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Marynb
Posts: 1134
Joined: Aug 2012

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sandysp's picture
sandysp
Posts: 852
Joined: May 2011

Mary, 

Try to stay here one day at a time. You may not have mets. The diarreah also may be due to other reasons. You may have an opportunistic parasite or virus.

I am seeing a Pulmonologist in April that specializes in immune deficiency. Has anyone checked your immunoglobulin levels? My internist did and I am low in one. The freckles on my lungs are likely cysts. I also have a granual and a lymph gland that lights up. I will let you know what they say. But now I know it was caused by CVID and the bronchiechitis (sp) I got from repeated inflammations. You may have had "walking pneumonia" and not known it.

What I am saying is, there are lots of reasons why you may have spots on your lungs besides mets. We will likely have to have a biopsy before surgery. Not a lot of fun, but makes sense, don't you think?

Anyway, make sure you get more than one opinion.

I think you are going to have to let go of wanting to work so your 22 year old can go to graduate school for a while and concentrate on your health. Everything else will fall into place if you do that. You need to rest when you need to rest. Cancel appointments if you have to and rest.

I know it's easy to say for me. I am so sorry about the financial difficulties. That alone must be wearing you out.

You are in my prayers.

Love,

Sandy

Lorikat's picture
Lorikat
Posts: 566
Joined: Jul 2011

Whine away!  I'm 63 and age with post treatment side effects are difficult.  .....  God bless you and hugs!

 

pializ
Posts: 302
Joined: Nov 2012

Now then Mary! One step at a time. 

Firstly, the recent diarrhoea could have any one of a number of causes. I understand the issue regarding restroom & dignity. However, do they not have a disabled restroom at work that you could use? They don't need to know of your diagnosis (I HATE having to disclose how my body is affected by the treatment), but you have handled so much already, you CAN handle this. This may well pass. 

Secondly, you don't know for certain that you have mets. We all know how hard it is to not jump into the future with negative thinking.  But that doesn't achieve anything & only robs us of precious minutes, hours, days etc. Try to hold on to 'these are thoughts, not facts'. Not meaning to be patronising, but I find mindfulness techniques most helpful in situations like this. 

Thirdly,  whinges are good for us all. We cannot always be on top form, coping with everything that is thrown at us. 

Also, importantly, you are not alone in dealing with this. We are all here to  support you. I think of you often. I have an app on my tablet that I use to identify the planes that fly overhead.  Admittedly not s frequently now as I was able before I returned to work, but when I see a plane en route to Boston, I see you, that mental picture I hold of you (Mary Tyler Moore) which is probably completely wrong.

Sending you hugs

Liz

mp327's picture
mp327
Posts: 3106
Joined: Jan 2010

Reading your post has made me sad, knowing the situation you're in and not a one of us here can help you.  However, we are listening and you can "whine" all you want.  I do not have children, but I think I can understand your strong desire to be around for your daughter, even though she is an adult and strong enough to take care of herself.  My situation is similar to yours in one way, in that I want to stay alive for another family member who needs me.  However, in my case, it's my 89-year old mother who has dementia and can not possibly care for herself at this point, which in that way makes my situation totally different than yours.  However, we are both striving to stay here for people who need us, so there's something in common.  I am sure that the financial issues are quite a burden for you, as well.  I'm so sorry that you are struggling with that on top of everything else. 

I hope that the surgeon will find another cause of those spots in your lungs--something benign and not threatening.  Please keep us posted.  I will think as many positive thoughts for you as I can muster!

Wouldn't it be nice if we were all located near each other.  I think a group hug is definitely in order here, but a virtual one will have to do.  (((( ))))  Please take care and know that you are in my thoughts and prayers. 

mxperry220
Posts: 369
Joined: Mar 2011

Your daugter must have her undergraduate degree.  If she wants to go to graduate school she can get grants, loans, and work to put herself through graduate school.  My parents were not financially able to pay for my college eduation.  I paid my own way and do not regret it to this day.  Maybe you can have a discussion with your daugter where she understands you can no longer financially support her.  She is old enough to be on her own.  She needs to be there for you now not the other way around.  Maybe your daughter is not fully aware of your physical and financial situation.  You do not need this additional gulit stress. 

Hope this helps some.

Mike

jcruz
Posts: 278
Joined: Jan 2013

So much of what you say resonates for me and I am sure for others as well.  I too must hustle to the public restroom shared with students (I'm in a university library).  Some days I go so often and I also feel that embarassment.  I hope you'll see a doctor and find out if the diarrhea is from something else or if it's a lingering side effect.  I have recently talked with my surgeon about trying proctofoam to help with the urgency and bleeding that I've been dealing with.

I am concerned about your statement that you don't discuss your cancer with anyone.  I have found my weekly counseling sessions to be so valuable.  I can talk about anything and everything, all aspects of my post-cancer life and everything else.  I know your faith will hold you and I am glad for you that you turn to your god for comfort.  But individual counseling or a cancer support group might also be helpful.

Take care of yourself first.  I think your daughter will understand.  If she wants to go to grad school she will find ways to fund herself.  And I think she will be happier knowing that you are taking care of yourself and that you are doing what you can to stay here in the world.

Come back here and whine some more any time.  I think we have all done that and we all listen and support each other.

Janet

Phoebesnow
Posts: 453
Joined: Apr 2011

I am so sorry you have all these burdens to bear.  

 

I like mikes advice.  

 

I hope all these situations turn out the way you need them.  The anxiety and worry is fuel for these diseases.  Maybe you do need to simplify even consider moving to a less expensive area.  I would really like to hear about you enjoying your life.  I bet your daughter would like that to.

 

God Bless you Mary.

eihtak
Posts: 886
Joined: Oct 2011

This journey takes us on a ride of ups and downs and some stretches of down are just so frustrating! You are often such an inspiration to so many of us so my heart goes out to you to hear of your anxiety.

Many people see having an ostomy as a problem, but in my case it has spared me of some of the isuues that you have to deal with so I can not really relate in that area but can only imagine some of the "public restroom" embarrassing situations you must deal with!

I do have a daughter the same age as yours who is in her 4th year of college though. She is the youngest of 5 and in some ways very independent, yet I know takes comfort in knowing (or at least thinking it is so), that she can count on me. She will ALWAYS have my unconditional love, prayers, and support, but did have to learn that once both my husband and I got sick at the same time, her financial security was up to her. It was a tough lesson to learn, but also ironic that she will be graduating as a finance major! She has been forced to seek various avenues and make connections, spend less, save more, and plans to continue on to graduate school herself.

One of the best gifts we can give our children is the skills to "do for themselves." Of course, like you, I wish I could make it easier for her.....but she will be ok.

We are all here for you when you need to talk, and that includes whine (its a free pass with this disease). Like others have mentioned, an in-person support group can do wonders for some. I too have a second cancer for which I deal with daily and have attended a few support groups. I don't go all the time but try to stay connected as my schedule allows. Topics come up that leave me feeling so much more at peace with my situation and it is so helpful to have the element of connecting a face, voice, and real person to the support.

Take some comfort in knowing that God has not put you in this spot to suffer but to refine, rebuild, and remold you into the person he has planned.....go with it, and have peace.

katheryn

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