Boyfriend Just Diagnosed...

Hi all!!

I have been reading here for a while...and have appreciated SO vey much everyone's stories.

My BF was diagnosed stage 3 on 2 january...he is staying with me...and kids... as we are closer to johns hopkins...our hospital of choice.

The 'j' tube was placed yesterday...he is still in much pain.  I am afraid of what to expect...after radiation...chemo...and then the "big" surgery if the feeding tube has been this difficult for him in terms of pain.

They also found a spot on his left tonsil...and we go in friday for a biopsy on that...*sigh*...

I want to be supportive...and want to meet with some docs to discuss pain management...but feel 'odd' as I am the GF...not the spouse...or a family member.  We are discussing medical power of attorney...his family is in NY...but I feel akward...

It just pains me to see him in pain...with what is 'theoretically' the easier of the surgeries before him...

Any thoughts??

TY all for sharing!

Geesh...I MEANT the 'more difficult' of the surgeries...I am a mess!!

 

On 1/23/2008 gerette wrote:

Hi all!!

I have been reading here for a while...and have appreciated SO vey much everyone's stories.

My BF was diagnosed stage 3 on 2 january...he is staying with me...and kids... as we are closer to johns hopkins...our hospital of choice.

The 'j' tube was placed yesterday...he is still in much pain.  I am afraid of what to expect...after radiation...chemo...and then the "big" surgery if the feeding tube has been this difficult for him in terms of pain.

They also found a spot on his left tonsil...and we go in friday for a biopsy on that...*sigh*...

I want to be supportive...and want to meet with some docs to discuss pain management...but feel 'odd' as I am the GF...not the spouse...or a family member.  We are discussing medical power of attorney...his family is in NY...but I feel akward...

It just pains me to see him in pain...with what is 'theoretically' the more difficult (I saw your next post) of the surgeries before him...

Any thoughts??

TY all for sharing!

Gerette,

I am not qualified to give advice about family or legal matters, but, as one whose had "the surgery" (esophagogastrectomy - Ivor Lewis - in 2005), I am sure of this: Your boyfriend needs all the support possible. If that is his family and you or mainly just you, so be it.

Don't waste your energy worrying about things that don't/won't matter. Use your energy to support your boyfriend and yourself. Don't forget yourself.

Good Luck and keep us posted,

Steve 

 

 

It is such a shock when you are newly diagnosed and things are in such a turmoil for the patient and the caregiver.  I understand the hesitation about the power of attorney, but I think the patient should make the decision and should advise all concerned so everyone is clear and no blame can be placed on anyone.  Having said that, I agree with a previous writer about the need for energies to be directed to the wellfare of the patient.  This is not going to be easy, but you can rest assured that it can be beaten and has been many times.  He must keep up his spirits and his nutrition and that in its self is a tough job.  There are many of us on this board that are surviving years later.  This will take the better part of a year  before he begins to feal normal again, but he is at a wonderful hospital and he can get better.  Believe me, if they thought they could not help him they would send him home and only try to make him comfortable.  As far as the pain of the J tube, he needs to take his meds to stay ahead of the pain, not wait till he is in pain to take the meds.  My prayers will  be with each of you.  Keep us posted about his progress.

Gerri

Dear gerri and cyclist

TY both for your responses.  It is a great comfort to hear from those who have been through it!

I will keep all posted...and I know I will welcome suggestions from survivors as well as care givers!

Thanks again! 

 

On 1/23/2008 gerette wrote:

Hi all!!

I have been reading here for a while...and have appreciated SO vey much everyone's stories.

My BF was diagnosed stage 3 on 2 january...he is staying with me...and kids... as we are closer to johns hopkins...our hospital of choice.

The 'j' tube was placed yesterday...he is still in much pain.  I am afraid of what to expect...after radiation...chemo...and then the "big" surgery if the feeding tube has been this difficult for him in terms of pain.

They also found a spot on his left tonsil...and we go in friday for a biopsy on that...*sigh*...

I want to be supportive...and want to meet with some docs to discuss pain management...but feel 'odd' as I am the GF...not the spouse...or a family member.  We are discussing medical power of attorney...his family is in NY...but I feel akward...

It just pains me to see him in pain...with what is 'theoretically' the easier of the surgeries before him...

Any thoughts??

TY all for sharing!

Dear Gerette,

I am so sorry that we had to "meet" you this way but you've come to the right place for help, support, and advice. I am very new to this also (Dad dx. 12/18/07) but I have already learned to be thankful for the little things, focus on the stuff that will make a difference in the big scheme of things, and that there is some great pain meds out there! We tried several things for pain. Some just didn't work for him and others he had an allergic reaction to. But the drs. and especially the nurses worked hard to "customize" daddy's pain meds. He has a PEG tube and only takes oxycodone as needed. At one point they had tried morphine, demerol, dilaudid, and many a few others. My dad cannot swallow and this added to his pain and discomfort. They started giving him ativan in the hospital and it helped nausea, pain, and anxiety. We've cut wayyyy back on that now, but when he needed it, it helped a lot.

As far as the family matters go-it seems to me that you are the primary caregiver. If that's the case then you have all rights to go to drs. appts., ask questions, etc as long as it's ok with your boyfriend. It's very important that someone other than the patient be there to listen. You need to understand what is going on with him and you need to hear the details to give him the best care. Someone always goes with my mom and dad to the drs and they haven't regretted it. Inevitably the dr says something that everyone did not hear, or one of you remembers to ask a question the other forgot, etc. (Make sure you take a list of questions - but that's another post :)

I think it's important for your boyfriend to make the decision about who he wants to speak for him medically if the time comes when he can't speak for himself. Allow him to make the decision, support whatever he decides, and focus on supporting him and getting better!

One thing is for sure-having a loved one diagnosed with EC definitely puts things into perspective for everyone.

Please keep us posted on how you both are doing.

Take care and God bless!

Hi-I would have to agree with all of the advice given.  You my dear are"it".  Know that if you are the one willing to make the commitment and care in this very difficult time, then you are the "right" person to be there with him.  The drs and nurses who care for him will appreciate that you are there as a caregiver.  Sometimes "family" are not those who are most closely related to us.  Keep your head up, and know that we are here to help support you if you feel like you can't do it all yourself.  I don't know that there is anything much sadder than seeing someone doing intense treatment all alone.   You just have to know within yourself that you are doing the right thing, and stand your ground.

 

On 1/23/2008 gerette wrote:

Hi all!!

I have been reading here for a while...and have appreciated SO vey much everyone's stories.

My BF was diagnosed stage 3 on 2 january...he is staying with me...and kids... as we are closer to johns hopkins...our hospital of choice.

The 'j' tube was placed yesterday...he is still in much pain.  I am afraid of what to expect...after radiation...chemo...and then the "big" surgery if the feeding tube has been this difficult for him in terms of pain.

They also found a spot on his left tonsil...and we go in friday for a biopsy on that...*sigh*...

I want to be supportive...and want to meet with some docs to discuss pain management...but feel 'odd' as I am the GF...not the spouse...or a family member.  We are discussing medical power of attorney...his family is in NY...but I feel akward...

It just pains me to see him in pain...with what is 'theoretically' the easier of the surgeries before him...

Any thoughts??

TY all for sharing!

Hi Gerette,

I really feel for you because you seem so scared.

I was terrified when my husband was diagnosed in June with stage IVA. I read the litterature and got more scared.  He's 66 and I'm 64. We've been married for 34 years.

His treatment was to have radiation and chemotherapy and depending on his response to that, he would or would not have an esophagectomy.  He responded well to the treatment and was scheduled for an operation.  He had it done laproscopicaly at Dana-Farber in Boston with a J-tube placed at the same time.  The cancer was found to be almost completely gone with negetive margins and he now has a 50/50 chance of a cure.  He started with 5%!  Now there's a miracle right there!

We wish he could have had the J-tube during his chemo and radiation because it was really painful for him to eat or drink during the last few weeks.  I was worried about his nutrition because it's so important to the sucess of the treatment.  He was in the hospital for a week and not in too much discomfort at all.  He could control the pain meds they gave him with a pump to his IV.  In fact, during this whole thing he had a cataract operation that turned into a detatched retina, not related to his treatment, and the operation for that, he's been telling people, was much more painful than the cancer operation!  He's going to be on Erbitux as part of a study for another 4,1/2 months. It attacks the specific cancer cells.

Try to keep in the present and be hopeful.  Your BF needs your strong, positive energy and so do you.  As my sister, who had breast cancer as I did also, told me, "Don't go to that dark place!". And that is what I keep telling myself. It's not easy but the more I work on it, the easier it gets.

You are a blessing to your BF and I will pray for you both.   Barbara

Hi Girlfriend ,

 I had been diagnosed with stage 1 esophageal at the beginning of December of 07.  since then I have been through the gamit with all the scans, Surgery and unfortunatly, now chemo and radiation (they found cancer in 4 lymth nodes after surgery). I am a single person of 50 years.

My fortune has come with the fact that my wonderful girlfriend has been there for me and has been my caregiver. It has been a rough road, with multiple issues as I learn to deal with this. Our relationship is a long distant one. This means she has been away from her own home and cat (doesn't like to travel) since  January 14th. She has to leave soon to take care of her own important matters, And I will miss her. I have been lucky with a good support group of friends and I will have to depend on them while I finish Chemo and radiation. Y

Your support is great! Keep up the good work. He will need you, patience will be critical. I'm afraid I havent been the most pleasant all the time, especially when she's driving.

Best wishes to you and your loved ones, and here's to good health

 

Dear key-

Thankyou so much for your response!  I can hardly believe that it was only January when I first posted that!  Seems so long ago...

Pete had his 3rd of 5 rounds of taxol and cisplatin this past thursday...the 11th of 25 'glow in the dark' treatments today.  The throat biopsy was NOT cancer (thank god)...and he was/is able to participate in an iressa study.

The j tube remains tender...and leaky...but has been such a help keeping him well nourished/hydrated!  They 'threw' a few more stiches around it...but still tender and leaky...we would prefer it to be left alone until the surgery...if possible.

It is funny you should mention driving LOL! We drive 70 miles each way to johns hopkins in rush hour traffic!  When he feels well, HE drives!  THAT will be the test of our relationship!!  Maybe could be a relationship test for all!  YITE!  (Almost wish he had more sick days...MY hair is falling out! JOKE!)

I am glad you have the love and support of your GF!  Have her e mail me...so we can compare notes!!

TC!

Gerette/michele