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My mom is a Whipple Warrior

Started by WhippleDaughter

06 Mar 2015, 3:16 AM

In Jan 2013 my mom was diagnosed with pancreatic cancer, she has the Whipple procedure in early March 2013. She did a 6 month course of Gemzar Chemo and when she finished Chemo her cancer markers remained high, the CT scans showed nothing though and she felt great. In October she started to not feel well, nausea, vomiting bile and she had back pain. CT scan showed scar tissue and a hernia, her GP decided in Feb that she was going to have her surgeon and oncologist look at her again. My mom is now diagnosed with stage 4 metastatic pancreatic cancer, she has 2 growths, one affecting her stomach. She begins radiation next week. I have no clue what to expect now.

Has anyone else gone through this?

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Reply by EastCoastPEI

06 Mar 2015, 3:56 AM

Hi WhippleDaughter,

I haven't gone through exactly that; however, I can sure related to the feeling of "no clue what to expect now". I went from having a normal mostly healthy mother to discovering she had 3 brain tumours and stage 4 lung cancer over the span of a couple days. It was like everything was going in slow motion and the words the doctors spoke sounded jarbled.. it was an incredible amount to digest.

But, hour by hour, day by day, my sisters and I got through the diagnosis and the reality of it all. and we did our best to adjust to this new reality. It seems impossible at first that anyone can cope with a change like this but us humans are amazingly resilient in these times... or sometimes we're not.. and we need someone else to help pick up the pieces.

Do your best to stay afloat, don't be afraid to ask for help and support ( you're obviously already doing that by being here, but also with anyone you may have in person ) ..

We're all here for you and are most willing to provide as much support and guidance as we can give.

The other advice I have, and sometimes we forget to do this because doctors are giving us a lot of new information and we're trying to digest it in real time.. but we forget to simply ask that question straight to the doctor... "I have no clue what to expect now... what is next?"

Sometimes we forget to ask this, a lot of times we're completely terrified to ask because we're afraid of the answer. Do what is right for you.

Stay in touch.

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Reply by KathCull_admin

07 Mar 2015, 7:44 PM

Welcome to the community WhippleDaughter. Sounds like the last couple of years have been a real roller coaster of emotions and physical changes. It can be such a difficult cancer to diagnose as well. My brother was also diagnosed with pancreatic cancer and had the same surgery several years ago along with the chemotherapy.

I think EastCoastPEI's suggested question for healthcare providers is a very good one, "I have no clue.... What is next?"

Are there others in your family who provide care for your mother and support for you?

Although the situation may be quite different from your own, I thought you might be interested in the thread started by Nouce, how to be patient and hopeful.

Take care and hope to talk again soon.
Katherine

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Reply by moderator | modératrice

12 Mar 2015, 5:27 PM

Hi Whippledaughter,

I'm thinking of you today. I think your mom started radiation this week. Do you have to go to the cancer centre everyday? Do you have to travel far?

We would love to hear from you, but if you can't respond right now, that's okay too.
Colleen

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Reply by WhippleDaughter

13 Jul 2015, 9:29 PM

Thanks for the support all. I haven't signed in for a while. My mom completed her radiation but it didn't do her any good, after the first week she became tired as they had suggested she would but she never bounced back. Her energy slowly decreased to the point of me having to go to her apartment at all times of the day and night to lift her from the floor because she had fallen. She was admitted to hospice just over a month ago, some days are better than others but every day is on a slant, she now can't get out of bed. Her mind is awke but her body isn't.

I am exhausted, I work an hour from home and she is a half hour away from him in the other direction. My work has been forgiving with time off but insurance isn't and every time I take time off the issue of finances become so stressful. Insurance always makes me feel horrible for my coping skills :( and always suggests I may not be approved.

I have two small kids and husband that is totally supportive but at times I feel like if I have to take more in I may explode. A couple of weeks ago mom got a UTI but the Dr thought she was septic, I had to call family which did come but everyone is estranged and it wasn't great for her, especially since nobody came after that day they thought she was dying nor inquired again. Now I am in the process of packing my moms apartment which is so very hard and I have to start planning her funeral with her (something she wants to have input in) I feel horrible when I am not there with her as I can tell she is lonely and going stir crazy being confined to the bed. She knows what's going to happen but keeps talking about Christmas and how she will decorate her room, it gets so sad at times. I do have sisters but nobody visits or calls her. I am so thankful for the hospice volunteers who stop in daily and spend time with her when I am not there and for her nurses who have really gotten to know her. But I do feel so very alone.

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Reply by KathCull_admin

14 Jul 2015, 4:12 PM

Dear WhippleDaughter - so good to hear from you again. I have been wondering how you and your mom are doing.

You have so much on your plate - both physical and emotional. You are so important to so many people as well - not least of all your children and husband – but you are human and can only do so much. And this is your mom – a very important person.

Good that you have the hospice volunteers - are there other resources that could be pulled in for you? I am not sure - you may have this information already, but Programs and Services (for the B.C. area) may give you some help.

Each person’s experience is unique but you might find some virtual support from the thread A Constant Cloud of Concern

Are there friends who support you?

Thinking of you.

Katherine

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Reply by AdoptedSon

14 Jul 2015, 5:10 PM

Hi WhippleDaughter

You sure are going thru a lot, but the fact is, you are going thru it, showing you are stronger than you think. Sounds trite, and it bugged the hell out of me, when people would say it to me, when I was caring for my Mom, but it also felt good, realizing that I was stronger than I thought.

We always second guess ourselves, feel we aren't up to the task, simply because we actually care about what we are doing. And yes it is almost overwhelming, but somehow, we do find a way to keep on going. You are stronger than you think.

Have you talked to your siblings?

Sometimes they simply arent sure how to act, if by going to visit, or offering to help you, they might make matters worse. I know, it makes no sense, but then we are humans, when do we make any sense?

As hard as it is, the fact that your Mom wants to be a part of that final process, is simply her being a Mother. It is her way to help you struggle thru the whole ordeal, and is a brave act, of Motherly love. It is one more thing to add to your list of things you shared with your Mother. And is one of the most important ones. I wish my own Mom had done that more with me, than what we did share. And yes, there were lots of tears shed, faces turned away, as the discussion went on, each of us not wanting to let the other know how much it hurt, because well, we were really saying goodbye to each other.

I dont know how, or why these things happen, but in our talks, in sharing those final thoughts, we dredged up many other memories, that brought a smile here, a laugh there, because well, it was that time. It was a way for Mom to know that as hard as it was going to be, that i would still have those memories, and she was right. I still do, even more so almost 2 years later. If anything they are more intense, more real, and that is all because we shared that final decision.

There really isn't much one can say, other than if you need to vent, need to have a shoulder to cry on, well that is what this place is for. It does help, even if all you do is read the posts, and I speak from experience on that one. It sure helped me.

Do keep letting everyone here know how things are, there are some really good helpful people here.

Keeping you in my thoughts

Ian

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Reply by Xenia

16 Jul 2015, 4:24 PM

Good Morning Whipple;s Daughter:

I have read your messages and the replies from CVH and as stated you are going through a very hard time and we offer our support knowing how difficult times like these can be.

Ian has wonderful insight into dealing with illness and pain of caring for a loved one. His understanding of dealing with a parent's illness has helped me when my husband, John, was under palliative care.

I found, as you will also, that we on Canadian Virtual Hospice share our pain of dealing with a loved one's illness and eventually their passing. I found so much encouragement, help and understanding from those on But Who Advocates for me.

I also received a great deal of help from the professionals on CVH, much more than from the hospital, etc. They gave me an understanding of my husband;s illness and learning how to deal with different aspects he and I would be going through up and until his passing.

Jimmie on the aforementioned message board gave all of us the comfort we needed during the times we needed to understand our feelings and do so without guilt. Guilt as the part I felt most caring for my husband, did I do enough, could I have done more, etc. etc. Jimmie helped me understand that I was doing everything humanly possible and not to blame myself for things out of my command.

We were fortunate to have good palliative nurses and a doctor who visited our home and helped me with his care. Our family was very supportive and that helped me during the trying times of caring for John.

Do keep in touch with us and you will find that even though we are miles apart we have become family. A family who supports each other all without reservation and with understanding having gone or going through the same situation you are now facing. We are here to support you and help you carry on day to day by posting and reading the messages.

With fond regards

Xenia

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Reply by Hangin in

16 Mar 2017, 6:28 PM

First off I can relate to your worry about spending time with your mom, worrying if she is safe, trying to hold a 'normal' family together at home and then of course to take time off and meet the financial level that you may need to carry on.

I have found that I am just plain bone tired. When I daydream I think of laying on a beach away, far away from anyone that needs anything from me; I have been running on cortisol for so long. BUT I am choosing this because it is important to me to have my dad at home as long as he can. He deserves it

I have siblings but they are so uninvolved and I had tried to call them to vent and asked for some help but they just turned around and complained that I am too moody and should just take good care of myself. They will come for a 15 minute visit, complain about the 'fridge being not too clean' and then leave! Easy for them to say. I guess one thing I do know is that this too shall pass - that this time is a particularly difficult one for us in our lives and one day it will be over and in our hearts it will be so meaningful to have done our best to make this time mean something. Anyhow hope that helps

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Reply by Hangin in

16 Mar 2017, 9:06 PM

Hi me again. My dad is in stage 4 pancreatic cancer and is elderly. He has no chance of surgery as he is too frail. We are going to the oncologist to see our options. Was the chemo Gemzar hard on your mom? Were the side effects brutal. I don't want him to go through any more suffering than he is experiencing already. Did she take Creon or has anyone had any experience with that medication? Thanks for connecting. I don't feel so alone anymore and scared which is lame since it is my dad and he seems to have come to terms with it all. The anxiety is the worst - how much longer does he have. The momentum of change article did help. Later.

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