possible Superior Vena Cava Syndrome

cinnabon64

I haven't posted for a while, as well, I didn't have any more news on Moms sudden death on July 30th.

We [dad sister and I] went to see our family dr hoping for some solid information and results of the tests mom did have before passing. Didn't get really any help, other than that it was probably SVCS that killed her.

None of the drs mentioned this before, or the possiblity of this syndrome before she passed, actually it was pbj I think who first mentioned this syndrome to me in my posted called "puffiness" on this board. I researched this syndrome on the net and found it to be most of the symptoms mom had. What i found to be interesting is that some of those sympotoms are they same as acid reflux. This is what we thought was moms biggest issue months before the cancer dx. Shortness of breath, hoarseness of voice, etc. It wasn't until the swelling of her face and neck took place that we realized it was something else.

So, it could take 4-6 months for the autopsy results to come back before we know exactly what it was that killed her, but dr said SVCS. He didn't have any results of her bone scan or blood tests, but said he would track that info down.

This waiting and not knowing makes it very hard to get any closure. My brother and family are out from Calgary this weekend [original trip scheduled to visit mom] We are having good times, and this afternoon plan on going to the cemetery and putting a bouquet of flowers on mom grave. My sister and SIL and I did alittle bit of arranging and planning on the scrapbook we are putting together for dad.

The town we living in is offering a 13 wk course called griefshare that we are planning to go to. First time its been offered and it is faith based as well. They even have a website called griefshare dot com to give you an idea of what its like. I think this will help us all, but, especially dad. He is a man of few words and hopefully this will get him talking.

The shock has pretty much worn off for me, but it still hurts alot. I haven't been crying near as much but it hits me often. The last few days have been difficult for dad as he took moms medicaiton to the pharmacy to dispose of, and the next day he payed the funeral bill. Kinda hard not to face reality when you are doing these things.

Prayers are still needed. Love you all

Bonnie
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Cinnabon

My Mom diagnosed with Lung Cancer
tumor surrounding Superior Vena Cava
on July 18/08
died July 30/08

testing never completed, many questions unanswered

Tera · Senior User Joined: 31 Dec 2007 Posts: 197

Hi Bonnie. Good to hear from you again.

The griefshare sound like a good idea. It will probably help your family to deal with coping with the loss of your mom.

The only thing I caution is this.....you noted that it was hard getting closure until you know what actually caused your mom's death, the SVCS, like your doctor thinks, or something else, and are waiting to find out what killed her. The problem with sitting and waiting for answers on this is once you find out what it was, it could cause some of your family members to begin to second guess themselves and think "what if....." "what if we'd known she had SVCS?" "What if we'd known she had ......?" In other words, it can cause more grief by causing some to think they should have noticed something and it may have made a difference.

Second guessing games are so hard and tear you up and as a result, because the outcome can't be changed, it could make the grief harder to bear. I played some of it myself....I thought things like I hastened my mom's death by possibly causing her to give up sooner when she went on hospice at a time she was resistant to Hospice (she was resistant because she didn't really understand what all Hospice entailed). I thought I should have made her go to the doctor sooner. Why didn't I press when I noticed she was losing weight (she was deliberately losing weight, going from 232 to 156...only when she got to her goal of 156, she kept losing....I should have known something was wrong....she kept saying she was full faster.) A glance at her food journal revealed she was getting between 500-900 calories a day! Yikes! I did show this to her doctor. She began having some bone pain that she attributed to her arthritis and was probably the bone mets.

Bottom line....the lung cancer killed my mom. I wanted more information from her oncologist and eventually decided not to seek it because it wouldn't have made a difference.....I couldn't bring her back, and would have only tortured myself with the knowledge.

I don't mean to sound preachy.....just please be careful that the knowledge of what it actually was doesn't cause more pain and grief. Once you know what it was, don't second guess anything. I have no doubt you and your family did everything possible and loved you mom and she knew it. Nothing will ever change that.

God Bless you. I will pray that you and your family receive peace.

cinnabon64

Thanks Tera for responding and for your words of caution. I am expecting that when we do find out that it will bring feelings to the surface again. I don't think they will be the "woulda coulda shoulda" type feelings but just the grief.

For my dad though, I think it will be important because he was blaming himself cause he couldn't find her puffers. The results will show him there was nothing he could of done that would of made any difference. Our dr said she probably had a "brain attack" and thats what probably killed her. It was so fast no one could of done anything. I just think hearing the words of what it was will help him let himself off the hook.
_________________
Cinnabon

My Mom diagnosed with Lung Cancer
tumor surrounding Superior Vena Cava
on July 18/08
died July 30/08

testing never completed, many questions unanswered

Tera · Senior User Joined: 31 Dec 2007 Posts: 197

Bless his heart, I know he has really got to be hurting. You are right, Bonnie. The results will probably put his mind at ease.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1386

Hi Bonnie,

It's really part of the natural process of grieving to double think everything that went on during the final times. I've beaten myself up more times than I can tell you that I should have done something, anything to help my dear husband.

I felt like I was totally inadequate at the end and it takes a lot of time for those feelings to subside. I had inhalers, nebulizers, and was tweaking his oxygen and still couldn't stop what was happening. His cancer had affected his heart and I was supposed to be checking the beat and rhythm. I blew it and messed up the whole heart thing. It was totally above my abilities to deal with the sudden onset of a culmination of symptoms that led to his quick decline and passing. Had I done something sooner, called for help sooner, maybe he could have survived. I have arrived at the point where I realize that he might have survived for what? To go through another crisis and be miserable again for what? A day or two? Still, I can work myself up almost to a panic attack thinking about all of this to this day.

I feel terrible for your Dad and know what he's going through. It's a real heart breaker. Please let him know he's not alone in these feelings and that this guilt does gently decrease in time. It doesn't do any of us any good to do this to ourselves, but most of us can't help how this plays with our mind. I simply try not to go into that dark place most of the time. Please pass this along to your Dad with my hugs and prayers.

By the way, Tera is one wise woman.

PBJ
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Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

cinnabon64

thanks for your words, pbj (((hugs)))
_________________
Cinnabon

My Mom diagnosed with Lung Cancer
tumor surrounding Superior Vena Cava
on July 18/08
died July 30/08

testing never completed, many questions unanswered

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