Linking you to resources and support in the lung cancer community!
Hi all ,Have been following with great interest all the discussions on this wonderful site.My mother who is 87 years old ,has never smoked, or done anything significant to prejudice her health ,Walked 6km a day and swam 1km a day until 2 years ago Last year in March she was diagnosed with Asbestosis from exposure almost 60 years ago . This year in January she was confirmed with Mesothelioma .From March until February the fluid collecting in the plural cavity was being drained every 2- 3 Weeks and in Jan it was only 5days between the last two drains .The amount of fluid were never less than 1 Litre.After the cancer diagnosis ,it seemed that the progression was fairly rapid ,due to the protein generated by the cancer ,the liquid was encapsulated making it nigh impossible to drain.The decision was made to put her onto Alimta as a single drug treatment ,the treatment is pallitive as opposed to curative .The results in two treatments has been significant ,to say the least.The fluid has in the main dissipated and the cancer has not grown at all.The first treatment ,She was in hospital for ten days due to complications ,Developed terrible sores in her mouth ,nose and lips and didn,t eat for about 10 days .This time I started treating with neostatin on the day of the treatment and we avoided the sores in her mouth ,they were limited to her nose and her lips (but only appeared about 6 days after treatment) the major issue that I need help with is the extreme tiredness and complete lack of appetite . it lasted this time for 13 days,giving her only 7 days to next treatment .Any bright Ideas out there? also the leg aching had been significant and her feet both really painfull and stiff .If I could just get an extra few days of being O.K. it would really help.She wants to live until Christmas !!!Its a scarey Journey for us all ,she is 87 and has had a good life,its just that i would like to help her have some quality in the time that she has left
I'm sorry that you haven't yet gotten any responses to your post. I know you posted a week ago. How is she doing now?
It sounds like your question is more about alimta side effects than her mesothelioma. I hope you don't mind, but I tweaked your header a bit so more people might see it. Not many folks here (if any) with meso, but some with alimta as treatment It's hard when it comes to treatment of older patients because doctors just don't know how they will respond to the drugs because we start metabolizing things differently when we get older. I'm glad you got the sores under control. Extreme tiredness and appetite problems are common with chemo. As far as appetite goes, have you tried meal replacement shakes like Boost and Ensure? Or even homemade shakes that might soothe the mouth sores too? Little meals throughout the day sometimes help. Hopefully others will chime in. The tiredness may be harder to deal with.
Hi Amy .Thank-you so much ,both for your reply and for tweaking my header.I am trying Ensure To be honest, I am quite glad, that it took a while for me to get replies .I needed to reflect on my fears and my actual issues .This journey is, I am sure, quite an isolating and scarey experience for everyone both the person with the cancer and the caregivers.I have realised that fear, and perhaps loneliness are my biggest problems.The other thing is that I am the" fixer" in the family, no weakness ,no tears, just get on and make it O.K..Well,Well,can't make it go away, Death is a reality.I have had to have a good hard look at myself,I have realised that IF I can get my mum to eat, IF I stop the scarey weight loss,IF I can stop the sores in her mouth ,If I can stop the painful legs ,THEN I am back in control.Ithink that I am beginning to let go .I am loving her, rubbing her legs, telling her she can eat whatever she wants,Telling her it's ok to sleep as much as she wants .I threw away the scale,I wrap her in wonderful soft cuddly blankets,to keep her frail little body warm.I have given my control away and I am just walking the journey. So greatful that there is no pain , so greatful for the time I have with her, just being. not doing .I can see that she is becoming more relaxed and accepting ,she smiles alot .Sometimes we talk, Sometimes I just stroke her and hold her hand.She looks so serene.This journey is mine and hers ,I am learning so much about myself,I am learning to let go and let God.Thank you so much for your reply ,thank you for touching me when I so needed to be touched.Please stay in touch ' its so wonderful to know that complete strangers hold out their hands and say I care Thank-you
I was really touched when I read the last bit that you wrote: "...it's just that I would like to help her have some quality in the time she has left." Ever since my mother died, I have regreted not having been just that much more patient with her, that much less involved with myself, not tried harder--gone all out-- to give her "quality," especially since that's what she did for me all her life. I wasn't cruel and heartless by any means, but I can't help but feel I let her down.
I guess what I'm saying is that you are a good person to care for your mother as much as you do. I wish you luck and her the quality I am sure you can provide her with.
Thank-you so much for your reply , I know that you didn't let your mother down ,but I do know what you are saying.Oftentimes our lives are so busy,that we get sidelined with" the doing" as opposed to' the being' . You know in your heart that you did the best that you could,based on where you were in your own jouney at that time. I am so blessed to have this time .thank-you so much for you wonderful words of encouragement .I shed many tears when I read it .Thank you for reaching out to me
Try not to keep beating yourself up. You did the best you could, you were there, you helped & she appreciated it. It's really tough to be a caregiver. You probably have your own family & maybe work to deal with & then cancer takes over your life. People don't feel good & get cranky & you get worn out - it happens. Remember what you "did do" and the love you shared & know in your heart it meant a lot to your mom :)
I'm sorry I didn't reply sooner, I'm one of the moderators here. I was out of the country all week. Your post is really touching. We are in similar positions with similar feelings. My mom is 65, so younger, but the journey sounds similar. My mom was on Alimta for 2 years. She had the same symptoms as your mom- feeling very tired, some lack of appetite (although not always), aching legs. Plus diarrhea. Her schedule was usually she'd feel bad 5-7 days after, chemo, be really sick for a week, then an ok week, then a good week. Then start all over. She got really worn down so after 2 years, we took a break for 7 months. She started back 2 weeks ago, and she has not felt good since. I don't know if it's just her body getting back used to the Alimta, or what, but I agree with you, 1 good week out of a month isn't much quality.
I have struggled so very much with fighting- IF we can stop the spread, IF she can tolerate the chemo, IF IF IF then things will be ok. During this last year, I have stopped fighting as much, but I still do in my mind. But at least I am now fully present when I'm with her, enjoying her. I'm so grateful to have this time with her. We talk, I put lotion on her legs, I rub her head. I lay in the bed with her and hold her hand until she falls asleep. The things you do for your mom are so touching, it just reminded me of my mom and how vulnerable she is. But one good thing about all this is think of all the loving you are doing, not just internally but externally with your mom, and really soaking her in and appreciating her. So many people don't get the chance to really care for someone that way, to show them that kind of love. You've reminded me that I need to continue letting go, to "walk the journey." Thank you. Hang in there, I'll be thinking of you.
Thank-you so much for your reply,I smiled this morning when I read your post.We sound so alike,even though we live on opposite sides of the world.You say that you were out of the country ,I don't even know which country ,however I assume America. I live in a smallish City down at the coast in South Africa.What made me smile is that I had become very philosophical about letting go of the control,two days later, l had taken it back , very difficult not to revert to type on any journey!!!!.Your mum is 65,I turn 65 this year ,I really must say I admire you.I cannot envisage my daughter, as wonderful as she is,taking the role of caregiver,she is far to busy trying to make "her mark on the world".I diversify , the reason that I went back into the control mode ,is the Doctors, who as wonderful as they are,are just too dam busy to stop and think --- and consolidate.My mum became very ill on Tuesday,high fever couldn't breathe, and she was very grey.I took her into the emergency facility where they diagnosed pnuemonia and hospitalized her.During the many tests they discovered a clot in her heart,Hence the breathlessness and extreme tiredness. I feel sooo- frustrated ,here we are to and fro to the doctor and no one picks it up.We have the Oncologist ,who sees her once every three weeks ,when he does the blood test and administers the Alimta.The Pnuemologist ,who sees her when in hospital.The heart specialist ,who sees her when in hospital (even though her heart is fibrilating,and her pulse is very high.The G.P. who is very kind and caring, just sends her home with more medication, every time I take her in for a visit.Then there is me ,who finally decides to "let go"only to discover that the reason for the extreme tiredness,is not the alimta ,its the heart.How do we manage this process.I know she is dying ,but there is so much carelessness .As an add on medication that really helps the aching legs is Pexola ,given at about 6.00pm. and then at between 8-9pm ,two ordinary pain tablets containing paracetemol.I also find that it helps to soak the feet in hot water just before bed and then put on bed socks .
I'm sorry to hear your mom was so ill. On top of everything, now you have to worry about her heart. I agree, you can't totally relinquish control because there are so many doctors and they're so busy and so many medications, someone (YOU) has to steer the boat. It's a difficult balance to attain. I probably am close to your daughter's age and I was just getting started in my own life when my mom got sick. I gave up "trying to make my mark in the world". At the time, I had to. Your daughter would the same if she had to. Now, I realize, although I wouldn't trade this time with my mom for anything, I do need something "just for me". So, I'm still working on achieving that balance. Everyone has different struggles during their journey with cancer. Cancer just kind of takes over your whole life, doesn't it?
I hope your mom is feeling better and isn't in any pain. It's almost surreal to know someone is dying and still have to balance day-to-day life. Don't be too hard on yourself for not being able to completely let go. You're doing the best you can. I'm sure your mother appreciates you so much. I'll be thinking of you-
Thank you so much for your reassurance,you are so right ,it is almost surreal and the keeping balance is really difficult ,I really try to carry on as normal,but the difficulty is you don't know wether you will have tomorrow.My Mum is luckily not in pain and for that I count my blessings. we have good days and bad days.The good days we celebrate.thank-you for your imput .I do admire you, your journey has been so much longer than mine,and it is a tough journey.I hold you in my thoughts.Regards Pat
Thanks for your kind words. I know all too well about the good days and the bad ones. Every day you never know which you're going to have. But I do the same as you, really appreciate the good ones when you have one. That's a lesson a lot of people never get, so that's something to be thankful for. I will keep you in my thoughts as well. Please keep us posted on how things are going!
Thank you so much- a hand in a dark night means a touch that your soul will hold onto for tommow
Hi all you brave and wonderful people ,I have not posted since April 4th,but have often come onto the site to read all the updates and grab a handful of courage from you all .My Mum died on Sunday June 10th at 8.30pm .The journey is over for her .I am so grateful that I was able to travel this road with her,I learnt so much about her and myself .I learnt much about caring ,touching ,loving and how much all of these things help, both in living and in dying,.We were supported by so many kind people who gave of themselves unstintingly .My faith, in the nature of my fellow travellers, on this journey that we call life,has been increased a thousandfold.I am greatful that, I was given the honour of walking the woman who gave me life, to the door that signifyed the end of her life on earth.She died without pain ,in her own bed ,surrounded by love .Goodbye Mum ,fly free