Summer

Karen, I am so sorry to hear about your loss. My prayers are with you, Faith and all your loved ones.

Lenda, I'm so sorry to hear about your struggle. I understand the resentment you feel towards the doctors, and hope that eventually there'll be resolution and closure. I did not trust my partner's doctor, felt that he had given up from day one. Much as I tried I could not convince my partner to get a second opinion. He had responded well to treatment initially, and when the cancer spread, in the 6th month, it was already too late to pursue other options. It's hard to live with this. I lost my partner, best friend, my everything, to lung cancer only one month ago. It's all very fresh, and much as I would like, I know that there is no quick fix and that as time goes on the hurt will still be there. I don't think there's anything wrong with you. The loss of a mate must be one of the most difficult of losses, other than that of a child. It seems such a large part of me is no more. I see a mental health professional every two weeks, don't know how I'd cope otherwise. Often, I don't know what there is left to live for, yet, I'm healthy, suicide is not an option, and I have to trust that since I'm still here I'm supposed to be, for something. Lenda, I'm sorry for the hurt you're feeling. Have you considered contacting a social worker, or psychologist/psychiatrist? Any outlet where it is safe for you to talk. It is too hard to do this on our own. I'm glad you found this board, too. Much love to you. Dorothee

Betty, I'm so sorry about this news. Wishing you comfort and peace as you continue on your road. Gentle hugs to you.

Bet, your mother has a beautiful spirit. Thanks for sharing her update with us and please tell her hi for me. I like the prayer - will incorporate it into the beginning of my day. What a great Mom you have and what a wonderful daughter you are to her. Hugs to you both.

Hi Beth, I agree with Don. . Like you, I worked while taking care of E., forever reminding him to drink his water, eat, either via phone or at home. I was so busy being the researcher, cheerleader, caretaker, that I did not take time to stop when he needed a hug, caretaking gave me a means to hide from my fears. I had many symptoms of burnout - wasn't eating, put off medical appointments, my whole focus was this disease and how we might beat it. There were times when I was angry at my partner for presenting so "well" on the phone to his family, when all I saw were the pain, the fatigue, the side effects from treatments. Later, I realized that I needed an outlet. I let friends help me. They would bring dinner, or sit with my partner so I could go out with a friend. I went to see a therapist. My best friend is my confidante and I was able to (and still do) vent freely. Please find time for yourself, by any means possible. It is important to have moments of joy, and time out from caregiving.

Shirley, I'm so sorry you lost your Mom.

I have read your replies many times now, and find comfort each time. Thank you. I know that after time it gets easier, I've seen it in people I know who have lost a loved one. Wish I could take a shortcut. Instead, each little reminder, the firsts, the memories, cupboards full of health food, left over supplements, clothes, smells, make for many moments of sadness each day. The memories feel painful rather than joyful; I miss him. The memorial service was yesterday. It was a wonderful day filled with love and appreciation for the many beautiful memories all of us will always have. We were able to fulfill a special wish he had and added other touches that he would have liked - and perhaps saw. Once home, I cried most of the night. Seems he's really gone now. Up to yesterday he was still there in all the arrangement-making. I am dreading the time that comes now. Much to do, and I can't afford to procrastinate about it - for finanical reasons my son and I will need to find a smaller home, and I will return to work next month. One good thing: Our cat has been lavishing extra attention on me, bless his little kitty heart.

I'm not doing very well. My partner died last Wednesday and every day since then I've been trying to understand that he's gone. I go through the motions, somehow get through the day but feel that nothing I do has any purpose anymore. My "special" song played on the radio at the exact time of his death, as I was driving to be with him, and I remember feeling an overwhelming sense of love for him. I had told him about this song and the way it makes me think of him several months ago. The song is about love eternal. His daughter was with him when he died, and although I initially was devastated over not being there, I now realize that I would not have had the experience I had in the car, as he had been sleeping for most of those last few days and passed quietly in his sleep. Could it have been a sign? I so hope that there is some connection that remains... is there? I have read about those comforting signs that sometimes come.... so I went to bed cradling the cap he'd been wearing to keep warm, hoping to feel him close, hoping for a comforting dream, and had a nightmare instead, aliens coming after me... The sadness is so all-consuming; I'm afraid that nothing will ever be right again.

My best friend, lover, the most wonderful man I've known, has left us; he passed away peacefully in his sleep this evening. We only had 4 years together, but these were the most beautiful of my life. The past few weeks were filled with pain at times, but also with gentle, loving moments that I'll treasure forever. I am so grateful to the staff at Hospice, who were able to ease his pain and make him comfortable. And I appreciate all the support we've received here from you. Love to all of you.

thanks for the prayers and for checking on me. My partner was moved to inpatient Hospice on 3/16. Treatment was not an option in his condition. Much as I wanted to bring him home, we would not be able to care for him as well as the staff at hospice, and I was urged to not cheat myself of quality time with him. The staff are doing a wonderful job in responding quickly by raising the rate of pain medicine when his pain increases. He is confused and disoriented most of the time and does not understand the situation. Nevertheless I've been able to have some very special time with him and spend most of my time there with him. There is a daybed in the room that I sleep on and I treasure the time I have with him. Sometimes I second guess the decision we made - should I have pushed for treatment, even if it might not have been successful or could have killed him? Better to go quickly than to linger, in pain? Difficult to think about, and I try hard not to go there, but the thoughts come.... So I take things one day at a time, sometimes a minute at a time, and put my trust in God and the universe, that whatever happens, I will get through this. I'm home this evening, glad to have the time to write, and read a little. I feel connected here, and writing gives me some comfort. I'm sending prayers to all of you here. Karen - sorry to read about the struggles with the platelets, praying for you and Dave and those platelets! And Brian and Pat - thanks for your prayers, and I'm sending mine for a quick recovery from Brian's 2nd chemo treatment. If it is making him sick, it's also hurting the cancer cells big time! Love to you.

Thank you...... I've not had time for an update. We had to take my partner to the hospital on Monday. He was unable to move his legs and had increasing difficulty coordinating his hand movements. The pain became unbearable, shoulders, back, chest, abdomen, hips... he's hurting everywhere. An MRI found indication of something wrong with the meninges that covers the spinal cord. Doc suspects the spinal fluid has cancer cells. We looked at possible treatment options but none are possible in his condition, nor are they likely to have much effect considering the spread of the disease. He has decided to go with Hospice. The past few days have been so sad. And a shock to us, as we've been fighting this beast with all we had and thought we were making headway. Within one week his condition totally changed, and every day I see him hurting more, and slipping away a little more. Thanks for all the support you've extended to us. I do believe this disease will one day be overcome, or at least managed, like diabetes or hypertension. There is all kinds of new, innovative research out there, it's only a matter of time until an effective treatment is found. Love and prayers to all of you who fight the good fight. Summer

thanks, all of you, for your encouraging words. And Don, I appreciate you pointing out the other possibility .... right now things are not looking good. We had to go back to the ER today, my partner had multiple problems - bladder not working and also tremor, difficulty coordinating movements of his hands and walking, weakness. Bloodwork looked ok, catheter was a relief, but no clue as to what is causing all of this. The slight confusion and motor function issues frighen me the most. It is probably more obvious to us who know him well. They did do a CT of the brain but no obvious issues were found, and brain mets don't show up on it. I will ask again about that MRI when I talk to the oncologist on Monday. I had pushed for it since he had WBR in October but my partner did not want to pursue it - his Doc said why do it, he's already had the max radiation with WBR. Hmmm... I had asked the radiation onc (who is with a different health system as our HMO outsources all radiation tx) prior to his treatment whether there would be additional radiation options after WBR and he had said yes, there are other things we can do. I assume gamma knife. But I've not been able to get my partner back to the radiation onc for a follow up. My partner wants to trust the process, and he trusts his oncologist. It is frustrating, but - what is, is. We will look at where we go from here. I don't know if he is well enough to receive chemo or radiation treatment as things are now. At this point he is very ill and I'm fearful things will get worse. This is so sad, and my heart is breaking, seeing him suffer. He was doing so well just a few weeks ago.... More than I had intended to say, but it feels good to write down my thoughts here; all of you know what I am talking about. Thanks for being here.

thanks, all of you, for your encouraging words. And Don, I appreciate you pointing out the other possibility .... right now things are not looking good. We had to go back to the ER today, my partner had multiple problems - bladder not working and also tremor, difficulty coordinating movements of his hands and walking, weakness. Bloodwork looked ok, catheter was a relief, but no clue as to what is causing all of this. The slight confusion and motor function issues frighen me the most. It is probably more obvious to us who know him well. They did do a CT of the brain but no obvious issues were found, and brain mets don't show up on it. I will ask again about that MRI when I talk to the oncologist on Monday. I had pushed for it since he had WBR in October but my partner did not want to pursue it - his Doc said why do it, he's already had the max radiation with WBR. Hmmm... I had asked the radiation onc (who is with a different health system as our HMO outsources all radiation tx) prior to his treatment whether there would be additional radiation options after WBR and he had said yes, there are other things we can do. I assume gamma knife. But I've not been able to get my partner back to the radiation onc for a follow up. My partner wants to trust the process, and he trusts his oncologist. It is frustrating, but - what is, is. We will look at where we go from here. I don't know if he is well enough to receive chemo or radiation treatment as things are now. At this point he is very ill and I'm fearful things will get worse. This is so sad, and my heart is breaking, seeing him suffer. He was doing so well just a few weeks ago.... This turned into a much longer post than I had intended, but it feels good to write down my thoughts; all of you know what I am talking about. Thanks for being here.

Beth, Sending a prayer right now. I hope you're resting comfortably and on your way to better days.

After a week of severe stomach cramps and back/shoulder pain, and a visit to the ER on Tuesday, our Oncologist told us today that my S.O.'s CT scan showed cancer in his adrenal glands and abdomen. We had just started 2nd line chemo (first treatment of Topotecan 10 days ago) and thought the abdominal issues were side effects of the chemo and/or pain meds (they still might be, hard to tell). Doc informed us that we may want to consider hospice at this point. He agrees that it's too early to tell if this 2nd line chemo is effective, and will schedule more if we want it (we do and have scheduled the next tx), but he seemed to think that quality of life is more important. He says radiation tx is not an option for the mets as it would cause too much damage. He says we may be reaching the end of effective options here. I feel scared and confused. Feels like all the positive thoughts have gone out the window. Can we still hope? Should we continue the fight? We both want to, though Doc was quite clear about the poor prognosis at this point, and we are preparing for the worst. Prayers are really really appreciated right now....

Lori, my heart goes out to you. Wishing you and your family peace and comfort.

Karen, the Duragesic (Fentanyl) patch seems to work well for my partner. It lasts 3 days, makes it easy. For breakthrough pain he uses oxycodone. Constipation has been a problem and he tries to go without whenever possible. I had bought one of those digital pill boxes with 8 compartments so that we could use it for all the supplements and meds - trouble is, the compartments are so small that we can't fit them all, AND.... we had set the reminder alarm and now can't figure out how to shut it off!! For some reason it was going off every hour... we finally took the batteries out and I use it for my vitamins. I'll be heading back to the store for another, bigger, quieter one! Hope you'll find the good balance with the meds. I think Don is right, it's a matter of adjusting the dose until it works. Or, changing the type of med if there's problems. Good luck.

Lori, I'm so sorry - this must be really difficult for you. My mother has alzheimer's and we feel we've lost her also. The things she enjoyed most on a daily basis - her walks in the forest twice a day, pretty clothes, and her beloved dog - are gone forever, and she doesn't know that she's missing them. Perhaps it's harder on us who know than it is on the person who has "lost" comprehension. I feel for you. Hang in there. I'm glad you're father is not in pain. I'm sending a special prayer over to you and your family.

I believe that wanting to fight this disease with everything we have and having goals, dreams, to work towards help us in our battle. You seem to have both going for you, and it is good that the cancer was caught in limited stage. Perhaps there was a reason why your dream trip initially did not turn out the way you thought it would. I don't see that you failed; perhaps then was not the time for it, and perhaps this is the better time, with the knowledge you now have. I'm glad you've joined this group, I myself have joined only recently, and am grateful to the many wonderful people here that share their experience, strength and hope. My partner was diagnosed at an extensive stage and presented with a poor prognosis, nevertheless, the statistics are the middle numbers and there are long term survivors. Each case is very individual as I've been told often. Best of luck to you!

Best wishes for a speedy delivery; the less you think about "is it time yet?" the quicker it will come - ha! - easier said than done, I know.... All the best, Val, and I say she'll be 9 lbs 2 ounces.

Betty, I want to add my prayers to the others. My partner lost lots of weight during his first set of chemo, and the day when things started to get better was so special! So I'm sending a little prayer your way for that day to get there soon.

Like Addie suggested I applied some positive imagery, for me it was Space invaders. I blasted huge holes into the cancer until I saw the solid rec bricks (normal cells) behind the bad ones.... Doc had us stop Procrit as the earlier anemia is now gone, but I'm wondering if we should not consider resuming, knowing that Topotecan depletes both red and white cells. We'll ask about Neulasta also - thanks.

Thanks Teresa, We're switching to a new chemo drug and I'm frantically researching all I can find to get through the upcoming treatments... thanks for passing this on.

Hi Addie, Just what I needed today - thank you! My partner will be starting Topo tomorrow. We are firm believers in positive thoughts, and will be visualizing Topo kicking cancerbutt too! Glad to hear that round one went well, and sending positive thoughts to you for good results.

So here I was posting my happy Newcomer's post just the other day, reporting how well things were going. My partner was to have this 6th chemo of Carbo/VP16 this week, but at today's appointment Doc reported that the cancer appears to be on the move - increased in size in the left lung and moving into the right lung. We had an inkling something was going on as the shoulder pain came back in the last few days and spread into his back. He will have a bone scan on Monday. We're moving on to Topotecan. I'd like to hear what others' experience with this drug might have been. My partner has had one cycle (and a bad experience) of CAV, the same class of drug but Topo is supposed to be easier to tolerate? Our oncologist told us that it wipes out the white blood cells; I'm worried, and would appreciate any input.