTry‍  I hope they will share their experiences with you.

You may also find our booklet helpful: Coping When You Have Cancer

Feel free to continue to post updates, ask questions, and reach out for support.

Lacey

 

Re: Starting our journey.

Posted by Haemish on Sep 11, 2020 12:18 pm

goldcat86‍ Hi there.  I too am sorry to hear about your wife’s diagnosis at such an early age.  When I was diagnosed back in December 2019 with stage 3 rectal cancer they said I was young. Lol.  Anyways, I am a survivor.  I had radiation and chemo to start I February and March followed by the removal of my anus, rectum and sigmoid colon in May. I am now doing follow up chemo and will be finished in September 27.  I am beating the beast and there is no reason your wife can’t also.  Everyone has a different experience and I am told it’s good to fight while you are young because you have the physical strength to battle it.   Yes take it one day at a time and ask doctors lots of questions. If you need suggestions on getting organized for your wife I can definitely help. I’m a high school teacher and currently not working so I’m getting itchy to plan things. Lol.  I am happy to share any and all details of my journey so far but like I said and you will hear often everyone is different.  I found that once I was part of the cancer centre family and had a treatment plan laid out before me that I relaxed a lot and went to work.   Please feel free to reach out as much as you need to and your wife included. 

Greg

Re: Starting our journey.

Posted by goldcat86 on Sep 11, 2020 12:27 pm

 MRI went okay yesterday. First oncology consultations are Monday. Glad that we are hitting the ground running, but also worried about the level of urgency.

Our biggest immediate challenge is transportation, as we don't have a car. We will be leaning heavily on my parents, and a few other acquaintances, so I doubt we will be stuck. It will be hard come winter if I cannot wait inside the hospital.
 
We don't have a huge social circle. We both had stressful childhoods, right through collage when we met. We were just settling down and starting to reach out to other people. Laura has a few work acquaintances, but I have no friends besides Laura (that is incredibly hard to type out). We were both feeling pretty isolated over the last 6 months for obvious reasons. Laura has been working from home, and I do not work (homemaker).

Absolutely avoiding "Dr Google". Looking up definitions is too much of a rabbit hole sometimes. Even reading the summaries from the doctors without context on our health portal is difficult sometimes.

We are just trying to keep things as normal as possible day to day right now, and enjoy as many anxiety free moments as we can. That said, you can only play so many video games and do so much Lego, and we have had some very rough nights.

Re: Starting our journey.

Posted by Haemish on Sep 11, 2020 4:12 pm

goldcat86‍ I am sure you are overwhelmed with the urgency of things but it was the same for me. Once you see the oncologist and things get rolling it’s a good thing.  At least you then know the plan and can dig in and focus on that.  

I can imagine it must be tough not having a big social circle but if you reach to people you will be amazed at who will step up.  People who I thought should step up didn’t and others who were friends but not close have gone above and beyond.  Look to see if the hospital or clinic  where you are going has volunteer drivers or see if there are any services like that in your community.   

Re: Starting our journey.

Posted by Whitelilies on Sep 11, 2020 7:48 pm

goldcat86‍ Hello
I agree.....try NOT to google...perhaps ONLY trustworthy sites, hospitals, long standing organizations,etc.
It is OK to "not have a large social circle".  In my humble experience.....
Telling DOES NOT equate to Support.

Best to tell who you wish......some will step up....others scatter far behind the barn ! Run off into the woods !
Look after yourself Mike....and support Laura, with all your might.

Soon treatment is going to be in place.....share, if possible, so we can all offer additional support and ideas to cope along this journey/treatment.

THERE IS HOPE.

Lillian

Haemish‍ You continue to AMAZE ME.....

Re: Starting our journey.

Posted by alexisrj on Sep 11, 2020 10:42 pm

Thanks for the tag Wendy Tea‍ 

goldcat86‍ I'm so sorry you find yourself here, but everyone on here is so wonderful and supportive! I was diagnosed with colon cancer at age 35, my sigmoid colon was removed and my cancer was determined to be stage 1 after my pathology was back after surgery. The tests and waiting is so hard. I'm glad your wife is getting things done quickly. It is definitely hard being at home and isolated but as others have said, we really do find support in the most unexpected places! People I thought were close friends (and even family) basically disappeared, some "couldn't bring themselves to talk to me", and others who I would never expect were bringing my family meals and checking in on me often.

I saw you mentioned doing Lego - do you have kids at home as well? I have 3 kids under age 5 and my living room looks like a Lego explosion most days!

As others have said, really do avoid Googling.... or stick to reputable sites like the Canadian Cancer Society. They also have an information phone line that many have found very helpful. Peer support can be so helpful as well. Unfortunately the CCS cancelled their peer support program but there is peer support available through Wellspring. Helps to talk to someone who understands what she's going through. Glad you connected with Pinto‍ on your profile wall - she has mentioned there are not too many young people with advanced colon cancer on here. She also posted about Colontown on facebook that you and your wife might find helpful as well.

Please reach out to me anytime (not sure if anyone mentioned but to tag someone type the @ sign then start typing their username and select from the list that pops up - it will turn blue and the person will get a notification that you mentioned them).

Alexis

Re: Starting our journey.

Posted by goldcat86 on Sep 12, 2020 6:33 pm

We do not have kids. We are adult fans of Lego, and it is our primary hobby.

Re: Starting our journey.

Posted by goldcat86 on Sep 14, 2020 4:44 pm

Very bad news today. Totally numb, and can't do details. Cancer is "incurable". Palliative radiation therapy and chemotherapy will start in the next 2 weeks. "Indefinite" chemotherapy to buy us a few years.

We are trying to be hopeful. Nobody knows the future. This is not the life dreamed of. We know it will be hard., but we will fight every step of the way.

Re: Starting our journey.

Posted by Brighty on Sep 14, 2020 4:50 pm

goldcat86‍  I'm so sorry ..my heart goes out to you.   Like you said no one knows the future.       They are coming out with new treatments  all the time.     Keep fighting. .. we are here by your side every step of the way.   
Help is out there. All you have to do is reach out.

Re: Starting our journey.

Posted by Andree1 on Sep 14, 2020 5:27 pm

So sorry to hear this!  Make sure you get help!  Make the best of every day!  Who knows... research is still very active... might find some new drugs or treatments that extend survival and quality of life. 

Re: Starting our journey.

Posted by goldcat86 on Sep 15, 2020 2:32 pm

We are doing as well as can be expected right now. Suffering from information overload.

Thank you to everyone who has reached out to me here., but I am going to turn to support offered by our Cancer team going forward.
 
I will keep these forums in mind when things stabilize, and if I have general questions. I just don't think this is the right resource for me right now. I can't handle typing out updates. This journey will be far more difficult then I imagined, and I need professional help to cope.
 
Thanks to everyone again, and good luck on your journeys.

Mike and Laura

Here is a photo of us in 2007, in our first apartment.
903578930434148fa0eef4c2f1a53d1b-huge-la
 

Re: Starting our journey.

Posted by Runner Girl on Sep 15, 2020 4:59 pm

goldcat86‍ ,

I know you and Laura feel like you've been hit by a bus.  Please take all the time you need to digest the new information and move forward with the treatment plan.

I want to point out that your words "buy us a few years" are a very good thing.  You never know what cancer breakthroughs will happen in the next 6 months, year, or few years.  There is always hope that something incredible will be found and be helpful.

I wish you two all the best in this fight.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Starting our journey.

Posted by Cynthia Mac on Sep 17, 2020 8:22 am

goldcat86‍ , I am so sorry to hear the news about your Laura’s path with colorectal cancer. This is a tough time: there are many emotions going on, and you want to “stay real,” but you also want to head straight into denial.

You will find your way through this. Perhaps other members here who have been through similar experiences with palliative care can help you with some of the feelings you’re having, so I’m going to tag WestCoastSailor‍ And CentralAB‍ .

The best advice I have for you is
- if they aren’t already, make sure your affairs are in order (hers AND yours) - if you read back over some of my posts, you’ll see that I’m a proponent of doing this well before a diagnosis. It’s so important to know what you both want as her treatment progresses.
- have as many deep, meaningful conversations as you can. 
- lean on the love you have for each other.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Starting our journey.

Posted by CentralAB on Sep 18, 2020 1:19 am

Thats a great picture of you and your wife goldcat86‍ . Thank you for sharing such personal details of your story, and your challenges.

I am sorry to hear that you have to deal with this diagnoses about your loved one. I am sometimes at a loss for words when I read a story like your's. It reminds me of what I went through when my Dad died of Leukemia a few years ago, and my wife, in April of this year from cancer as well. Everyone's cancer/caregiver journey does have some similarities, but each one is unique as well.

It sounds like you may be describing what is called "anticipatory grief," from current, and expected future developments. I prefer to not call things like this "normal" even though many of us do enter into that realm, everyone reacts to it differently. My heart cries with you over the bad news, and the long, difficult nights, as you described them above. I was the primary caregiver for my wife, and she had a type of cancer that usually only let someone live for a year or so, and we were both "fighters," and were blessed to actually get five more years of being together. I think we are almost twice your age, but we were only together for a year or so when we got her third, final diagnoses. There was mets to the liver, and other areas of her body.

From my own experience as "primary" caregiver, I would recommend that you think for a moment about that word "primary," as it sounds like you are/will be your dear wife's primary caregiver. For me, it was essential to remember I was the "primary" caregiver; but not really the "only" caregiver, as that is just too hard for most people to do. It is really important to start thinking about the following things; especially because of your younger age:

1) Goals Of Care designations - which provide a legal framework to reflect your wife's wishes at each stage of this journey. For example, my wife did have specific things she did and did not want, should she become unable to speak for herself, so the Goals Of Care designation provides, in writing, what your wife's wishes would be if she becomes too ill to communicate that with your or health care personnel. This document then can be available for designated family/friends as a guide in making the decisions that may become necessary

2) Wills, power of attorney, and other legal affairs as they become necessary

3) Who can help you and give you breaks? (respite care, help with practical and/or household chores etc)

I have talked with some people who feared that making the above three items happen, was "being too negative," they feared it wasnt being "hopeful" or "not having faith." and yet, I saw some of them struggle later because they didn't do them.

It was a huge relief for my wife and I that we did do all those things. When she was unable to communicate; we had everything in writing, and it really saved a potentially major drain on my energy and other resources that would be much more essential when the going got really rough.

I can't imagine the shock and disappointment you are both experiencing, it seems far too young for such a thing to happen. I recall my wife's adult children saying "we thought we would have her until her 70s or 80s."

It takes communication to make everything happen that needs to. There will be up days, with hope and great joy, and there will be the cloudy days where you wonder, "wow, how can this be?"

I found with myself, some of my reactions to watching my wife die were complicated, the situation was not complicated, but my reaction was, at times. It was helpful at times to talk with various professionals that were involved, such as doctor, clergy person, or other health care people such as the home care nurse, when I had serious concerns. I found that not everyone would give me the answers I was hoping for; but that telling someone about it, in and of itself, was very therapeutic. I am reminded here of the slogan: "pain shared is pain divided."

It may be that your wife is experiencing anticipatory grief as well. Or that she will in the future. Understanding anticipatory grief is not so straight-forward as we would hope; and yet, when my wife was given her third and final diagnoses, we had the opportunity to use that year or so they thought she had left to "anticipate" or get ready for the death, to deal with unfinished business, to say good byes, and to generally prepare in practical ways, psychologically and emotionally for the death. As some forum members here will attest to, this is all stuff that is a lot harder to do when the death is sudden, or unexpected.

It might also be of interest to mention here that I was a nurse for over 15 years, mostly home care, and still, it was extremely difficult for me a number of times. I have even heard some people say that they grieved so much before their loved one died, that they didn't really need to do it so much afterwards. I think people now days are learning more how to "live with dying," but it is common for people to wonder if it is "giving up hope" when they "anticipate" grief, and loss. I think its a very positive indication of the deep love a given couple have for each other, and that they will be better prepared, because they allowed themselves to grieve, as needed. It was empowering to say the least. There were a couple of times when I called a counsellor to come to the home and see my wife, as I realized that I could not help her as effectively as someone else, for some of her issues that
arose.

In short, we lived each day the very best we could. We both said "I love you," many times each day, and when my wife became unable to communicate; I still said it to her all the time. I never left her side for months in the end. I would recommend to just love each other more, and let each other talk about things. You can both do this. One day at a time.

goldcat86:
Very bad news today. Totally numb, and can't do details. Cancer is "incurable". Palliative radiation therapy and chemotherapy will start in the next 2 weeks. "Indefinite" chemotherapy to buy us a few years.

We are trying to be hopeful. Nobody knows the future. This is not the life dreamed of. We know it will be hard., but we will fight every step of the way.

 
________________ "there is always a little Light"

Re: Starting our journey.

Posted by goldcat86 on Sep 24, 2020 2:16 pm

CentralAB:
Thats a great picture of you and your wife goldcat86‍ . Thank you for sharing such personal details of your story, and your challenges.



Thank you for this message. I read it a few days ago, but only had time to respond now. Things have settled a little. 5 days of radiation next week, and we will find out the chemo plan tomorrow.

"Anticipatory grief" is the exact right phase for how we are both feeling, and there is no easy way to tackle it. We are reaching out to as many resources as we can, but we are still feeling our way around the system.
 
Your post has given me some good starting points as we figure out what we need to focus on, and we have had some constructive discussions about positive goals that were mostly free of grief.
 
It is completely one day a time right now, so I can't say when I will check-in again.

Re: Starting our journey.

Posted by Whitelilies on Sep 25, 2020 1:13 pm

goldcat86‍ Hello
Sending you BOTH strength and positive thoughts......

Warmly

Lillian

Whitelilies