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lsaut

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I'm having trouble supporting my step dad right now. I worry he is in the final stages of his lung cancer journey. An oncologist appointment in February and a CT scan of his chest and neck showed limited progression, but things have changed. His diagnosis (of stage IV nsclc squamous carcinoma) was in December 2015. No timeline was ever given other than 6-8 months at that time and he's done so well since then. I made an appointment with his family doctor for Tuesday - will have bloodwork (he is also diabetic) and a chest xray before then. He is angry and doesn't believe he needs to see the family doctor. He hasn't seen him since October, only visits with the Oncologist in November/December and one in February. 

We went on vacation last week. He spent several days in the hotel room recovering from the flight, ate very very little, and his skin and eyes have changed to a green/yellow colour. He is coughing much more and it is often productive, with nauseousness, especially after eating. He is blaming all of this on a cold, but he's had this "cold" since December (when chemo ended). His next oncologist appointment isn't until May. He is angry, irritable, and fatigued. Heck, so am I!  I am his daughter, full time caregiver, landlord, and one of few people in his life. I work full time in a demanding job, as does my DH, and have a three year old. Do I take time off from work now? Get more care? I am going to call our local hospice and find out about their services. His home nursing is on hold because it wasn't felt necessary once chemo was over, and he is generally self sufficient during the day, so I don't want to "baby" him with visitors and nursing, but I'm so worried. I'm lost. How do I deal with my grief, his grief,his care, my son's grief and everything else going on? I worry he heard DH and I talking about our fears the other day but I'm not sure. My marriage has suffered greatly but we are trying to hold everything together to get through this. I think we are in the worst of the storm right now. I know there aren't really any answers, but I needed to vent in a safe space. <3. 

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Isaut,

I'm so sorry for your situation. You are clearly overwhelmed, and who wouldn't be? Like you said, being caretaker, landlord, daughter, griever, full-time employee, wife, and mother all at once isn't something anybody can take on long-term indefinitely. 

One thing I wanted to ask you about are his recent symptoms and health:  if I read correctly, he finished chemo in December, but has had continuous symptoms of a "cold" since that time. He met with the oncologist in February, but after that appointment occurred, his eyes and skin began to take on a green/yellow hue, his appetite has decreased, and his cough became more productive? I would definitely bring this up with the family doctor on Tuesday, but also, don't wait until May to notify the oncologist of these symptoms. I go to my oncologist regularly for symptoms. The oncologist cannot help if they don't know what's going on. <3

Regarding his anger and frustration: I am not in his head, nor his heart, but I can tell you that from my experience cancer, losing control of your life, feeling like a burden to loved ones, and dealing with feelings that can't be shared with family members can be very frustrating. Does your father have any peers to visit with? Is he a veteran? If so, there will be local groups that would welcome him. Does he have any fraternal connections? Many cancer centers have support groups--those can be a great resource. A church men's group might work as well, if you are connected to one. A peer group, or even just one peer, can bring satisfaction to his life, which in turn might relieve some of the frustration and anger, or the manner in which it's directed. 

And you, dear one: please, please don't forget to take care of yourself. This is a tremendous struggle you are traveling. Vent away. Love your husband. Allow him to love you. Hug your precious child. I'm glad you are looking into Hospice services. They have wonderful care, and you need respite, stat!!!

Meloni

P.S. I didn't mean to provide a giant post of unsolicited advice. You are right in that sometimes there are no clear answers. I just feel for you so much. You are a wonderful human, and doing so much. It's obvious you love your father and your family. Please don't feel guilt in refilling your tank so you can continue spreading that wonderful love in our world. God bless you. 

 

 

Edited by Meloni
Just some wording.

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Isault,

You are doing all the right things.  Sometimes the cancer wins.  Your hospice inquiry appears to be on the right path.

I can't add to Meloni's suggestions.  I can't take away your pain or burden.  I can say I'll pray for peace.  We understand.

Stay the course.

Tom

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2 hours ago, Meloni said:

 

One thing I wanted to ask you about are his recent symptoms and health:  if I read correctly, he finished chemo in December, but has had continuous symptoms of a "cold" since that time. He met with the oncologist in February, but after that appointment occurred, his eyes and skin began to take on a green/yellow hue, his appetite has decreased, and his cough became more productive? I would definitely bring this up with the family doctor on Tuesday, but also, don't wait until May to notify the oncologist of these symptoms. I go to my oncologist regularly for symptoms. The oncologist cannot help if they don't know what's going on. <3

Yes - we brought it up in February and understandably were instructed to keep an eye on his symptoms (at that point weight loss was very minimal and cough was less severe, skin was good). In the four weeks since that appointment, we went on a planned family vacation and upon arriving home Tuesday, I called his family doctor. He was so weak on vacation - we even used a wheelchair. This was a huge change and I know it was a shock for us all. He brought many meals back up on vacation, and I don't know if it was because of vacation, or the coughing, or new nauseousness. He's eating so much less in the last month. My worry is that his last CT scan, in February, was only chest and throat (where his tumours have been) but the last MRI was in August, so we don't know about mets beyond chest and throat right now. There are so many things that could be going on. I don't understand what bloodwork can or cannot show, and frankly, I haven't educated myself to the fullest extent on those details because there is just too much to know. I've left it to the medical professionals to guide us along. 

My plan is to call the oncologist (or have the Family doctor call) after Tuesday's appointment. The oncologist is three hours away but is amazing and I know that they will help how and when they can. I'm delicately insisting that he see his family doctor (until now I've accepted his wishes to only see the oncologist regularly). I am not going to the appointment with him (I've only missed one or two in the last 1.5 years, but I think he needs to do this one on his own). The nurses are good to speak to me afterwards. I spoke to his family nurse earlier today and outlined all of my concerns. I was just notified that they are able to do a chest xray tomorrow and have ordered bloodwork for Monday. He is trying so hard to maintain his daily activities and functions but it is increasingly obvious that this is a struggle. Due to family turmoil, his divorce from my mom, and not having a huge social circle to begin with, he only has a handful of other people and honestly, it will be outside my comfort zone to reach out to them, but I am going to start doing so shortly. He needs visitors and unfortunately, I can't drop everything in the evenings and on the weekends, even though I want to. 

I appreciate the responses SO MUCH. It's nice to know I'm not alone. Thank you. 

 

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As follow up, he admitted to me Friday night that he has white stools and dark orange urine. He's had hiccups for days and is still very yellow. Something must be going on with his liver. Helps explain the increased confusion as well, about which he is very defensive. Blood work tomorrow and I'm certain Tuesday the family doctor will be pressing the liver issue. I'll call the oncologist tomorrow morning as well. I am looking at startinf compassionate leave after Easter but will see what the next few days bring. 

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I've been away from the message boards for a while and just saw your post. My heart truly goes out to you and I hope you can get some answers soon.  Please let us know how things are going.  Don't forget to take care of yourself too.....that's also very important.  ((hugs))

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Hi, Isaut,

Just wanted to check in and see how you're doing. Please post an update when you can. We are here for you!

Lauren
--
Digital Community Manager
LUNGevity Foundation

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