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First time here and I thank you for having this forum

Started by Anngee

23 Mar 2016, 2:28 PM

My husband has stage1V colon cancer with mestasis to liver and lungs. It took them 8months to diagnose, Then given 3 months maybe to live and now we are 6 months past any expectation and I feel like always waiting for a hammer to fall. He was told no surgery, no pet scans, and palliative chemo was only option. I have been on a roller coaster ride from hell and with my own health challenges finding this site has been a blessing. We finally were hooked up with a palliative care team and in the binder they gave us was this site. I am so so thankful. My husband has only told immediate family members and 2 close friends(I had to convince him to share the information with them so they can be supportive) about being termanlly ill. He wants to keep it that way and has since May 2015. I have supported his wishes and kept his "SECRET" but I am feeling very alone and as time moves forward very alone and isolated. He allowed me to tell my best friend (who he was considered a family member for over 45 years) but in not sharing I also don't get the support I need. So I am thankful for this site. I have to talked to my GP and other care givers that I need some help with how to be the caregiver in this circumstance and was some books which I read but on here I find the first hand experiances shared very helpful in I am not alone. I feel the onocolgist hides information from my husband (I think so he doesent focus on his health) But as a caregiver I really need some truths how things are Really doing. I feel kept in the dark because I am not the patient. Have been told this also their first concern is what my husband wants and needs. My husband told them all they can share the information and even put it in writing but it falls on deaf ears. please ignor my spelling. When the health care professionalls change appointments etc with next to no notice they don't understand the challenges I face trying to keep it together as my husband is also diabetic, one kidney , now cheemo and I drive him as he is not allowed during treatment weeks. As he becomes sicker the specialist still tells him he is okay to drive? So he does but it is scarey at times. He doesn't want to have his liscence taken away but really I don't want his chemo brain (affects of drugs) to kill someone. I could go on but it is never ending challenges I am trying to work through and get honest information so I can make informed descisions about his care. Or at least how to handle each new situation we are facing together through his illness. Thank you for listening.

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Reply by KathCull_admin

23 Mar 2016, 5:12 PM

Dear Anngee
Welcome to our community. I too am very glad you found us.

What a difficult, lonely time for you. You have been taking on so many roles right now. Wife, friend, cook, cleaner, driver, advocate... and I am sure others. Are there others in your family who can or do help out? Is there someone on your husband's healthcare team you could talk to - without feeling you are betrying your husband's trust - but because as you say there are things you need to know.

Do you and your husband have access to home care or nursing visits of any type?

Members on this forum understand and support you. You can know that your words are safe here.

Till we talk again.
Katherine

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Reply by JennJilks

23 Mar 2016, 7:27 PM

Angee, you poor dear!
What a time. I know how you feel. I've been through this as a daughter. You aren't part of the team. I had to fight this with my mom. She was ill, while making bad decisions for my dad. He had radiation which was terrible on him. Dad was a piece of cake!

In your case, you are a family. You are supposed to be treated as a family in modern day medicine.
Your hubby isn't making good decisions. He cannot. He is allowing his need for independence to cloud his emotions. If he isn't going to act like an adult, you may have to demand he change it up.
You're going to have to be part of the decision-making and the medical team must talk with you, not at your husband, alone.
This makes me so angry. You'll have to forgive me!
You must have quality of life as much as the palliative patient.

At least you have a realistic picture. The fact that their timelines on his disease trajectory are wrong, is quite normal. Once things settle down, post-diagnosis, it isn't surprising. I think it more important to understand the trajectory as your lifestyle changes.
You need to be strong, mostly for yourself. You cannot let the professionals hide from you and your questions. Nor can your husband.
When we go to appointments, I take my iPad and write down ansers to our questions, then email back to him. He can ask the Q, and I do, too. You will be stronger, once you have answers, as you have inferred.
Take care

I wouls suggest one thing first: set down some questions you should have answered by the oncologist.
Here are some I've found in my research:
questions to ask your oncologist
Preparing for your appointment with a specialist

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Reply by Anngee

23 Mar 2016, 8:43 PM

Thank you KathCull No I don't have anyone to help with the everyday stuff but we are now on the Pallitive Care team and yes a nurse has come for the initial visit and she will be following up throughout the rest of his illness. She did give me a number to call even in the night if I need it. The whole family will get the emotional help etc I need.

My husband and I both go to all the appointments together and we always write questions out in "our question book" to bring up at the appointments. But sometimes there are huge gaps between the specialist appointments so our questions don't get answered. The nurse will increase visits as needed along the way. JennJinks my husband is making the best descisions he can with the information he is given but the Drs aren't listening to concerns when things have changed. I have read all the information they have given me even about the choices he makes and I agree he has the right to them. There is so much more than I can convey about the situation but we both feel better that we can ask more openly with the palliative Care people that have just come on board. It has only been a week and so far we both feel a weight off of us. My husband even asked them if there is help for me in coping with this. So time will tell. They did get me here to this sight so it is a new step. Thank you for caring and sharing. It is more helpful than you know. Take Care

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Reply by Anngee

23 Mar 2016, 8:48 PM

Also in fairness to my husband it is hard to make an informed descision when you are told you are going to die then hand you 12 pages of end of life care when you just found out you have cancer. It was a wirlwind of hell for him and me after that. How can you make these choices when you don't know what there is and not been through before. It was like someone pulling a pin on a gernade, tossing it at us and then leaving us in the aftermath. When we asked for help ...month after month goes by and the specialist said you don't need that yet (palliative care) I found out we could have had it from the start. I shouldn't have to keep fighting for everything. I do it with my husbands blessings but he can't keep dealing with this when he needs to deal with daily living don't you agree. Take Care

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Reply by Loving Wife

23 Mar 2016, 11:11 PM

Hello Anngee,

How frustrated you must feel! There are not many things that can make a wife feel more powerless than having a very sick husband, dealing with the beauracracy of the medical system, and havng limited support. You are the primary caregiver and the person who is probably holding all of this together and yet you may feel like your needs are secondary...if heard at all. I can relate.

My husband has Stage IV Prostate Cancer and is paralyzed from the waist down by a metastatic tumor in his spine. He was diagnosed in October 2014. Because he was paralyzed and had to quit working immediately, he had no choice but to tell all of our family and friends. There was never a choice to keep it secret. But he will not discuss dying or planning for the future. The doctor knows he does not want to hear or discuss these things, so he does not. I go to every appointment since my husband minimizes his symptoms and I want to explain what I am seeing and hearing. Also, I have to get him there. I have told the doctor that I want him to talk honestly with me and he has. But it is very hard to get him alone. And I know it puts him in an awkward position.

Anyway, our situations are a bit different but I can say that the palliative care we have received has been a tremendous help. At least I feel heard and understood. The social worker has helped too. My husband won't even talk about the future with me, but he did talk in her presence about some of his end of life choices. He was unhappy, but he talked. I made notes and now feel more prepared.

I live in the States so here palliative care and hospice care are two distinct and different things. You may be in Canada and I don't know if they are the same thing there or different. My husband won't consider hospice and his doctor says he can still try more treatments. But so far, he has not responded significantly to any of the four treatments he has had. I want to keep trying too as long as they make him feel better and not worse.

I understand how scary it is to have a long stretch between appointments. You want someone who understands the disease to tell you what's going on. That has been hard for us too, but I am getting more used to it. Maybe now with palliative care you will feel like you have more of a team helping you. These people have a lot of experience too, and can be a good sounding board. I would say our visiting nurse and social worker are much more help to us than the doctors are. But the doctors are tne only ones who can get the medicines we need.

Everyone here is in your corner and knows how very hard it is to be a caregiver. Just being heard and understood has given me a boost and I hope it will give you one too.

Debbie

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Reply by Anngee

24 Mar 2016, 5:14 AM

Thank you Debbie your story really is alot more a like than different. You are right the palliative hospice team here in BC have only been involved in our case for one week but I have had more support than the last 9 months. Thank you for sharing your story it is not nice watching our husband change as the illness progresses but like you said having a life line to get things straight in our heads on what to do is so important. They treat the illness but for my husband it is also the mind and soul too not just the cancer. The home visit nurse was able to get my husband to verbalize his wishes (not all) but other than telling me some she was the first he felt okay to talk to. It was hard but the day after you could tell a huge weight was lifted off his shoulders. I knew that he knew finally someone will also be there for me. Being able to talk here with people going through a life threatning illness that effects them is helpful for me. So I am more hopeful about the support. Take Care and thank you. Please know I am here for you too. Leslie

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Reply by Marymary

25 Mar 2016, 12:48 AM

Hi Anngee - thank god you found this site - I feel blessed that I did for when it comes down to it @ TIMES you don't feel like talking to others anyway, same ol story just a different day. I so understand where you are at - that is what is good about this site - you are not alone.

I figured out the people who do know well they are not really that supportive anyway (incl family members) it's like if they come to close or something they might get it (weird) or it just could be they have to look at their own mortality - I honestly don't know. I was in a state of what the heck is wrong with people at beginning of his treatments - no calls, no how ya doing - no nothing - they leave you alone - strange strange strange. I seriously never would have thought the people who have stayed in the background have and they still are - just plain weird? Have to let that area just go and leave them be which I have done.

YES it is so frustrating with the dr's - my son's dad been dealing with Stage 4B throat cancer since Feb/15 and they have this way of saying something without really saying anything - you know. I have gotten to the point where I just state what I see or know and that is that. He is just being monitored now is what I received in Mar. so they want to give as little info as they can I think due to the patient who is going through it - hope is hope and giving bad news all the time not good so no news is better than bad is how I think they deal with it (the dr's I mean).
So yes in March came to conclusion of just giving that part up too, can't do it be frustrated and anxiety of what dr's do or don't do - I got real sick so that is why some things you just have to leave alone. Just for your own sanity and welfare and overall health.

I do get it and at least you found this little blessing - it's good. I am sorry you and your hubby have to go through this - not part of life that anyone wishes upon anyone - I so get that.

I do hope and pray you come and share get your frustrations out as well as when you are having a good day or share something that helps you along on your journey. Please do take the time out for yourself as I have learnt the hard way, bronchitis and just plain ol exhausted. for I put everyone else first and me not so much and I have been sick for like 3-4 weeks now so do please eat, get outside for a walk everyday and rest, sleep - try and relax (I know that's a hard one).

You know another thing I learned was what can I do today - don't worry about tommorwo or the next day or next week or month but what can I do today. What am I able to deal with today or what can I accomplish today or how can I be of help today to the best of my ability. That so does help. It seriously does - take good care of yourself ANGEE

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Reply by Anngee

25 Mar 2016, 3:43 PM

Thank you Marymary

I'm sorry you are going through all this too! Thank you for the tips and like you said sharing what is working and venting the frustration too is helpful. You have given me things to think about and I am trying to take one day at a time and find some happy stuff in there too. I find we have been sharing more memories of how far we have come with a few tears and some laughs about what was. I have been scanning old photos and my hubby is getting some joy in reminising times gone by. All the while my heart is breaking in side for us both. I was surprised and not surprised by your friends etc shying away as the too few my husband has told are doing the same. I know my husband has kept this news to very few because he doesn't want them to focus on the illness and in some ways does want to face the goodbye feelings he thinks will happen. He is trying to live each day the best he can but it is a lonely road none the same. For my family that knows they feel the need to tell (me only) their horror stories of what happened to their friends with cancer with all the gory details and it brings me to a dark place. So I tend to avoid the chats at all with them. Does anyone else experiance this? Not funny ha ha but funny these are the same people that don't bother you for years even to say hi and now they have tons of advice how we should be doing things. I guess with the exhaustion I feel these days I am more critical about the petty things people focus on. I value every day as a blessing and try to find at least one thing in the day to bring some joy. I hope people will share their ideas Marymary and thank you for sharing of your self. Do you have a special thing or place you do or go to get some stress release. I like to laugh. So the photos we have been sharing remind us of the times we shared and how we could laugh at a not so funny situation. Have a blessed day. Thank you

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Reply by Anngee

25 Mar 2016, 3:45 PM

I meant on one line doesn't want to face the good byes not the latter

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