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Reply by Tian
24 Sep 2015, 4:42 PM

Dear wits end

After all you have had to deal with, the terrible shock you had at the radiologist's news is perfectly justifiable. To be blunt I think you have been done a disservice by the doctors who previously treated your mother. They should have not left you in the dark for you to speculate about your mother's decline. I don't care how good a doctor is technically. If they avoid telling you what the situation is and what the prospects are, they are not a good doctor. No one, even the best doctor, can predict the future but they can give you their opinion for whatever it's worth. In the future I would suggest that you not be intimidated and ask doctors whatever questions you want and persist if necessary. You are owed the best information they have keeping in mind that it may not ultimately be right and subject to change. You already have too much stress and uncertainty in your life. Don't let doctors add to it by withholding information.

Tian 
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Reply by JennJilks
27 Sep 2015, 3:27 PM

I read a wonderful book. Here is my book review.
What Dr. Gawande suggests is that the doctors ask us these questions.  

Questioning techniques on the part of the physician

    1. What is your understanding of your illness at this time
    2. What are your personal, immediate goals?
    3. What are your plans?
    4. What does quality of life mean to you? (E.g., No catheter or colostomy bag.)
    5. What are your priorities?(e.g., pain control, or quality of life?)
    6. What are your fears and worries?
    7. What are we aiming for: curative or comfort measures? 
    8. Do you want a long life or to have the best days possible in the time remaining?
There are side effects with many treatments. For example, radiation can lead to weight loss, some report being unable to taste food, others facing chemotherapy are unable to have a social life.
Along with this, I have put together a number of Questions to Ask Your Doctor
Patients, or their caregivers, must ask the hard questions to determine whether the treatment plan will interfere with quality of life.

Essentially, with seniors there are:
    • statistics that can predict the quality of the treatment,
    • its impact on the patient and caregivers,
    • and the probability of its success.
A patient and family must ask:
    • about treatment options - you need NOT have the treatment if you choose not to.
    • how far the disease has progressed (i.e., is it in the lymph nodes?)
    • what is the prognosis?
    • about the impact on the quality of life during treatment
    • about the impact on the quality of life after treatment
    • How can I avoid or relieve my symptoms?
    • How can I relieve pain? (Agitation or pain? Get a pain management kit if you are at that stage of the cancer.)
    • If removal of lymph nodes is suggested: what is the impact of lymphedema?
    • How much time you will gain and at what cost?
The impact of radiation can vary widely with patients, but one result of this treatment is the destruction of infection-fighting antibodies. My father fought a urinary tract infection undiagnosed in the emergency ward, and he was sent home incontinent and unable to function with the side effect of delirium.
The need to determine the outside resources available if, for example, the patient is incapacitated by radiation treatment or chemotherapy. In Ontario CCAC will help with this.
Rx
Ask if you are taking the right medications, in the right amounts. Your pharmacist will help you. Ask if the medications are doing you more harm than good.
Ask if they are necessary.
Ask if they are improving the quality of your life, or making it worse.
Ask yourself if the benefits outweigh the side effects. 
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Reply by Carlyn
13 Oct 2015, 12:35 AM

Dear Wits End,

I've just been reading here to catch up and see how you're doing. How is your Mom? And you?

If you're up to writing and need support or just want to vent, please know we're thinking of you and we're here. A lot of wise, very compassionate people here.

No pressure though. I just recognized it's been a bit of time since you last posted and wanted to send a virtual hug of sorts.

Thinking of both of you.

Carlyn 
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Reply by wits end
13 Oct 2015, 12:41 AM

Well I have an update on my Mom. We were told Sept 21 by the radiation oncolgist that Mom might have 3-6 months maybe a year if she takes targeted radiation. Mom made the decision to take the radiaton as we were also told that she has a mass on her lymphnode behind the breast bone. I am furious that we weren't told before. They said well we new she had mets! Well no we didn't.
Now I worry that Mom has decided to take the radiation (she knows the risk it could possibly shorten her life).
My thing is she has been told this now and it's Oct12 and still waiting to hear form the CT department to set up a scan so she can be simmed for treatment. You would think if they finally gave her a prognosis that they would be a little quicker in setting it up. After all that is 3 weeks out of the 3-6 months they give her.Yell
As if I don't have enough stress already now we are playing a waiting game within a waiting game.......I just want to runaway.
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Reply by Tian
13 Oct 2015, 4:11 AM

Dear Wits End

Devastating must be an understatement to describe the news you received from the radiation oncologist. How did your mother react? Doctors failed in informing you about your mother's situation but the cold reality is that nothing can be done about that now. As extremely difficult as it is I think you need to forget about their failings and focus on how to proceed from here. It appears that your mother is capable of making decisions so if she wants to receive radiation I think you need to respect that. Whatever happens, I think quality of life has become the priority. I suggest that you find out what services are now available for your mother and for you and be willing to accept anything with any chance of being helpful. 

The system being what it is you probably still need to rely on doctors who may have shirked in their responsibilities before. Circumstances are such that they are more limited in what they can do but don't be afraid to ask questions and if you are not clear on what they tell you have them explain things better. You are owed that.

How have your sister and other family members reacted to the latest news? Have they become more willing to help your mother? Do they realize she needs more help now than ever? Are they still oblivious to the toll all this has taken on you? You will always be heard here.

Tian

 
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Reply by wits end
13 Oct 2015, 10:49 PM

When Mom made her decision she cried. That was hard on all of us. My brother and sister were also very upset. Yes they are aware and do not live in this city so I am basically looking after Mom by myself with occasional help from friends. They know what I am going through and the toll it has taken but there is not much they can do to help. They both work in other cities.
I am happy that people actually take the time to read what I put down. It helps in a small way to know that people care.
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Reply by Tian
13 Oct 2015, 11:38 PM

Dear Wits End

It would certainly be more helpful if your siblings lived nearby but don't underestimate the importance of moral support. Hopefully they will be communicating often with you and your mother and come to visit when possible. As bad as things are now it can easily get worse and you will appreciate any support you can get. And because you are the main caregiver be sure that you don't neglect yourself. You will not be able to attend to your mother's every need all the time and maintain your health and sanity. I think that you should accept help whenever you can and don't feel guilty about taking time for yourself. Your well being is in your mother's best interest.

Tian 
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Reply by wits end
23 Oct 2015, 2:01 PM

Well here I come again with some venting. My mom has had nsclc for 9 years. Wednesday we go to Dr in London to sign papers for her to get some palative radiaton which will start the following week.
My problem right now is that I don't feel like going to this appt. I am tired of all the traveling to London. I am just so tired of running to drs appt. They come more frequently now. She will be having 2 weeks of radiation and that means more running.
Does this make me look selfish? I have been through all her appts for 9 years and I just don't want to go. My sister will be there as she lives in London and I know my aunt will take her.

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Reply by Carlyn
23 Oct 2015, 3:49 PM

Dear Wits End,

I'm popping in with hope that I can give you some ammunition to wake your siblings up... :-) I've been where you are.  Please sit down and know this is delivered with great empathy and hope that it will help you and your Mom and other family start talking straight to each other. Because if you can do that, your Mom suffers far less and by extension so do all of you. ((Hug))

VON and CCAC both were fairly beside themselves when I was caring for my parents as they were at end of life. Both agencies, nurses and support workers all advised "It takes a minimum of 3 people to care for 1 person at home and you are doing 2 people by yourself. You need respite care." Well, I was the only adult child in town so it fell to me but it was hard. And we lived minutes from the hospital. What you have been writing resonated with me so I want to chime in so you know you're not alone and also pass on that wisdom given to me.

You are out of town it sounds like. Your Mom is in need of close, attentive care. Your sister is in the city where the treatment your Mom has chosen is going to take place. Your sister needs to step up and your Mom needs to stay with her.  If your sister can't or won't, your Mom needs to know you can't continue on this pace without help. And if there is no help for you, then your Mom needs to reconsider her choices. This is not about blame. This is about making reasonable safe choices for your Mom's care and your ability to keep going. Because if you drop, it sounds like your Mom will really be in a scarier place. She needs to understand this. You all do.

If your sister lives in London, it would be better for your Mom if she stayed with her. It's because it's not just the treatment, it's the symptoms which occur during and as a result of treatment. A 3 a.m. crisis is better handled with the treating hospital close by in my experience. 

Have this conversation with your Mom and sister - sister first maybe. The two of you discuss what you're each able and willing to do. Then approach your Mom. Please do all this with kindness, respect for each other, love if it's there, but firm personal boundaries. You are at risk of hurting not only yourself but your Mom and I know that is the last thing you want to do.

I know you can do this. I did it. It sounds not so great or fun but it makes everything easier and helps your confidence which gives you an energy boost to keep going for your Mom in whatever way you want to. 

Sending good thoughts to all of you. This is a very difficult time. It's okay to take the lead and get everyone making smarter decisions. Stand your ground. Maybe they've been waiting for you to do it. People rarely tell us so but I've learned that's the case sometimes. Always stressful getting to that point however I know.

((Hug))
Carlyn 
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Reply by wits end
23 Oct 2015, 4:41 PM

She will be staying at my sistes during the week and i will be going to London and picking mom up for the weekend, then taking her back. I really need to know if I should go to yet another appt or just relax without guilt. I know she will have someone to take her. I have been to all her appts and i am just getting burnt out from the 3 hour round trip and sitting at the hospital. It feels as though this is what my life is now.
Thankyou Carlyn for undertanding
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