Hello...I'm a newbie

[Jassen]

Hello,

My name is Jassen. My wife suggested that maybe I check one of these forums out since I have no real support through friends elsewhere.

On October 9th, I took my mother to the ER after she fell twice in the same day in my presence. A tumor was found on the left frontal lobe of my mother's brain (a biopsy was conducted). From there, a cat scan was done and a small nodule was found on her lung. She was released from the hospital after 6 days.

She was put on steroids and an anti-seizure medication as well as Prilosec. Five days later her primary care physician informed us that she had lung cancer. In the meantime, her energy was low and her balance was off. She also was experiencing more and more seizures.

A week later, she was scheduled to go to cancer care and a few days it was decided that she would begin radiation for 10 minutes 5x weekly and after 6 - 8 weeks she would beging chemotherapy for her lung.

My mother lives with me, my wife, and our daughter. I am experiencing lots of anger and rage. I feel very alone and understand my wife cannot shoulder my emotions. My father died in 2006. I have no siblings and I have no other family members to lean on. Two close friends have died in the last 3 years. I am 35 years old.

This is the beginning of the second week of radiation treatment and her symptoms are getting worse. She cannot walk very far due to seizures and her memory is getting worse. She also is complaining that her eyes are not adjusting at times.

The symptoms were so confusing. From our standpoint, it looked as if my mother was getting depressed. She began lacking energy and motivation. She insisted she was fine and sometimes complained of having "dizzy spells."

My mother is stage 4 and has been given about 12 months to live with treatment or 6 months without. It was devastating to get that information last Thursday and then watch my daughter and mother embrace and cry real tears of pain.

I am very close to my mother and my heart is broken. I cry a ton which is very unusual for me. Not sure how to deal with all of this.

Thanks for listening,

Jassen

[Donna G]

Hello Jassen, welcome. I am so glad you found this site. I am glad also they your Mom got diagnosed and is in treatment, It is rough, I know I have been there. I hope she responds well to the chemo and radiation. Please keep us posted on how she is doing. If you have any questions, fire ahead.

Donna G

[nikkala]

Hi Jassen,

So glad you chose to seek out support. It is not easy being a caregiver and this group can help you tremendously. In my moms experience with the brain mets radiation helped her symptoms of seizures, vision and confusion after about 7-8 weeks. I know how hard these symptoms are to deal with and feel like your mom is just falling apart. Please don't listen to any statistics as each person is an individual and noone can say when our time is up. Remember to take care of yourself thru all of this. You are NOT alone. You WILL have all the support you need here. Feel free to ask questions or just vent. The anger ,tears,rage, that is all normal as it should be. This is not fair to you or your mom and we understand that.

[eric byrne]

Hi Jassen,

A warm welcome to LCSC, Sorry to read about your situation,since I am not a resident on your side of the pond(Scotland) I am therefore at a severe disadvantage,in offering advice that would be relevent in alleviating your distress.I will describe the aid available here,it may well be available to you but under a different system.

My wifes mother came to live with us for over five years prior to her passing,during which time her mobility and mental faculties deteriorated until being transferred into hospital for her last few weeks,so I can understand the stress you and your family are trying to cope with.It may be true for all of you involved ,sometime in the future, some guilt may arise that you could have done things better for your mother,dont let this enter your mind for a minute,you are doing your best coping with the situation here and now.I can understand your feelings and your wifes,additionally you have lost some support from friends who have passed away.

In Scotland the first line of support,is your local council and GP to determine the level of care that your mother needs,in my case my mother-in-law was given a care assistant who visited five times a day to help her with her personal care,washing, dressing and companionship.In Scotland with your mothers medical condition,she would have the regular attendace of a Macmillan nurse appointed to look after her medical needs,also to provide councilling support for the family,the nurse also works with the local hospices,to arrange respite care periods,whereby your mother would go into the hospice for a short period of time,giving you a bit of rest and recouparation. I really think you have got to rely on some expert support to manage this situation,otherwise it could lead more serious consequences for the family harmony.I wish you and your family my best wishes in seeking out the appropriate help that is available and best suits your needs.God Bless.

[Jassen]

Thank you for your replies. I seriously appreciate you all taking time out of your day and thoughtfully replying to this very difficult circumstance.

Your stories are all amazing. It helps to read them and to see what you have been through. It also gives me some hope when I thought the hope well had run dry.

Jassen

[jaminkw]

Sorry to be coming in late Jassen. Like the others, I'm glad you found us and sorry you needed to. Understanding that you are close to your mother, I was struck by the pain you experienced watching her face the music with your daughter. My daughter would be the same. She would be devastated losing her father or me, but she would be most pained by the loss of us to her son. Grandparents are special people

We say here that people don't have an expiration date. That is true of your Mom. We hate it when doctors give time-line prognoses. THEY JUST DON"T KNOW! Remember that. Once the brain tumor is dealt with, you may see a market improvement. I'm understanding they've dx'd lung cancer. The cells can tell them that even tho there is only a nodule in the lung. The tumor in the brain is likely considered to have metasticized to the brain. I have 3B lung cancer with no tumor in my lung. The met was to my chest wall, not my brain but chemo has chased it out of the chest twice, this time into the abdominal wall. But I'm still doing treatment and living life three year since dx. Hang in there. Keep the hope and keep us posted.

Judy in KW

[Van55]

I'm also sorry to be late in welcoming you.

I was diagnosed with Adenocarcenoma of the lung back in March. On my first meeting with my oncologist he looked at me very seriously and advised that the mean survival time for people with my diagnosis is a year, meaning that 50% don't last a year. That was very distressing to my wife and me, of course.

I have since learned that the statistics are practically meaningless when it comes to individuals such as your mom and me. They should be ignored. Our survival time depends entirely on individual circumstances and our response to treatment.

I hope and pray for your mom, and I empathize with your distress over her condition. As her son and care-giver you must provide her with optimism, hope and support. Your grief over her diagnosis may be contagious. What she needs is hope and prayer, not grief and dispair.

It's funny that both my adult children wept when I told them of my diagnosis. It was I who comforted, consoled and reassured them. They didn't understand that "cancer" is a word, not a sentence. They've since become great sources of support for me.

[Jassen]

Today was a tough day for my mother. This is her second week receiving radiation treatment to her head. She has been increasingly lethargic. So much so, that tonight she went to bed at 8pm.

She has been sleeping on and off throughout the day and tonight I noticed she developed a cough. Sounds like a smoker's cough. She also is cannot remember things that occurred during the day and stated that her legs feel "funny." Are these symptoms normal?

It is hard to know the level of care needed day to day since it just seems to be getting increasingly difficult for her to function during the course of a day.

Thanks

Jassen

[ginnyde]

Jassen, it has been many years since my husband had radiation to his brain, but I remembe that it does cause many crazy side effects. Unforturnately, some will be long term but most will disappear once the radiation is over and has run its course. Radiation takes awhile to leave your system.

Hang in there. Be patient. Fight like h***.

[fillise]

Jassen,

I'm sorry to read about your mother's dx, but so glad you have found us. I've been where you are. The shock and pain at the new dx is normal. You've gotten good responses from others about the side effects of the radiation. The good thing is that many of the side effects are temporary. The fatigue is certainly one that should get better once the radiation is complete.

We are here for you. Not just for information about your mom, but to help you as well. Come here with any questions or just to vent. We understand.

Susan

[Jassen]

Yesterday I became concerned with the cough and her more labored breathing, so I called the cancer center. They could not get her in so they referred me to her primary care physician who called back late afternoon just after radiation and recommended that I take her to the ER.

So I took her to the ER which was overloaded due to a nurses strike at the other local ER. THe triage nurse checked her vitals and said they were "good". After waiting an hour in the waiting room and seeing how tired my mother was (in addition to the fact that there were so many ill people that could potentially infect her), I decided to take her home instead of waiting 3 - 4 hours to see a dr.

It ended up being a good call as everything ended up okay. I have never been through this and their are so many ups and downs. The radiation is kicking her *ss. She is beyond fatigued.

Today she fell and I had to pick her up.

The strength it takes when your heart is broken to function is incredible. I feel like I have the weight of the world on my shoulders. In addition to the increasingly more level of care of my mother, my wife and child are having to grieve and deal with this as well. I have noticed if I let anything really get to me, it effects the rest of them. It is soooo hard to maintain strength and not be able to really let things out. Sometimes I feel like I'm going to explode.

Jassen

[jaminkw]

Jassen, let it out. They can relate to you better if you show your feelings. If letting yours out encourages them to do the same, you will all be the better for it. Bottle it up and it can come out spontaneously in one huge discharge of emotion.

Sorry your Mom is having such a rough time. Just ride it out the best you can. It's difficult to sort out what symptoms are cancer and what side-effects of treatments. Her progress or well-being will probably be easier to assess once she's done with radiation.

Judy in KW

[recce101]

Jassen, go for a drive by yourself, roll up the windows and turn on the radio, then scream and curse and yell and say all the stuff you'd never want anyone else to hear. When you get home put on your running shoes and get rid of some of that tension physically. Then spend some time with your dog, or maybe a neighbor's dog if you don't have one. You must must must take care of yourself. Please keep this in mind:

FAA regulations require that, in the event cabin pressurization is lost, flight attendants don their own oxygen masks before attempting to assist passengers.

Brain radiation can be a real bear for many people, but the brain met is your mom's most immediate challenge, and that needs to be dealt with before the lung cancer can be systemically treated with chemo. And until we see how her cancer responds to chemo, there's no way to tell or even guess what course the disease will take. So I hope you can get that 6-to-12-months nonsense out of your head and instead rely on something like this quote from Dr. Jared Weiss, a lung cancer expert who has frequently posted on GRACE (Global Resource for Advancing Cancer Education - http://cancergrace.org):

The staging systems are designed and revised to predict average survival. I don’t use these statistics when counseling patients, because I don’t think that they really convey useful information. By the nature of an average, half of the patients do better than the average, and half do worse. Survival in lung cancer is extremely unpredictable and so variable that I think that in counseling an individual patient, these numbers lie more than convey meaningful information. Further, these statistics upset some patients.

My best wishes and Aloha,

Ned

[Jassen]

Hi just a quick update. My mother was taken to the ER this morning after she was awake but unreponsive to verbal questions. She looked very confused.

The ER Dr. seems to think it is possible thre radiation could be irritating the tumor resulting in increased swelling in the brain. The ER nurse told my uncle he should say what he had to say while he had a chance.

I am not ready to hear these types of things. In my mind, I want to believe that she will have some more enjoyable days ahead. Things are tough and my heart is heavy.

Thanks for all of your replies and support.

Jassen

[Joppette]

Hello Jassen,

I'm very late coming to the forum for this. I was out of town, so missed the posts. As you can tell, we understand what you are gong through, and it stinks, doesn't it? My Mom had the same DX as yours. We found it when she was having seizures, and they found the tumor in her brain. The hope would be that the radiation would give it a chance to shrink, so she can focus on the other things that need focus.

But unfortunately, it may not happen if the radiation is causing increased swelling. I'm so sorry you have to face this. All I can say is none of us is ever "ready" to face the end of life for a loved one. It's a sad time, and there isn't really much we can say to help in this situation. I just pray that she can get through this crisis, to find some more enjoyable days ahead.

Know that my heart goes out to you and I pray for peace for you and for your Mom.

Judy in MI

[fillise]

Jassen,

I'm sorry to hear of your mother's situation. Having recently been in your shoes I will tell you all you can do is all you can do. Ned's advice is good. Get away somewhere and scream, cry and let your emotions out. You have to take care of yourself in order to function for your mother and your family.

We are here for you when you need us.

Susan

[Jassen]

My mother finishes with radiation mid-week next week and then depending on what the neurologist see in the latest head scans, she will either be starting chemotherapy or having some procedure from the neurologist.

In the meantime, things are just bananas. Since I last updated, my mother was given another seizure medication and her steroids were increased to 6mg 4x daily. She is still very coherent but is sleeping most of the time. Her legs don't fuction correctly and she confuses her wording oftern.

The good news is that she likes to be informed and likes to be in control of things as much as possible. People keep discussing Power of Attorney and Wills and this and that. Trying to get things in order is very difficult when you are one of two primary caregivers and there are appointments everyday.

I wish I could go for a drive and scream or have time to punch my punching bag. There really is no time for my wife or I to vent. We are the only caretakers. We have been told that my mother will not be able to receive hospice until she is done therapy.

I am equally tired of people taking to me about my mother tapping out on treatment. It is my mother's choice. It's her body and she is able to communicate her desires. The ER Dr. talked with us about this and I later found out that my mother's chart was wrong at the hospital. It indicated she had congestive heart failure and diabetes amongst other things. This is not the case and I now wonder if she got the care she deserved. They were going to release her without having a Dr. speak to me and without a plan in place.

I am both mentally and physically exhausted. Like my mother, I will keep fighting. I just wish the coordination of services was better.

Thanks for reading my ramble,

Jassen

[Annette]

I'm sorry to have to meet you in this situation. Although I am the person that had cancer last year - I can certainly understand your problems as caregiver to your mother. It sounds like some of the people you turn to are helpful and others are not.

I know there are many caregivers who read this site and can speak to hospice not coming in while active "curative" treatment is being rendered - should your mom decide to stop treatment then you will be able to call them and have a little support during that time.

It sounds like you are doing the right things as far as caring for her. My mom has several breathing issues and usually when you go to an ER and tell them you can't breathe they try and triage you in first. If the wait looks too bad - go home and call and ambulance - patients they bring in generally get taken to the care area immediately.

So here's hoping that the radiation is successful in fighting the tumor and your mom can continue to fight the beast.

Annette

[fillise]

Jassen,

I understand as I have been there. It's an increadibly diccucult position to be in. Your mother is lucky to have both you and your wife advocating and caring for her. Stick to your guns about making sure her wishes are honored.

Check with hospice organizations in your area. Some will allow patients to be undergoing palliative treatment (e.g. treatment with the intent to lessen pain and/or improve the quality of life as opposed to curing the diease) while enrolled in hospice. It sure sounds like you and your wife could use the support provided by hospice.

Susan

[Jassen]

On Dec. 7th my mother was taken to the hospital after she fell and could not get her legs to move. She was very confused and could not add 5 + 1. This was due to a decrease in her steroids.

I was faced with many tough decsions this past week. Options to shunt her brain to drain excess fluid were put on the table. None of these things were going to improve her quality of life greatly and actually posed more risks.

The decisions fell upon me. I heard my mother tell the chaplain that she feels safe when I'm around. Many times over the last few weeks she has told me things were going to be alright. See, my mother is tough, and she is a warrior.

I made the decision to change the course of the treatment so that she doesn't have to suffer. The doctors at the time felt she should not be included in the discussion of the shunt because she was so confused and was happy and did not feel any pain. I feel guilty for having made decisions that effect her life without her knowledge. She trusts me.

I had to fight to get her insurance through the state. I told them that I would not have my mother released until she had insurance and that it would be very costly to leave her in the hospital for the next 10 days while they dragged there feet to make a decison. She got insured that afternoon.

I made the choice to bring her home with the help of Hospice. She was released on Friday night. Since then, she has become much more mobile as well as alert. Yesterday, she questioned me about when she was going to have to go for chemo. I then took the time to talk to her about the difficult choices I had had to make. She was not angry but as the reality set in, became extremely emotional. I asked her to forgive me, and told her I didn't want her to suffer.

Everytime I am away from home my anxiety level increases and I become extremely emotional. This is such a difficult process.

I own and operate The Bag And The Crow which is a horror T-shirt company. I am designing a shirt dedicated to my mother's courage and strength throughout this battle. This tee is for all of the people that have had to battle. A portion of proceeds will got to LUNGevity as I believe in its mission.

My heart is heavy,

Jassen

[fillise]

Jassen,

I am so sorry you are in this situation with your mother. It is never easy, but she is so lucky to have you to make sure she does not suffer. I've been where you are and it is not a good place to be. You just have to know you are making the best decisions you can with the information you have. That is all you can do. I know it doesn't feel like it is enough, but for your mom it is everything. She knows you love her and want the best for her.

Susan

[harper36]

'm sorry to have to meet you in this situation.Although I am the person that had cancer last year - I can certainly understand your problems as caregiver to your mother. It sounds like some of the people you turn to are helpful and others are not.

I know there are many caregivers who read this site and can speak to hospice not coming in while active "curative" treatment is being rendered - should your mom decide to stop treatment then you will be able to call them and have a little support during that time.

It sounds like you are doing the right things as far as caring for her. My mom has several breathing issues and usually when you go to an ER and tell them you can't breathe they try and triage you in first. If the wait looks too bad - go home and call and ambulance - patients they bring in generally get taken to the care area immediately.

So here's hoping that the radiation is successful in fighting the tumor and your mom can continue to fight the beast.

[Jassen]

Hello everyone,

Just wanted to provide an update since I haven't posted anything in quite awhile.

First, my mother is still battling!

30 days is what the doctor's said in December. Hmmmmmm.

Here is my up-to-date story: http://www.thebagandthecrow.com/2011/03/15/crowmother-help-end-lung-cancer/

I am still very angry but have been channeling my anger into this: http://www.thebagandthecrow.com/2011/03/22/preorder-crowmother-help-end-lung-cancer-enter-to-win-rare-items-from-jack-ketchum-zach-mccain/

This one's for all of YOU!

I know it's a tad dark for most people but if you could spread the word it would be great! Great cause!!

Jassen