Hello, I am new to all this

[Vortex]

Hi everyone

64 days ago my mother, age 55 years, was diagnosed with lung cancer. As shocking as it may sound, I do not know what type or what stage, but I do know its not stage 1. I realise after reading some posts here that I need an education, Lung Cancer 101.

But more than that, it has been really tough to watch the suffering. It looks like I have come to the right place for some support.

[RandyW]

its hard to describe where to start but...

Do you go to appointments with your Mom by chance? She should have someone go along with her and stay with her. It gets to be very long and lonely by yourself. Can you call her doctor if You can not go with her! You need to be on the lists of people in the loop!

Make sure she keeps a notebook of questions and answers to the questions and appointments as well.

Has she started any treatment yet? That kind of settles the emotions down some knowing that treatment has started.

Hang in there and we will get you on track ASAP!!

[Vortex]

Thanks for your response, Randy

Here is what I know

The first cancer they found was on some of her vertebrae. They then found cancer in one of her lungs, on her adrenal gland and lymph glands and on her femur.

They have done radiation on the bone cancer and she has started chemo, I am not sure what, but it takes 5 hours every 3 weeks.

In the last 2 months there has not been a single week that she has not ended up in hospital for some reason or the other.

Fluid builds up on her lung that has to be drained, almost weekly.

The reason why I am fairly uninvolved is because I live far away from her. My father is very involved in her care, very hands on. He goes with her to her chemo sessions and he takes care of her afterwards. It has made her extremely ill.

I am flying out to be with them this weekend, so I will ask all the necessary questions so that I can start my education.

[LovesLife]

I am so sorry to hear about your mom and all that she has been through. It will be good for you to get a chance to spend some time with her this weekend and get some answers to some of your questions. I can't imagine how difficult it must be for you living far away.

I am sorry that you are finding yourself in the position of requiring this type of education - I truly am.

Linda

[ts]

Vortex,

Well, it is pretty easy to give you a very basic answer, and I hope I am not out of place doing so. From what you have written, your Mom likely has Stage IV cancer - assuming it is lung cancer, with metastases to bone and adrenal. It sounds like she may also have a pleural effusion. Wherever the cancer started is the primary diagnosis (not where it was first detected.)

The radiation probably was to relieve pain in her spine?

The chemo is a systemic therapy that is trying to kill the cancer cells that in her blood as well as the tumors. Most likely, it takes 5 hours to give chemo as they are also pushing fluids through her at the same time. There are a number of possible cocktails she could be receiving, so I won't guess. Some are more difficult than others as far as side effects.

You don't necessarily need to be the medically educated one here. Your physical presence will be her best medicine. No matter how she responds. Things have changed so much since my 57 year old Mom died from this. I'm 53 and living with it almost two years and doing pretty well. According to stats, I shouldn't be here - so around here, we shout "DON"T PAY ATTENTION TO STATS!" We all are individuals and no one, not even the doctors, know how long we can live with cancer. We have lots of long time survivors around here, and lots of caregivers who's services we can't do without.

Let us know what you need, how we can help. Best to you, and your Mom - and your Dad. He may need your support almost more than your Mom, but if he is like mine, he will be stoic and not show it. Believe me, he is hurting and may be operating on shear willpower himself. See if you can get him to take a break while you are home and make sure he has some help/support for the future, if you can.

[Joppette]

Vortex,

I agree with ts, even though it is difficult to give you an accurate diagnosis without knowing more. If it is primary lung cancer, than I'm also pretty sure it's stage IV. What that means in basic language is that the cancer has metastasized (spread) beyond the lung, and even beyond the lymph nodes, and is now in the bone, and elsewhere.

My Mom was stage IV, and it spread to her bones and brain. They gave her radiation to give her comfort from the seizures that the brain tumor caused. It's likely they are doing that to your Mom's bones for the same reason.

When you go home, try to assess how she is doing with pain. If she is in pain, you will see it on her face. Ask Dad what they are giving her for the pain. My Mom was in a lot of pain because of the mets to her bones. The doctor's were reluctant to give her the pain medicine she needed. Since she was stage IV, and given the term "terminal", I was able to call Hospice and get them involved. They went to war with the doctors and got her the pain medication she needed.

Pain options: Liquid morphine was a great solution for my Mom. But she needed more. So we got these pain patches, called Duragesic pain patches. These are applied to the body, and deliver pain medication 24 hours a day, and then the morphine was only used for "break through" pain.

I don't want to be this direct in an on line forum, but I feel like you are wanting to know what's real, and what can be done. So I'm taking a risk and sharing my experience for what it's worth. When you go home, do give Dad a break. You can use this time to spend with Mom and hear how she's really doing.

Best wishes.

Judy in MI

[Vortex]

Thanks from the bottom of my heart to each of you for your responses.

The weekend started out well.

My mom is currently in hospital and she has been for more than a week. She has been receiving blood transfusions because her blood count is very low. Her chest has been drained. Hopefully today the drain will be removed and there is a small chance she may go home, but I am not really holding my breath.

When I got to the hospital on Saturday morning she looked great (or at least as great as can be expected under the circumstances) and she was smiling and very happy that I was there. At about midday her oncologist arrived and injected some medicine into her chest that will hopefully sort out the plural effusion (see, I am learning stuff here...). This caused a bit of pain, so they gave her IM morphine as well, which made her sleepy. I spent the whole day with her at the hospital even though she was sleeping.

That night she became very nauseaus. Nausea has been plagueing her ever since Chemo started, it never seems to go away. I would almost go so far as to say it has been her most distressing side effect. It is not just for a few days after chemo, it carries on until one or two days before her next chemo starts.

Sunday the nausea was still very much present. I never saw her eat anything the whole time I was there. This has really worried me.

I have since established that it is indeed Stage IV. My dad is going to email me the chemo she is on as well as the other meds etc. I was blissfully under the impression that lung cancer is lung cancer. I did not know you get different types. I thought chemo was chemo, and I did not know you get different types.

The radiation treatment on her spine was a huge success it would seem. My mom is actually pain free as far as her spine is concerned, which is a blessing since the pain in her spine was totally unbearable to the point that she became immobile.

She is on oxygen 24/7 and has been for some time now.

I spent a lot of time with my dad as well, we spoke at length about our fears and our hopes and what has happened in the last 2 months. He is struggling, that is a given. I knew that from the start. He tries to maintain a cheerful front in front of my mom, but inside he is crying. He is tired and worried, but he was grateful that I was there.

Hospice has been great. They have been so supportive with providing some basic tools to make things a bit easier for my mom, such as a wheelchair. Counsellors have also been to visit both my parents.

Because of the side effects my mom has suffered following the chemo (extreme nausea, low blood count etc) the oncologist has decided to reduce the strength of the chemo for the next round. That should be towards the end of this week. It was due tomorrow, but my mom is really not well enough to tolerate it.

My mother is a strong woman. She is brave. She has endured much more in the last 2 months than I think I could in one lifetime. I am extremely proud of her.

What has really touched my heart is the unexpected kindness of people. From nursing staff at the hospital, to fellow church members, to total strangers, the outpouring of kindness, well wishes and practical help has been inspiring and uplifting. But the most inspiring and uplifting thing I have witnessed is my father's love for my mother. There is nothing he will not do for her. I am witnessing true love in motion.

Once again, thanks to everyone for the comments posted thus far.

[jaminkw]

I rarely miss an introductory post by a new member but it appears I did. I read things have moved along since you first posted. I am glad you were able to visit. It obviously made your Mom happy and I can only guess what a moral support it must have been to your father. My children are both hours away and my husband has been my caretaker and my rock thru my treatment of more than two years. Miracles happen in this cancer journey so don't count Mom out yet. I'm surprised they have not been able to deal with the nausea. They have some mega anti-nausea drugs today. Hopefully that will end soon so she can feel like eating again.

My best wishes for you and your family.

Judy in KW

[Joppette]

Vortex, well, you certainly did learn a lot in a short amount of time! The nausea thing stinks, but when I went through my chemo, I fought that as well. It was not strong enough to make me vomit, but I was just slightly nauseated all the time. So when food was brought to me, I'd just look at it with this frown on my face.

They finally put me on Promethazine, and that did help a lot. But food also tasted like metal to me, so even without the nausea, it tasted awful, so I did wind up losing 35 pounds, and I'm not a heavy person. I would force myself to eat, but obviously was not eating great.

I love how you ended your entry, about the kindness of strangers, and the love of your father. Very nice.

Judy in MI

[fillise]

Vortex,

I am late in welcoming you as well. It sounds like you know more about the situation now that you have visited. I'm also a long distance daughter to a mom with stage IV LC. It's really tough being away--I understand.

It sounds like it is understandably tough on your dad as well. Most hospice organizations offer care for the caregivers as well as the patient. You might check to see if they have support for your father. It sounds like he might need a safe place to vent his frustrations and fears and express his sadness without upsetting your mom.

Susan