I was just wondering how things are going for you and dh. I know that what ya'll are going through is very hard. Just wanted you to know that we are here for you if you need us. dee

Thank you for the thoughts. Things here are tough right now. Brian still isn't eating. Last week the doctor mentioned trying one of the trials. This chemotherapy treatment doesn't seem to be working. He hasn't lost as much weight as I thought he did but he is losing it quickly. He seems terrified. He started talking a mile a minute. The doctor agreed to another treatment and is doing a scan next week.
Sometimes it feels like we are starting from day one. He is so frustrated and I am getting to a point of frustration because there isn't anything I can do to help.
I sit here in the evening wondering what I can do as he sleeps on and off at the couch.
Waiting is difficult for him. Now he tells me he just wants something to happen. Whether it is to get worse or better. He is tired of feeling the way he does.
I hope everything is well with all of you. I do try to keep up to the message board but I sometimes I feel like I am doing nothing but complaining so I don't post.
Thanks for the thoughts.
jelz

Jelz, please don't think you are complaining all the time. You are going through an incredibly difficult time and it is good to vent sometimes. We understand and if it helps you to express your fears and frustrations, please do so. That is what the board is for.

I can imagine how hard this is for Brian too....to know the treatment is not working and wondering what will happen next. It is what we all fear. Just be there for him. Take this time to share memories and emotions. But also look after yourself. Take a break when you need to. Loving someone who is sick is very exhausting and you need to nurture yourself too.

Keep us posted and don't be afraid to say whatever is on your mind.

Love,

Hi Jelz,

It is good to hear from you. Like Ali said, please post anytime and anything you need to. You and Brian are going through a really tough time and if we can be of help to you, please let us know because that is what we are here for. I am NOT saying that this is the end for Brian, there are still clinical trials that he can do, but when we knew that there was nothing else that could be done for Richard I didn't want to post for fear of scaring and depressing everyone and Ali, Bossan, Cancerdad and many others encouraged me to talk about what was going on, letting them help me get through it and it helped so much. What I am trying to say is you can say anything, even vent (a lot) and there is nothing you can say that will make us want you not to post.

It seemed like everytime we had to endure something different it was like starting over. The constant ups and downs were almost unbearable at times and I, like you, would sit and wonder what I could do to really help him. In reality, you are doing everything you can and doing everything right....you are with him 100%. When all is said and done that is all that really matters. You ARE helping him get through this.

Try to take care of yourself and spend just a little time just for you. Take a walk, go shopping or a long bubble bath. This regenerates you and you are better able to cope. dee

Hello everyone,

I wanted to update to let everyone know what is going on. Brian is still the same. Not eating and not getting much liquid down. He continues to lose weight. He is in okay spirits. The chemo still doesn't seem to be doing much. We are still hoping and waiting. The waiting is the worse part right now. Brian is to the point where he just wants something to happen, good or bad. That frustrates me because it feels like he is giving up. I don't say alot about it because I will never know how much pain he is in. I have to respect his wishes. Maybe the trial will help ease his pain some.
I feel bad because when he first got sick I was in the middle of a career change. I put it one hold when he got his diagnosis. I continued to work the old job for 15 months but decided in march to continue on and get back to it. Now I have given up my job to attempt a new commission paying job. This has now made him upset and worried that we won't be able to pay the bills. I have done okay so far but now he has me wondering if I made a mistake. Maybe I should have waited until we see how he is. The extra stress is not good for him.
I want to do what is best for him ...but I am not sure my own santity will take it.
Again a change of subject, the food is not able to go down, the milkshakes are too thick and bloating him, the ensure is sickening after so long, gatorade only goes so far. They are not able to get a feeding tube in because there are so many tumours. Please if you have any suggestions as to what I may be able to try, please let me know. Seeing someone starving to death, literally, is so sad. Any suggestions would be appreciated.
Jelz

What a difficult time you are having jelz! I think that you have to create a balance when making decisions that affect the two of you. On the one hand, you do not want to cause Brian more stress but, at the same time, you need to be doing something that you like and want to do, career wise. You have to look after yourself as well as looking after Brian. It is so awful that so many of us have to worry about finances when going through serious or chronic illness. But it is a reality.

As to foods Brian might be able to tolerate, I am not sure. What about vegetable juices, even if you have to dilute them with water to help their smooth passage. My heart goes out to you while you find ways to cope with the present situation. I hope you have good support from family and friends.

Love,

Jelz, I am so sorry for all you are both going through. On the subject of food the vegetable juices would be a good idea. Can Brian tolerate anything cold? I bought an ice crusher at Walmart and started making slushes out of anything I could find... vegetable juice, fruit juice, gatorade or whatever. Boost puts out a juice that has a lot of potassium, protien etc in it. It is called Breeze. I had a hard time finding it but finally found a store that would order it for me. Also, I fed Richard some baby food and it seemed to help some. Some of it he actually liked. It was just a guessing game and he wasn't hungry but I just couldn't stand him not having something.

I know how frustrating it is when they get to the point they want something to happen, regardless of what it is. Luckily I became good friends with one of his chemo nurses and she was able to walk me through a lot of it. She said that it is common for a patient to finally come to terms with what is going on in their bodies and they aren't scared anymore. She also stressed that it wasn't because they were ready to leave us it was because they accepted what was coming and were at peace with it. I had promised Richard from day one that if there came a time when enough was enough I wouldn't fight him on it. I would honor whatever decision he made. The last day in the hospital when the doctor said there was nothing else that could be done I asked him if he was ready to come home and he said yes, so we were on our way home within the hour. Hospice was at the house waiting for us and she had already ordered a hospital bed and everything we would need. That next week was the worse I had ever experienced, but in a way the most peaceful for Richard.

I know that you don't want to stress Brian out but like Ali said you have to have something in your life that you like and want to do. You can't take care of Brian if you are dissatisfied with your job and stressed out from it. You DESERVE something that gives you pleasure. Please don't feel bad because of this. I noticed when Richard would get upset about something or worried by something it was usually because he felt like he was not helping out like he should. I learned not to take it personally and to assure him that things were going smoothly as far as our day to day living (even tho at times they weren't). Even tho Brian is experiencing the pain and illness you are going through it right along with him. You will loose your sanity if you don't have some outlet just for you. So, enjoy your job because it is ok to still enjoy something.

I am sorry that this is kind of rambling on. Be gentle with yourself and please let us know how we can help. Ali can be so much help because she is dealing with both sides, caregiver and patient. I will try to help as much as I can. Lots of love and prayers. dee