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Introductions and looking for support

Introductions and looking for support

Posted by rkoonar on Feb 5, 2020 6:52 pm

Hello all,

I just turned 43 in Oct 2019.  In Nov 2019, I was diagnosed with stage 4 pancreatic cancer.  The cancer has spread mainly to my liver and a bit to my abdominal wall.  I started chemo therapy on Dec 6th.  I will be taking my 5th round on Feb 13th.  I have my first CT scan after chemo started on Feb 6th - it is a bit nerve racking.

I am currently off work so I can concentrate on healing.  I try to walk everyday.  But I find that I have little energy, but I try to manage a 3 to 4 Km walk when the weather is good.  My 3rd round was not bad, but this round took lots out of me.  I also have trouble eating most foods, so I am taking Resource to keep my energy and calories up.  I also found that I have kind of secluded myself at home, due to the lack of energy.  I do make it out to the movies and Starbucks once in a while.

I am just wondering if there other people around my age with stage 4 pancreatic cancer that are having a similar experience?  I am looking for ideas to overcome the fatigue so I stop becoming such a home body?

Thanks

Re: Introductions and looking for support

Posted by Brighty on Feb 5, 2020 7:30 pm

rkoonar‍  welcome  to cancer connection .     I'm so sorry you find  yourself having  to be here but reaching  out takes a lot of courage and it's the first step in getting help and support.    Cancer fatigue is very common..  as most cancer patients  will tell you.   Most people  feel fatigued while going through treatment.      Fatigue can depend  on many factors .    You diet for one.   You mentioned  you aren't eating much.    Most hospitals have a dietician.     They  might have some great suggestions for you that would help to get your energy back up.     Your emotions  are another factor.   How are you coping generally?  Depression can sometimes be  overwhelming  at a time like this.    Do  you have a councellor  to talk to?    Walking is a good thing, I'm glad you are doing that.   You might find it helpful to make a note of when you have the most energy during the day and do things during that time.   Keep a journal  or diary of when your best times are.       Maybe  during the times you are most energetic you can make plans to go out with friends.      Do you have a good  support system , is anyone helping you out ?     Your doctor  should also be made  aware of all your symptoms.    There are also social workers at every  hospital.     I want you to know you are not alone.    I'd like to make you aware  of our peer match program.    If you call 1888 939 3333 a kind person will answer your call and match you up with a peer close in age who is going through  something  similar  to you.      I'm glad you reached out.    You don't ever have to feel alone.    Like I said.. help is out there. .. you took the first step by reaching out.     
Help is out there. All you have to do is reach out.

Re: Introductions and looking for support

Posted by Wendy Tea on Feb 5, 2020 8:10 pm

rkoonar‍  Welcome to this site. You will receive lots of comfort and advice just like I did. Brighty‍ has made excellent points. I want to add you should keep up your social interactions, even if you ask friends to drop by your home. Set guidelines so no one stays too long.and I found if I asked friends to run errands, they were happy to do so. 
Best wishesp
Healing takes time and opportunity. Wendy Tea

Re: Introductions and looking for support

Posted by ACH2015 on Feb 6, 2020 7:14 am

Hi rkoonar‍ 

I have copied a link from the Pancreatic Cancer Forum from our site. To access this from the main page Click on Forums, then Click on Cancer Types then Click on Pancreatic cancer. You will find many discussions from members supporting someone in a similar situation to yours.

I also looked up the Pancreatic Cancer Canada website and found a specific Pancreatic Peer Support link that may assist you with 1 on 1 contacts, along with the other suggestions provided in this thread.

I'd also like to give you a link to a publication from the Canadian Cancer Society Coping when you have cancer is a resource I used during my initial diagnosis, treatment and recovery, and continue to use it today.

Cancer treatment can be isolating and mentally/physically draining for many reasons. Do what you can - when you can, and understand rest is a necessary part of treatment and recovery between those treatments.

Keep in touch, and keep moving forward.

ACH2015

Re: Introductions and looking for support

Posted by Cynthia Mac on Feb 6, 2020 8:24 am

Hi, rkoonar‍ , you’re walking 3-4 km per day when you can? You’re doing better than I, and I’m a caregiver!

Fatigue is one of those things that’s hard to advise about. Normally, fatigue can be overcome by moving (spend energy to get energy), but when cancer and chemo are on the scene, that generality isn’t always the best option. In this case, it’s sometimes a matter of your fatigue being a sign that your body needs the rest, and it can be challenging to know the difference between the two.

As has also been suggested, during cancer treatment, fatigue can be depression in disguise. My Dad has run into depression issues while in his cancer treatment, and his family doctor was really helpful in getting to the bottom of it. His oncologist, too. So, if you suspect you could be having some depression, please talk to your medical team. They really can help.

Welcome, and if there’s any other information you need, drop a line here or in the Pancreatic cancer forum, and hopefully we’ll be able to access it for you.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Introductions and looking for support

Posted by rkoonar on Feb 6, 2020 10:17 am

Thank you all for the great advice.

To answer some of the questions.  I do have a support network of family that helps me.  My wife accompanies me to all my appointments. My dad helps by driving me to my appointments. My mom helps with meals.  I do have friends that drop by.  I even made an effort to drop by my work a couple of weeks ago, when I lots of energy.  Everybody at work essentially dropped what they were doing just to meet with me for 15 mins.

However, with all this, I may have fallen into a bit of depression, since I am having trouble just doing simple things sometimes, such as going out to a restaurant or to a store.

Also, thanks for the link to the pancreatic forum.

Re: Introductions and looking for support

Posted by Lacey_Moderator on Feb 6, 2020 10:30 am

rkoonar‍ 

Thanks for checking back in with us. It sounds like you have a great support network. A cancer diagnosis can still feel very lonely. I hope connecting with others here helps you feel less alone in your feelings and experience.We are here to listen and walk beside with you.

I have moved this thread to the pancreatic cancer thread. 

Does your Doctor know how you are feeling? There is help out there and you deserve it!

Lacey

Re: Introductions and looking for support

Posted by Laika57 on Feb 6, 2020 6:59 pm

rkoonar‍ , gotta say, you sound like you are doing great (relatively) despite this major curve ball.
I'm impressed that you are walking this much, and working on getting out. My husband may talk about wanting to go out, but usually ends up in bed, asleep, by the time I get my jacket on.
don't beat yourself up about a lack of energy. Your body will need rest, but as long as you are working at doing anything other in the day as well, you are doing pretty good in my book.
hope your CT went well!

Karin
Have you hugged your dog today?

Re: Introductions and looking for support

Posted by Cynthia Mac on Feb 6, 2020 7:08 pm

rkoonar‍ , I encourage you to be very honest about your feelings and your symptoms with your doctors, if you can find the words.

My Dad had trouble articulating his feelings when his symptoms started, whether it was because there were several symptoms, or whether he couldn’t differentiate between physical or emotional sensations. He kept saying he had “depression feelings,” and through talking with family and his doctors over several months, it was  finally narrowed things down to either a stomach issue causing those feelings, or those feelings causing a stomach issue.

I feel that the medical team might have been able to “resolve” it sooner, if he had spoken up about his symptoms earlier.

I’m glad you’ve got a good support network. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Introductions and looking for support

Posted by WestCoastSailor on Feb 7, 2020 12:40 pm

rkoonar‍ 

Thanks for giving us the opportunity to support you. You can see that cancer has some common denominators - feelings we all have no matter what kind of cancer we have. But there is something at least initially about connecting with someone who has exactly the kind of cancer we have. So I'm going to use my exhaustive knowledge of other folks on the site (LOL not really - I'm just going to use the search function)that are dealing with pancreatic cancer and see if we draw them into this discussion. What say you folks?

Weepy‍  - Your profile raised the question of death? Some of my buddies on here have nicknamed me the "death doula." Not so much that I like talking about it but it is a reality of stage 4 disease. How are you coping with it?

Kuching‍ - we haven't heard from you in a couple of days. You have some thoughts for my new friend here?

hopes&prayers‍  - as a new member to the site I hope you don't mind me drawing you into this discussion. Fatigue may be the physical manifestion of the intense emotional and spiritual struggles that we have. Care to share with us?

I'm surprised nobody else has mentioned the peer match program. Canadian Cancer society has a program to connect folks with similar diagnoses one on one with a trained volunteer. You can sign up at https://match.cancer.ca/

Anything else we can help with? There are some really great discussions about this stage of cancer over in the advanced cancer section. I know guys have a hard time talking about some of this stuff but as a guy myself I can tell you this is a great place to talk about some of the hard s***.

Angus
My story: http://journey.anguspratt.ca

Re: Introductions and looking for support

Posted by Hope&prayers on Feb 9, 2020 3:26 pm

rkoonar‍ I have recently joined this forum as well with a story very similar to yours.  I was also diagnosed in November with stage 4 pancreatic cancer which has spread to my liver.  Tomorrow will be my 5th chemo treatment - I'm on Folfirinox every other week.  Are you receiving the same regimen?  I'm finding that the first week I'm exhausted but by the second week I gain some energy back.  I've just been planning quiet activities at home for the first week and some visits from family and friends.  I have three grade school aged kids (twin boys are 9 and my daughter is 7) at home so "quiet" is not exactly the best description!  I try to plan some fun activities for the second week when I'm feeling up to it, which gives me something to look forward to.
I hope your CT scan went well and that you will receive some good results.  Waiting is the hardest part....

Re: Introductions and looking for support

Posted by Joybell on May 28, 2020 8:14 pm

Hi all, my husband is 57 and just got diagnosed with pancreatic cancer. We have completed the first round of chemo, two more to go then
a CT scan to see if he is able to have surgery. He's had Trigeminal Neuralgia for 20+ years and we have dealt with that hideous pain and
the debilitating meds he takes for years. Surgery was only limited success, sometimes it still acts up, always of course at the most
inconvenient times. Hubby has lost 60 pounds already and so even though we've only done the first month of chemo, I am worried about
him losing more weight. He is fatigued for sure, for sure and most of time I just roll with it. He's not sleeping well at night so he's sleeping
in during the day, it's a roller coaster because we own our own business, COVID is here and life just seems a little scary right now.
The good news is, we are strong and have been through difficulties before, we will walk this path together as much as I can walk it with him,
but it is awful, awful, awful to see him in pain again...still, again....still, again and so on. I know that we can gather strength from each other
and I am sending whatever hope, love, strength, friendship, camaraderie and a place to vent anytime to anyone who needs it. These days
I am just grateful that he's still with me, frightened of the journey a bit, but having been seriously scared before, I know we can handle it.....most of the time.
Some days, not so up-beat, but I know that taking it just day by day helps. We don't have to solve it all today, we just need to get through today. That
keeps me going. If anyone needs a shoulder, or has any advice about how to help him with chemo, his arms are really sore from the chemo....
I'd love to hear from you. Hugs for now 

Re: Introductions and looking for support

Posted by Brighty on May 28, 2020 9:31 pm

Joybell‍ welcome.    I can already tell you have a kind heart .  Here you are going through  a rough time and you are reaching out to help others.     I'm so sorry for what you are going through.     I can relate to some of what you are experiencing.   .    I took care of my fiance  who had stage four esophageal cancer.   The weight loss  , the exhaustion and the rest.    The oncology will most likely  have a dietician  who will be able to advise you on the best foods he can eat in order to put some weight  back on.    Failing that,  there is the feeding tube which my  fiance had.    It was essential  that he gain weight and strength  no matter how.     Everyone  reacts differently  to chemo but what I have heard from everyone  is to stay hydrated.       Now I would like to ask you about your support system.    Do you have people  to talk to? To drop meals  off if need be, or help you out any way they can with the covid restrictions?      I would also like to emphasize to you the importance  of self care in this process.   Don't forget  to care for yourself.      Last but not least I would like you to meet 
@laika57 (sorry having trouble tagging) she is caring for her husband  with the same type  of cancer so maybe you can help each other out.     


 
Help is out there. All you have to do is reach out.

Re: Introductions and looking for support

Posted by Faye on May 29, 2020 11:28 am

WestCoastSailor‍ 
I am not sure but I had read read a memo from CCS that the peer support program has been suspended due to funding in these Covid times. 
Lacey_adminCCS‍  Can you confirm or deny this

Re: Introductions and looking for support

Posted by WestCoastSailor on May 29, 2020 12:30 pm

Faye‍ 
Yes peer match is suspended. This is an old thread that was recently reactivated. So let's use it to check in on some of the previous posters.

Joybell‍ 

My wife had pancreatic cancer, diagnosed at Stage 4. Eating was a challenge. We used to joke about the seafood diet. "See food. Eat it" We used a lot of ensure and boost to keep her energy up.

rkoonarHope&prayers , Weepy‍  Haven't heard from you for a while. How are things going? Any words of wisdom for a newcomer.

Angus
My story: http://journey.anguspratt.ca

Re: Introductions and looking for support

Posted by Brighty on May 29, 2020 1:47 pm

Joybell‍  yesterday  I wanted to connect you with Laika57‍  but had trouble tagging.     You are both going through  something similar.. caring for spouces with pancreatic  cancer so I thought  you may he able to help each other  out.   
Help is out there. All you have to do is reach out.

Re: Introductions and looking for support

Posted by Cynthia Mac on May 30, 2020 7:54 am

Joybell‍ , your resilience was very readable in your post,  your husbands, too!

As Brighty‍ Suggested, hydration before , during, and after chemo is very important. Regarding the food/ eating situation, I recommend “adding bulk” wherever you can. I tend to “hide vegetables” in my food to make sure I keep my nutrition up, and you could try going the opposite route to sneak calories into his food. For example, whey powder can be added to smoothies to bulk up their protein content, and you can add butter to gravy to add calories, serve creamed soups instead of clear soups - that sort of thing.

It’s wonderful that you want to reach out and help others, but please know that you take priority. The reason I’m posting this today is because I had a really bad day yesterday and needed the space. (Oh, I should tell you, I’m caregiver for my Dad who has metastatic lung cancer. Been his caregiver for 2 1/2 years, and he went into hospital this week, so it hasn’t been a good week.) So, I encourage you to take things day by day and even minute by minute when that gets too hard (but I rather suspect I’m preaching to the choir on this one - you’ve got more years at this caregiving thing than I do!)

Welcome, and I hope you find the support and caring here that I have.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Introductions and looking for support

Posted by Kims1961 on May 30, 2020 4:34 pm

Joybell‍  Welcome and thank you for posting.

Your post echoes of love, concern, compassion and hope.  We are here and sometimes just having a connection that you can share with, vent to or even just commiserate is helpful.  Cancer is a full emotional journey - with its tough days. I‘Ve come to learn that it’s ok to not be ok sometimes. Our posts can be hard but that’s ok - cancer can be hard.

So glad you posted.  Please keep us updated.  KIm
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Introductions and looking for support

Posted by Laika57 on Jun 1, 2020 10:31 am

Cynthia Mac:
Joybell‍ , your resilience was very readable in your post,  your husbands, too!

As Brighty‍ Suggested, hydration before , during, and after chemo is very important. Regarding the food/ eating situation, I recommend “adding bulk” wherever you can. I tend to “hide vegetables” in my food to make sure I keep my nutrition up, and you could try going the opposite route to sneak calories into his food. For example, whey powder can be added to smoothies to bulk up their protein content, and you can add butter to gravy to add calories, serve creamed soups instead of clear soups - that sort of thing.

Joybell‍  One thing, with adding butter and proteins - your hubby may need digestive enzymes to digest them. - if he hasn't got them prescribed yet, and has a hard time digesting fats and protein (diarrhea after eating specific foods), ask your doctor about it. It's called CREON and currently is pretty hard to find a pharmacy that has it in stock. We went out for ice cream yesterday, and he didn't bring it along, with, umm, not so great results. The dietitian actually went so far as to recommend a low fat diet. which makes packing calories into a meal pretty difficult, especially if you're also supposed to avoid sugars what with the need for extra insulin etc..
My hubby has turned into an eating machine and is still losing weight. I've got to constantly remind him to take his insulin and the enzymes. and try to get him to eat things other than sweets. he gets up in the night and drinks a boost, which has some nutritional value at least...

Hydration with the chemo is key. The chemo nurse can set up in home IV hydration post chemo if you feel it is necessary. And if the chemo is too tough on the veins, they can install a port. again, talk to your doctor or nurse.

and be sure to take care of yourself, too. sleep, food and exercise. it is easy to make it all about the partner who is sick and end up falling into a hole of upset and resentment ("you want what? again?"). the last thing both of you need is to end up fighting every day - take it from someone who's just working to get past that point. pride is not your friend.  accept as much help as you can get.

Best of Luck. 

PS. I did send you a message about a week ago. if you'd like to chat, let me know :)

Have you hugged your dog today?