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Hi… here for hope, positivity, and tips

Val99's picture
Val99
Posts: 6
Joined: Jul 2019

2 weeks ago, at 43 years old, my husband went in for a colonoscopy because he was bleeding, and feeling discomfort. Numerous scans and a lung biopsy later, he's been diagnosed with stage 4 colon cancer which has spread to his lungs. 

Now I'm on an emotional rollercoaster jumping between ugly crying, fighty optimism, anger from him not going in sooner, and buying everything on Amazon that I think might help make things more comfortable for him during his fight. The nurse who was there for his lung biopsy told us she remembered him from his colonoscopy because the staff was so sad for us. I'm terrified. Terrified of him having to go through any pain, terrified of the insane medical bills, and most importantly, terrified of losing him. I don't want to think about wills and medical directives - but we have to. I don't want to have to teach his company how to recruit so that he won't be so worried that his clients don't have anyone to help them out and he can rest easier - but I have to. And I ESPECIALLY don't want to learn to cook Hungarian Roasted Root Vegetable Pot Pies and pretend to like them. 

He brings me to appointments instead of his parents because he knows I won't cry and be all depressing while there, and I want to go so I can write down as much as I can because of his selective hearing. But all of that makes me want to cry more.

I need your stories of kicking cancer's butt, of how to make things better, how to maintain hope, things I should have on hand that will help. Really, I'm just looking for anything right now that doesn't involve someone tearing up and telling me how I should start working on his bucket list immediately.

He gets his port and starts chemo next week - they've got Oxaliplatin, Leucovorin, and Fluorouracil lined up to start him out with and will be going ever 2 weeks until he's through 12 visits.

 

-v

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

   I'm sorry That you and your husband find yourselves in this position. I've been there. I had a very aggressive colon cancer into six nodes when I was 48. My surgeon told me straight out it would get me . Three years he said.  If there is something you want to do , do it now.  I went through 48 weeks of chemo after surgery. I did everything they suggested I do. I did give up alcohol but apart from that I lived life as normal. I worked all week and went fishing whenever I got the chance. This january I reached twenty one years , still cancer free. I had my latest colonoscopy two weeks ago. No cancer , no polyps and no diverticulitis. All clear. All the best with treatment and plan to survive, Hugs ron.

Val99's picture
Val99
Posts: 6
Joined: Jul 2019

That's amazing! I'm just so tired of the negativity. I mean, I understand that they need to be up front with you so you don't read too much into things, but the, "sorry for your loss" attitude when he's just been diagnosed kills me. I want to stay positive and be as supportive as I can, but some of these doctors are complete Debbie Downers.

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

I know how shocked you both must be at the diagnosis, unfortunately this disease seems to be popping up in younger and younger folks.

First of all, not hubby's fault that it is at stage 4 and should have been checked sooner.  Many folks have little to no symptoms and end up with the same diagnosis.  Some colon cancers spread faster than others.

Now, as to daily living.  Find a time and place where you can be alone to cry, shout, express your feelings.  If you don't you may find yourself unable to help hubby as you want to do.  Caregivers have a real rough road and need to take care of themselves too.

Next, stay away from the internet searches on statistics.  They are meaningless.  Not only are they done from patients years ago, but they also can't predict the outcome for a single person.  Each person reacts differently to treatments and the disease itself...one of the reasons it is so hard to prevent.

Great that you are going with hubby to appointments.  You might also want to keep written record of any issues, questions that you want to bring up in the appointments.

Ask the oncologist if there is a way to contact him or his staff after hours...just in case something comes up...fever, excess nausea, redness around port...whatever.

The side effects of chemo are cumulative, so watch for changes as the weeks go by.  There are many meds to help with the side effects.  There is also the possibility of changing the dosage if needed, or in dropping one of the chemo drugs.

My sister's onc said she could have whatever she wanted to eat...in order to keep up weight...the Oxy will make it difficult to have cold things and may cause cold from even the fridge uncomfortable for his hands...so make sure he has some gloves handy...order a clip for on the fridge door from Amazon...lol.

Keep coming back and the folks here will do their best to help you and hubby navigate this new world.

Hugs,

Marie who loves kitties

Val99's picture
Val99
Posts: 6
Joined: Jul 2019

Thanks so much! I've got all the info for the nurse navigator whom I've been advised to become best friends with. 

Yeah - the statistics just scare the hell out of me, and the Dr. told me today to ignore them. 

He does have 2 healing cats to help him along the way, so he's at least got them to make him stay in bed more to heal.

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

I was "given" a max of 5 years with my stage 4 diognosis in 2007.  Last night, I kayaked the length of our lake (7 miles round trip).  I think I'm doing great!

Alice

Val99's picture
Val99
Posts: 6
Joined: Jul 2019

That’s so wonderful to hear! I just feel so lost right now, and hearing how many have beaten this helps me feel better - thanks for sharing!

Annabelle41415's picture
Annabelle41415
Posts: 6183
Joined: Feb 2009

Sorry you have to be here and to hear about your husband.  He is so young but he has youth on his side.  It's good that you go with him on appointments because my husband did too.  When things are going through your mind, you don't necessarily pay attention to what the doctor is saying as you might be thinking ahead or digesting the information just told to you.  My husband always kept mental note of everything as it's important.

It's a good thing to write down in a notebook questions for the upcoming visit too.  You might think you will remember, but you won't.  Also let the doctor know of any changes to husband. 

The Oxy can be hard on the system and cold sensitivity is very common so be careful of touching, or being around any even the slightest bit of cold as it will send your husband into shivers and feel like shardes of glass.  Be careful drinking anything cold, going in the grocery store freezer isle or vegetables section as the more Oxy he gets the more cummulative this drug is.

You sound like a very caring wife and it is scary.  I'm so glad you found us as we can help you and your husband get through this.  We are a wealth of information and can answer almost everyone of your questions.  We have many on this board that have been here for a long time, like Ron.  He is a true veteran of this board and others as well.

Wishing your husband well during his upcoming treatment.

Kim

nicktacoma's picture
nicktacoma
Posts: 11
Joined: May 2019

Hi Val I have a similar story In March I was having what I thought was a heart attack turns out it was my Gallbladder I had a scan at that time and they found a large tumor in my colon Had surgery on April 24th to remove my gallbladder apendix and the colectomy for the tumor and 32 lymph nodes 18 of which showed cancerous cells so at that time stage 3 diagnosis got my port placed in May had a full PET scan in June it showed that it had pread to my lungs upgraded to stage 4,  3 nodules the biggest is 6 cm they increased in size since the first scan and one that wasn't seen on fisrt scan in March. I turned 57 on the 28th of June I currently weigh 180 lbs I have completed 2 infusions of Folfox 6 and so far the worst side effect that I have is the neuropathy in my hands. I will be starting a new chemo for the lungs not sure yet what I have a chemo teach coming up Friday on the 5th they will explain the treatments. I currently go every other week I'm there for 4-6 hours then take the pump home for 48hours then back for 1-2 hours for the pump to be removed. I'm very optimistic that I will beat this I have 2 young daughters that I plan on walking down the Isle some day my oldest just graduated from college youngest is a sophmore in High school. I hope your husband has the minimal side effects as we are all different. Good Luck prayers sent for you and your family.

So far So Good

Nicktacoma

Val99's picture
Val99
Posts: 6
Joined: Jul 2019

Thanks so much for the info - have you tried gloves to help with the neuropathy and if so, did they help? I was looking online at different types to help with the cold sensitivity and neuropathy, but wasn’t sure if they helped much.

You've got this - you can beat it!

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

Things move fast and get confusing.  Keeping a diary may be a good way for your husband to process what is happening, and also to track the treatments and their side effects.  It is so easy to forget what happened when.  Writing it down helps in two ways.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Welcome and I'm sorry for what brings you here. Our cancer centre provided a book with things divided into areas for things like keeping track of doctor's numbers and appointments and all kinds of things. I wish I could remember but I was in denial and didnt use it. I wish I had. You could make your own book, though. I wasn't organized and didn't write things down like what my initial stage was besides 3, no letters after that. I was told once but didn't write it down. My brother was diagnosed with cancer after I was (dofferent cancer) and he was meticulous. I thought it was such a good idea. 

I'm now stage four with mets to both lungs, my liver and back in my colon. Despite that I expect to live another 5 plus years at least. They found a chemo that works for me to keep the cancer at a certain level and so I'm onmaintenance chemo for life. It'll likely never be gone but I can live with it. There are several people on here who had stage 4 and are doing fine or very well, some are NED (no evicdence of disease). So anything is possible.

The thing is it's such a shock and it will take time to come to terms with the life change you two are facing. I was diagnosed over 5 years ago and still haven't fully accepted it. It just doesn't seem right to me or real. I suspect that the reason for the medical professionals you've encountered feeling sad for you, which is not something they ought to be showing, is because of the fight they know is coming up, not necessarily because they think he's at death's door. It's going to be tough. Your husband is going to go through some real crap and that's the truth. We all respond to treatment in differing ways so nobody can say what it will be like for him but it goes without saying that it's not going to be fun. But it's doable. And when I get through another setback I feel empowered. People will say 'I don't know how you do it, your'e so strong' and they're absolutely right. I never woukd have thought I could do the things I have, I was scared of needles before this. But when you walk through this fire and come out the other side and know you did it, it's empowering. 

I'm glad you found this board. You'll get some great information from people who have been there while your oncologist won't have the time to tell you everything or even know what it's like to live with it. And nobody can understand like we do.

Jan

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

I know how lost you must feel. We have all been there. I will be honest with you... In the following weeks it's going to be tough. This sh1t is not easy. You have to gather your strength and be brave and be ready to fight.

No one is going to take care but you. Get the best team working... Oncologist, surgeon, whatever you need. Get second opinions. Push for care. Start a relationship with your team of doctors. Get them in invested in solving this problem.

Remember we are here to listen when it gets hard. Sending you love and strength to face this.

K

shu273's picture
shu273
Posts: 33
Joined: Apr 2019

Quick question before I reply? Did he or will he be having surgery and what is his specific diagnosis? Were Lymph nodes and other organs involved? Thanks, this will help me formulate my reply.

Andrea

Val99's picture
Val99
Posts: 6
Joined: Jul 2019

They've just said Stage 4 Colorectal cancer which has spread to his lungs. The 2 lymph nodes close to his colon are inflammed as well. 

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