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New Year and scared

Jackiee_pi
Posts: 1
Joined: Nov 2013

I've been checking in on this site since June, when my father was first diagnosed with RCC, which (according to the spread of it) seems to be stage IV (no one ever outwardly told us). He was told he had an 11cm tumor on his right kidney, and also found out the cancer had spread to his lungs, brain, lymph-nodes, and adrenal gland. This was all a shock to my family... and we have been on a hell of a ride. He had brain surgery in June and received 5 doses of radiation to his brain mets. The hospital also placed a catheter in his pleura lining since it was filling up with fluid frequently. He had began taking votrient, but found it wasn't doing much to reduce the size of his tumors and it also made him feel crummy. His oncologist at MSK decided it might be a good idea to try a clinical trial of either Everlimus or Inlyta...a day before he was going to start his testing to see if he would be a good candidate for the trial, he had a seizure do to the radiation (which was about 4 months earlier). That was a terrifying experience, that my mother and I witnessed, and we were sure he was dying. He was put into the hospital again to be watched...and during that time had his pleura catheter removed, and had a fluid pocket in his lungs drained. He was put on a steroid and Kepra and experienced loss of hip strength, since November he has needed my mother and my help to get out of chairs, take showers and get up stairs. He has also been doing Afnitor chemotherapy twice a month. As of lately he has been experiencing horrific back pain which leaves him bed-bound. He sleeps a lot of the days and when he is awake I find him staring off. My mom tells me he talks a lot about not being alive and how he doesn't understand why this is happening, he is afraid to die. 

He is such a strong man, who has been through so much in his life and I am afraid for him. I don’t want him losing faith, I can see him slowly fading off. He barely eats or drinks, he doesn't talk... he is someone else. All I want is for this year to turn around, I want to see him living his life...seeing him in bed all day is heart breaking especially since I know he doesn't want this. I am so scared of what this year has to bring... but this forum gives me hope. I have read a lot of survivor stories, and it restores my faith.

I don't talk about my fathers illness, so it was difficult writing this. 

I hope you all have a happy and especially healthy new year, bless you all <3 

 

 

 

Nu
Posts: 1
Joined: Sep 2013

Jackiee, you are describing my husband.  He also had a radical nephrectomy in April 2013, started Torisel, May 2013, now on Votrient since Nov. 2013.  He's not the man I married 29 years ago, but how could he be with this horrible disease!!  I have found that you have to read up a lot on mRCC and educated yourself as much as possible to find what works for your dad to make him more comfortable.  If he feels better, his outlook will be better.  It is a frightening experience and I still feel that I'm in a horrific nightmare and just haven't been able to wake up!!  It's so painful to see your loved one ill and suffering.  My husband is coming off of whole brain radiation treatment due to multiple brain mets.  He also has mets to the lungs.  All I can say is breathe...pray...breathe...and pray some more.  Work at what makes him comfortable and constitantly tell him you love him and your there for him and will never leave his side.  This is all so scary for him and his mind is all over the place, hence the staring into space.  My hubby does that all the time and when he gets to that point I simply ask him what he's thinking about.  We cry together, go to the "ugly" place together, and at the end of the conversation reassure him that we are ALL in God's hands.  Live in the moment and let's see what tomorrow my bring.  Peace to you and your family.

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

What a rotten disease. Reading this is what makes me say that I've had it easy. Bless you all and good luck.

Jojo61's picture
Jojo61
Posts: 477
Joined: Oct 2013

You have had a challenging year. There is nothing worse than watching a loved one suffer like this.

Medications have come a long way - many people here are testament to that.  Keep the faith.

It is good that you reached out here on this forum. Keeping this all to yourself is not healthy. This forum is great for support and advice.

Take care!

Hugs

Jojo

a_oaklee
Posts: 176
Joined: Nov 2013

I'm so sorry for what you and your family are going through.  You will all be in my prayers. 

I only had one suggestion to offer.  I am sure MSK is treating your father well, but sometimes things just get overlooked.  My husband was referred to a physician who is a symptom specialist.  This doctor was wonderful and life improved.  It sounds like your father needs better pain control management.  Maybe they can do something else that will work better.  There is medicine called Megace that was given to my husband to make him have an appetite.  It certainly worked well.  This doctor also gave us ideas for high calorie smoothies.  We also found those nature sounds CDs very peaceful and relaxing.  Some patients take antidepressants.  I sincerely hope your fathers condition improves.

Billy&#039;s Wife's picture
Billy's Wife
Posts: 27
Joined: Jan 2014

God Bless you and your family Jackiee.  It is so hard to watch our loved ones suffering.  My husband starred off alot too.  I have learned that when a person is that sick they too need time to grieve.  So at times we talked and cried and at times I left him to his thoughts.  Nu is right when she says to breathe...pray...breathe.   I still can't believe how much Divine Intervention was in our journey.  Jojo is right too when she said that she's glad you reached out.  Everyone is different, I know people who will not join support groups but cope on their own.  I have always been a joiner.  Not only that but I have found that our friends don't want to hear how much we suffered.  I think it's because they love us and it makes them feel bad.  I have found that sharing with 'new' friends (I can't say strangers because nothing bonds you faster than this pain we share) is safe and healing just to know you are not alone.

In closing Jackiee, you have 'new' friends praying for you and your family. 

Arleen

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