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Mesothelioma

Em
Posts: 36
Joined: Jul 2009

Why are they not more comments on this cancer? It is a horrific cancer, yet few write about it. No cancer is good, but mesothelioma is really aggresive, we need more support and comments on this topic. Merlin Olsen just died of mesothelioma last week.

Emily

augigi
Posts: 89
Joined: Dec 2009

My mum has malignant pleural mesothelioma. She was diagnosed late March 2009 after waking very SOB and needing fluid tapped from her lung. It really is a horrible disease, so few treatment options. I feel lucky that I've had mum as long as I have, and been able to take off work for months to care for her and spend time together. She has had 9 rounds of chemo with carboplatin/alimta and just starting to make her sick the last session. I fear soon the decision will come as to quantity v quality of life if the chemo effects continue to worsen. She is currently on home oxygen as required, and has a lot of pain from the lung being squished by tumor. The oxycontin, oxycodone, and particularly the liquid morphine works well so far.. the hardest thing has been having to be bossed around by her daughter (me!) and losing control as she can do less things without pain/shortness of breath.

Her meso was due to a lot of asbestos in the hospital where she did her nursing training 40 years ago.. so heartbreaking that your choice of career can inadvertently kill you. I know my mum will never dance at my wedding or hold any children I may have, and that is hard to accept. We have had time to deal with it a little though, which I guess is a blessing.

Em
Posts: 36
Joined: Jul 2009

Augigi,

I know just what you are going through and writing about. How old is your mother? My Jim is 67 and was diagnoised last April 2009. He participated in a clinicial trial at NIH in Bethesda, MD and did quite well. But unfortunately meso has reared it's ugly head again and he is now having Gemzar and Carboplatin for chemo here in Carlisle, Pa. When at NIH with the trial drug he was given Alimta and Cisplatin. We do not know where he was exposed to this, but most likley in the military. We pray each and every day for a cure and soon for this cancer. Not enough people know about it or understand it, more awareness is needed. Thank you for responding, it helps to know we are not alone in with this disease. God Bless you and I pray your mother is doing much better soon.

Em

augigi
Posts: 89
Joined: Dec 2009

Em, I'm sorry to hear about your husband. My mother turned 65 in January. 35 years is not long enough for me to have had her around but I just have to take every day as it comes, and be grateful for any time we have. Blessings to you and your husband.

Em
Posts: 36
Joined: Jul 2009

Thank you Augigi. There are days that are just so hard, last night was one of them. Today he is better, but having more pain. The shame of all this is innocent people like your mother and my Jim and many others are suffering for something they are not responsible for, there is still a lot of Asbestos being used in so many products all over the world, Canada still imports it as many other counties do, frankly I don't think anywhere near enough is being done here by the EPA in the United States either, as there is just not enough oversight/regulation being enforced. I read that when the Twin Towers in New York were attacked, it released one ton of asbestos, all those people there at that time have been exposed to this horrific disease. There just needs to be much more awareness and research done. I am terribly sorry about your mother too. We need to take it one day at a time, and try our best to make them comfortable, and pray desparately for a cure, soon. God Bless you and your mum.

Emily

augigi
Posts: 89
Joined: Dec 2009

Yes, I read that a lot of the 9/11 first responders are sick with chronic lung diseases now, as well as facing the prospect of asbestos exposure which may turn cancerous later. It's horribly sad given that they were going about their jobs and trying to help people. Just terrible that asbestos is still permitted to be sold, given all they know about it now.

Strangely enough, my sister's father-in-law died of mesothelioma a few years ago, he was a shipyard worker. So now both she and her husband will lose a parent to this awful disease.

I'm not sure where Jim is at in terms of symptoms, but I just wanted to mention that both the home oxygen and the morphine liquid have been the best thing for mum. She was VERY resistant to both, thinking oxygen was for cripples and morphine meant you were dying. As it turns out, just 1ml of morphine and she is much less short of breath and it's great for the pain too. Just something to think about in case you're not there yet. Also, we got home palliative care involved a few months ago, and they are fantastic with symptom management and just having someone to call at 2am when mum's crying from pain or panicking with shortness of breath.

Wishing you both the best.

Em
Posts: 36
Joined: Jul 2009

I am so sorry to hear about your sister's father-in-law and now her and your mother. It is just so heart wrenching and frustrating, that more should be done and I don't believe it is.
I appreciate very much your suggestions of medications. Jim is not doing as well today, he is having such a hard time eating. He is not taking morphine yet, but I am sure most likely he will some time. We leave tomorrow to go to NIH in Maryland for a check up and I am concerned what the c-scan might reveal. And thank you recommending palliative care, I am not sure how to go about getting this, is it similar to hospice, do you know? I lost my mother when I was 19 to ovarian cancer, she lived six months, and my father had died in an automobile accident just 12 months before she died. Well, thank you again Augigi and blessings to you and your wonderful mum.

Emily

augigi
Posts: 89
Joined: Dec 2009

Yes, palliative care is the same as hospice. They are there to help treat symptoms rather than treat disease.

There is something called Megace that is given for poor appetite that i have read several people on here having good results with.

I'm so sorry Jim is having a hard time, it's even harder for us to watch it, I think.

Mum had some more chemo and is doing great this week, so thankful for the blessing of each good day she has.

I hope your checkup went ok.

Em
Posts: 36
Joined: Jul 2009

I am so glad you respond to my postings. It is comforting, because very hard to find others who do post about this cancer.

We did not have good news from the c-scan at NIH this Wednesday, the disease is progressing and moving under the other lung and some into his stomach. His heart is ok and we are trying to focus on that as being positive. We also were able to see another doctor at NIH about another clinical trial for Jim. We will go back to NIH April 26th for three days, they will test him to see if he can qualify for the trial. Most important it seems to qualify, is if he passes the heart tests. Jim said even if this does not help him, he wants to be able to contribute to studies to help others with this horrific disease in the future. While Jim weighs 196 and is 6'1" the doctor would like him to put more weight on for this trial, and he gave Jim a prescription of megestrol (which sounds like what you mentioned above). Jim has taken it for two days and we are seeing an improvement in his appetiate. The doctor at NIH told Jim to stop his chemo here as it was not helping him.

Please keep in touch and let me know how your mum is doing, I care.

Blessings,
Emily

augigi
Posts: 89
Joined: Dec 2009

March 25th was the 1 yr anniversary since mum's diagnosis.. guess we just have to be thankful that she is still here. She had in her mind that she wouldn't make it past Easter this year, and she's still here.

She had reduced dose chemo last week and has had no nausea, just tiredness, so that's a relief; if she'd had nausea again I don't think she would've had any more treatment. Things are stable so I am staying an extra week in the US to get some work done, some stuff taken care of before I head back to Australia.

I'm sorry to hear Jim's cancer is progressing.. it just keeps marching on, doesn't it? What type of chemo was he having that didn't work, if you don't mind me asking? You may have said, but I can't remember.

I hope you guys cope okay until your next appointment. Fingers crossed that he qualifies for the trial! Hope you have a good Easter.

Em
Posts: 36
Joined: Jul 2009

So good to hear back from you. Jim has been on chemo of Gemzar (or Gemcitabine) and Carboplatin since February 3rd. Today he was feeling very poorly so I have an appointment with the oncologist here for this afternoon (I am going to argue for oxygen for him). I personally do not think Jim will be able to go 4 weeks (that is what is required before he would even be tested to see if he would qualify for the trial) without some kind of chemotherapy. The doctor at NIH has suggested he might go back to the Alimpta (he had that last summer at NIH) and Navelobine (Vinorelbine) here in Carlisle, and right now I think that would be best for him. I think it is too dangerous at this stage of the disease (one year April 28th) to wait that long for a trial that is not a new trial either, just such a gamble at this time I think.

Are you in the states right now? Did your mum receive treatment in the states? Well I better go and get his ready for the doctor appointment. Have a great day, we must be thankfrul for each and every one of them. God Bless you.

Em

augigi
Posts: 89
Joined: Dec 2009

I live in the states but mum is in Australia, so I have been going back and forth. Heading back there next week for a few months. Luckily my work has been fantastic about giving me time off, first FMLA and now personal leave.

I did think a month sounded a long time to wait for treatment for Jim. I know they gave mum a break from chemo for 2 months and the cancer went mad and grew enormously in that time, the deterioration was very bad until she got back on the chemo.

Bad news today for me, I'm afraid. Mum had a lot of pain (good lung side, near the ribs, sharp pain) and shortness of breath a couple of days ago so my sister took her in to the hospital. They did a bone scan and CT in case the dexamethasone had made her bones brittle/break. Unfortunately they found a spot on her spine, at the T8 vertebra. So I imagine thats what has been causing the nerve-type pain that has annoyed her for a couple of months. They just treated with pain meds and steroid until now which eased the symptoms. They are considering radiation therapy which I know scares her to death.

It's just so hard to be a world away and unable to know what's going on, esp when you're a nurse like me and you can't help at all. I leave again Tuesday so hopefully things stay stable until then. I suppose the spot on the spine doesn't change the outcome, but it feels like a step backwards anyhow .. so I'm a bit miserable tonight!

Hope things are better for you guys at the moment.
Jen

Em
Posts: 36
Joined: Jul 2009

HI Jen,

I completely understnad how you are feeling. I have felt like this from the moment I woke up today, it just seems like there never is a glimmer of light. One step forward two steps back. I don't know if I mentioned this, but I was finally able to get a prescription for Jim for oxygen, what an ordeal though. He is not using it as much right now, and today he is very tired.

So you are a nurse too like your mum? God Bless you both, I cannot think of a more wonderful profession. There is such a shortage of nurses too, and they put in such long hours. It takes a very special, gifted person to do this job. I am a retired federal bank examiner, and now feel like I am becoming a nurse, Jim had a catheter put in his lung last June and I drained it every day, and then every few days until it was removed in August. Then came the shots (for blood clots after he participated in the clinical trial at NIH last year) now it is bowl problems. My heart just aches for your mum and my Jim and all others suffering from this disease. Even though the doctors at NIH said some of this has progressed, they did say his heart was ok, so we try to focus on that. We have to look for that glimmer of hope I guess. Anyway, I have actually found it rewarding to be able to help those so sick like this, I never thought I could do it, but so far so good. Well, I best go check on Jim.

I have read some things recently about a possible vaccine for lung and maybe mesothelioma too. Are you familiar with the curemeso.org website? MARF Mesothelioma Applied Reserach Foundation, great place and wonderful nurse Mary for assistance. Please keep in touch, comforting to have someone who understands this and can share thoughts.

God Bless,
Emily

augigi
Posts: 89
Joined: Dec 2009

Hi Emily, thanks for your kind words. Yes I always said there's no way I'd be a nurse like mum, thought it was gross, but fell into it and now I love it. Both my sisters are nurses too. I work with very sick people, but it's a whole other thing looking after someone you love, it's so hard to see them sick and in pain. I do know that mum feels better when I am there and always told her that I would look after her if she needed it. It's the hardest thing I've ever done, but I know I will always be glad that I did. Apart from anything, being able to help and spend that time together is a blessing.

They found that the spot on mum's spine was a compression fracture, not a metastasized cancer. Probably due to normal osteoporosis changes plus dexamethasone. So now they can't use the dexa for nausea/pain anymore, so we'll see how she goes with her next chemo. She sounded terrible when I called yesterday, they had just increased her oxycontin and she sounded very tired and had slurred speech. I know she hates that, so we'll see how it settles after her body gets used to it for a few days. They are keeping her in until I get home so she doesn't have to cope with just Dad to help, he's a bit useless with illness although very proud if he gets to give her a pill or some morphine!!

Do encourage Jim with the oxygen - mum was very resistant to it, but it makes a huge difference in both shortness of breath and exhaustion. I can always tell when she's sounding off/tired/sob and tell her to put it on.

I had a nice Easter at a friend's family dinner, although it made me a bit sad that I couldn't be with my own family it was very kind of her to invite me.

Well, 2 more sleeps till I head off back home, so I will be in touch after I get back. Can't wait to see my mum. All the best to you and Jim, hope you had a nice Easter.

Em
Posts: 36
Joined: Jul 2009

Hi Jen,

I hope you and your mum are both doing well. I am a little behind getting back to you, but Jim had a serious set back this last week. In fact, the last two weeks have been very difficult, as he has declined more then ever before. We have now cancelled this up coming trip to NIH in attempt to see if he could qualify for another clinical trial. We called in Hospice, reluctantly, this week. He is only drinking fluids, no foods since Sunday, the day it seems things really turned around, although a week ago today (Thursday) is when I would say things really started to change. He was very depressed, I called the local cancer center and they doubled his pain meds, which helped, but also made him disoriented. He is so weak and we now have a hospital bed in the house. This is just so heart wrenching, I wish I had better news to write about. Well, I better go and check on him, please keep in touch when you can. Thank you Jen.

God Bless,
Emily

augigi
Posts: 89
Joined: Dec 2009

Oh dear, I was worried that was why you hadn't been here. I have been checking to see if you would pop in. I am so sorry to hear about Jim. I hope hospice is helpful, they have been a godsend to us. Mum is also v. depressed, not eating, nauseous and in pain. It's really just miserable, you wouldn't leave a dog like this as they say.

Do the hospice staff leave you with morphine liquid to dose him with if required? That has been the most useful thing for mum when she is really short of breath or in pain.

You are in my thoughts and prayers, look after yourself as well as Jim.

augigi
Posts: 89
Joined: Dec 2009

Em, I am thinking of you & Jim. I hope things are okay and that you've just been too busy to post.

-Jen

Em
Posts: 36
Joined: Jul 2009

Hi Jen,

I am sorry to say my Jim died Sunday evening, April 18th at his home by my side. He started not doing so well the Thursday after Easter. His death was a shock though, because this happened so fast in just 10 days. Jim had been diagnoised almost one year (April 28th). His funeral was in Michigan and I just arrived home after staying there a while tonight. I still cannot believe it and have so much anger in me because I know asbestos is still be used out there. We have to work harder for a cure, it is our only hope. The MARF - Mesothelioma Applied Research Foundation we put in his obituary for contributions to assists in finding a cure. Their website is curemeso.org (don't know if I had mentioned this before to you). They recently funded 8 grants for meso studies, including one with a vacinne.

I am just heart sick, Jim was all I had left. I pray your mum is doing better Jen. For some reason women do better with this disease then men. Please keep in touch so I know how you and your family are doing.

God Bless,
Emily

augigi
Posts: 89
Joined: Dec 2009

Oh Em I am so sad for you! I closed my eyes and said a prayer that this wouldn't be the case before opening your new post. I am so sorry for your loss, what a shock that it was so sudden. Easier on Jim perhaps, but much harder for you to accept and deal with. I understand your great anger.. I feel so ripped off, it's so very unfair of a disease.

Every time I see something on TV with a family or someone getting married, having kids.. I can only think that I don't get to have my mother around for that. It sucks.

Mum is up and down - I can definitely see how quickly things can change - Mum was sick for a week, we finally got onto good anti-nausea stuff and she had one good night. Then the next day she woke up with a bad chest infection and has been terrible since then. A few times I've almost taken her into hospital but they can't really do anything I can't do here at home. She's on antibiotics and I am hoping they kick in soon. The constant coughing is very hard because it causes so much pain. It's very hard to watch someone you love, who you're used to relying on, be so weak and frail.

I know I don't know you or your husband, but I am truly very upset by your news and I know there's nothing I can say that will help. So I will just say that you both will be in my thought and prayers, and I hope you find some peace after the anger subsides. God bless.

Em
Posts: 36
Joined: Jul 2009

Thank you Jen and bless you, your emails have been a great comfort to me, and should you want to write about your mum I would love to hear from you how she and you are doing. Is she still having chemotherapy? Jim had stopped around March 17th as the doctors did not see any good it was doing him. I question that, and think he should have been put back on Alimpta at least, as he did have a positive response with that at the NIH clinical trial. The doctors and nurses at NIH sent a beautiful card with kind comments about Jim to myself and his daughters. He was the best patient, he would let them do anything to him, if it could help perhaps himself or others in the future. I still cannot believe he has died, I am really numb as I write this Jen. Take good care of yourself and your mum.

Love,
Em

augigi
Posts: 89
Joined: Dec 2009

She hasn't had any chemo since March, because she had nausea and now the chest infection. She was terrible last night so I called the palliative care nurses and they organized for me to take her into hospital today. Then she had a fall on the kitchen floor while we were getting ready to go.. then she was just apologizing for scaring me.

I am just worried she won't come home again, she is starting to say that she's so tired and she's sick of this and ready to go. I'm not ready, I'm not ready.

Em
Posts: 36
Joined: Jul 2009

Hi Jen,

I understand completely how you are feeling, no one is ever ready, and we must continue to do the best we can for our loved ones. In hind sight, I wish we would have had Jim continue on a different chemo therapy, rather then let him go with out any treatment for 30 days in order to qualify for a clinical trial. I wish the doctor in our small town would have advised against it, but he didn't, instead he encouraged it. Your poor mum, Jim had a few falls too. Keep praying, and take care of yourself too Jen, we are not any good to them if we don't. I thanked God I made it a year without being sick to take care of him. I am just really numb right now, missing him very much. Please keep in touch so I know how you are doing Jen. And you will be amazed how strong a woman you are, your mum needs you this way too.

augigi
Posts: 89
Joined: Dec 2009

Good news today - Mum came home from hospital. Still weak, but a thousand percent better after the treatment for her chest infection. Hope things are okay with you.

Em
Posts: 36
Joined: Jul 2009

Jen, that is wonderful news, I am so happy for both you and your mum. I pray that she continues to improve. As I mentioned before women seem to do better then men with this disease, so we will continue to think positive and have hope and hope soon they will find a cure for mesothelioma. God bless you and mum.

Em

augigi
Posts: 89
Joined: Dec 2009

Thanks Em. It's very kind of you to worry about my mum when you've lost your hubby. How are you doing?

Em
Posts: 36
Joined: Jul 2009

Hi Jen,

Thank you for your email, I am doing ok, have good days and bad days, sadly most have been not too good lately. I miss my Jim so very much. I just don't know what I am going to do next, I miss his voice and every thing about him. I still am numb, cannot believe it has happened. I pray your mum is still doing better Jen. You take good care of yourself too, we need excellent nurses like yourself.

augigi
Posts: 89
Joined: Dec 2009

It's about a month since Mum came home from hospital after the chest infection, and she's back in right now, this time in the palliative care place for management of pain meds. She was up to such high doses of oxycontin that she was totally loopy and hallucinating, but still in pain. So they stopped that and started morphine and some ketamine for the bone pain. Only been 2 full days so far, but she already seems a lot more clearminded and painfree, so here's hoping. The nurses did tell us this palliative care dr is phenomenal with pain management, so hopefully he lives up to the hype.

I don't think it will be that long though.. the decline is clear to see in terms of how little mum can do now. I don't want to lose her, but I can see that it's getting to the point where the quality will be so miserable that she would rather go. Sometimes I realize that I've already lost my mum.. this anxious, frightened, old lady with a walker and oxygen can't be my mum, my bossy, bolshy mum who was a force of nature until this sudden diagnosis just over a year ago. It's just not fair.

Em
Posts: 36
Joined: Jul 2009

Dearest Jen,

It most certainly is not fair, and there is not a day that goes by when I feel that justice has not been met with the manufactures and distributers of asbestos, and also why more funds are not available to find a cure. My heart goes out to you and your beloved mum. I am so glad you have a good palliative care doctor, I was not too fond of what we had available here for his care. It all seemed to be so routine to them, it was just so frustrating. The good thing (if there is such a thing with this disease), is the mophrine I belive helped Jim the most. It also helped him to have a peaceful death. My doctor back in Michigan told me mophrine helps the body to relax and I was so grateful he wasn't in duress. I just miss him so much, I can't tell you enough. You and your mum and sisters are all in my prayers Jen.

Love,
Em

augigi
Posts: 89
Joined: Dec 2009

Thanks Em. It's so good to hear from you, I have been thinking of you.

avg00
Posts: 1
Joined: Jun 2010

Hello ladies! I've read your entire post and like you surprised there are not more folks posting about this cancer. As you both have mentioned I also have a lot of anger around this whole mess. My father was diagnosed with Pleural mesothelioma last July. Last September he went through a major surgery of removal of the lung. We all had very high hopes until earlier this month it was found that the cancer had spread to his stomach lining and the other lung. He just recently started his chemo and is having a rough time right now with no appetite and very weak. I am not sure if what he is experiencing is due to the treatment or the cancer, perhaps both. But wanted to thank you both for the information you have given on the different options given to help alleviate symptoms. I've written those down and will be discussing this with my mom later today. Em, I am very sorry to hear about your husband. Jen I hope your mother is doing okay.

Best wishes,
Adriana

Em
Posts: 36
Joined: Jul 2009

Welcome Adriana, please keep us informed how your father is doing. Where did he have his surgery? Jim was supposed to try for this too, but the cancer had spead to his stomach, so he did a clinical trial at NIH which I firmly believe extended his life at least five months. Then he had chemotherapy here in Carlisle, PA. Do you know how your father was exposed to asbestos?

If you have any thoughts or questions, feel free to write to us. God Bless you and your family.

Emily

Em
Posts: 36
Joined: Jul 2009

Please keep in touch with me Jen, I care and want to know how your mum and you both are doing.

Blessings and love,
Em

augigi
Posts: 89
Joined: Dec 2009

Hi Em :)

Sorry for the delay, just been busy. I have my sister and her kids in from interstate so we have had the whole family together in one city which is very rare. We were able to bring mum out yesterday for a few hours to take the kids bowling which she seemed to enjoy watching.

She was great for about a week after coming home on the new pain regime, then has gone very anxious and panicky the past few days. I have her booked in to a clinical hypnotherapist this week to see if it helps the anxiety/panic attacks at all. Physically she's not that bad (relatively), but the anxiety is crippling.

Adriane, it sounds odd to say "welcome" to this unfortunate group :( Sorry to hear about your dad.

Em
Posts: 36
Joined: Jul 2009

It is so good to hear from you Jen, thank you for writing!

Is your family here in the states? There are fireworks going off as I type this celebrating the 4th of July.

In the hospice package they had Ativan which helped Jim with restlessness, it may be in the family of xanax, both I believe are to help with anxiety. Is your mum receiving any medication like that? There was also Haldol in the hospice kit, but we were reluctant to use it, his sister and I had concerns about the affects of that drug. I am glad to hear that physically she is not too bad, in fact, that is very good news. I am trying to remember when your mum was diagnoised with this disease.

Please keep in touch and let me know how you and your mum are doing, again it was really good to hear from you Jen.

augigi
Posts: 89
Joined: Dec 2009

Hey Em. Yeah we tried Ativan, but it seemed to make her more dopey and not help the anxiety that much. The doc suggested Xanax last week but mum doesn't want more drugs since she's already quite sleepy. Family is in Melbourne, Australia.

Diagnosis was March 25th, 2009.

Edit: Unfortunately she has got a lot worse in the last week, we thought maybe it was the drugs needing adjustment, but the palliative nurses seem to think it's just the beginning of the end. I suspect mum has another chest infection actually - she changed so suddenly, and has a cough and temperature so I think that might be that - that made her anxious and confused last time. We'll see.

Em
Posts: 36
Joined: Jul 2009

HI Jen,

I know the ativan and xanax both will make you tired, I do think the ativan helped Jim, that and morphine seemed to help him to relax. Ten days before he passed, he seemed to change suddenly, not too much of a cough, more lacking in strength, and no appetite. I think the most important thing to try and do is keep one comfortable, even if they may be more tired. I didn't want Jim to suffer and he didn't he died a peaceful death. I just miss him so much Jen, I still have not come to terms with this and wonder if I ever will. My prayers are with your beloved mum and you and your sisters. God bless and please keep in touch when you can.

Love,
Emily

augigi
Posts: 89
Joined: Dec 2009

Bad news, I'm afraid. Mum had to go into the hospice unit on Thursday as she was very agitated and confused, also I thought she had an infection. Turns out she does have a urinary tract infection, but it doesn't really matter anymore. She is in a coma now and on a morphine drip, it's just a matter of hours to days. Honestly, although I will miss her more than anything, I am so glad I've had this past 8 months at home to spend with her, and she was so poorly now that it's really a relief to think she'll be out of pain. So sudden though - a week ago exactly she was at the bowling alley watching the grandkids.

augigi
Posts: 89
Joined: Dec 2009

Well, she lasted a few more days and passed away peacefully this morning at 6am, while I was sitting with her and holding her hand. It was very hard to watch her struggling to breathe and I feel immense relief that her struggle is over.

Em
Posts: 36
Joined: Jul 2009

Oh Jen, I am so very sorry, my heart goes out to you and your family. It will be three months tomorrow my Jim passed, and I just miss him terribly. I believe Jim passed peacefully, while he was breathing with his mouth open, he did not appear to struggle, and that was a relief to me. If I remember correctly I believe your mum was around 68 or so, which is how old Jim was. We have friends who just commented yesterday, they still cannot believe this has happened to him. He was such a healthy stoic man all his life. I just cannot extend to you enough my sorrow and heartache for the loss of your beloved mum. Please continue to keep in touch so that I know you are doing ok. God Bless you for being such a loving, caring daughter, your mother was very blessed to have you.

Love,
Emily

augigi
Posts: 89
Joined: Dec 2009

Thanks Em. It's almost a week now and I don't know how I will cope without her around. I guess you just go on because you have to, but I will have a big hole where she used to be. Mum was 65. It really wasn't enough time - her mother is still alive at 88, so I thought I'd have her a lot longer. The hardest thing is when my little niece asks where Nanna is.

Em
Posts: 36
Joined: Jul 2009

I am 64 so I too feel your mother and my Jim were much too young to leave us this soon. Jim's mother is also still alive, and 88 years old. I am having a difficult time tonight as I looked at the clock the moment he died three months ago tonight, I miss him so much. No one will ever fill that hole in your life, but we must cling to the wonderful memories and know that some day we will all be together again. Please stay in touch so I know how you are doing. I lost my mom when I was 19 and my dad when I was 18, time does help, but no one can ever fill their place or role in our lives. And it is hard to explain to a small child what has happened too. Although I think the little ones may be more in tune with the heavens then us adults. Blessings and prayers to you dear Jen.

augigi
Posts: 89
Joined: Dec 2009

Hi Em, how are you doing? It's a month today since mum died, it feels like yesterday and it feels like a long time ago, all at the same time. We are coping okay, just spending a lot of time together with the family. There was a fair bit of fallout after mum died as she hadn't told any of her family interstate (mother, sisters, brother) so they were of course very shocked and upset that we didn't tell them mum was sick. But that's how she wanted it, so there wasn't anything we could do, even if we didn't agree. Nanna is nearly 90 and I think it hit her pretty hard, especially out of the blue.

I am heading back to the states and work next week, it will be good to get my life back after so many months off. At the same time, it'll be hard to leave my childhood house with mum all around me to go overseas. I do believe she'll be with me wherever I go though.

Hope you're doing okay, Em.

Em
Posts: 36
Joined: Jul 2009

Oh Jen, I am so happy to hear from you, I have looked here a couple of times to see how you were doing. Coping is hard, today was difficult as I am helping Jim's son-in-law clear out things from Jim's house. Jim and I had homes built side by side, it worked better for us this way, we had 24 wonderful years together, and I miss him terribly. It was one month yesterday your mum pass to a better place, and 3 months, 3 weeks yesterday my Jim's left me.

I'm sure it was hard on your other relatives, but it is important to have respected your mother's wishes too. I am reading books on grief, and a new one out that I have found a lot of comfort in, called "Visions, Trips and Crowded Rooms" by David Kessler, short chapters about medical care personnel, hospice and others who were with people when they passed.

Well, please let me know how you are doing again when you have the time. It is difficult to find someone who has endured this horrific cancer and to understand the sorrow and loss as we have. There are days I have such a hard time, I am dreading winter and Christmas this year. God Bless and protect you Jen.

Love,
Em

augigi
Posts: 89
Joined: Dec 2009

Hi Em, I hope you're doing okay. I veer from being ok to crying a lot.. it just still seems surreal that mum is gone forever. I am back at work in the US now, it has been good to get back to school and work but it also seems weird that my life just goes on now as if nothing happened. Esp after having 8 months off work and now being back full-time.

The hardest thing is that I just can't forgive myself for being so moody with mum. It was so stressful living back home with mum and dad in that situation with her being sick and relying on me, and I didn't always handle it well. Now I just can't believe I was so mean to my dying mother, I just can't forgive myself. She got one of those motorized shopping jeeps at the mall one day and was banging into things everywhere and I was so angry at her for some reason that I wouldn't even walk with her because I said she was embarrassing me. I just feel like crap for treating her like that, I don't know what I was thinking. I know she forgave it all and we left things on lovely terms, but I can't stop worrying about it.

Em
Posts: 36
Joined: Jul 2009

Hi Jen,

I'm so happy to hear back from you because although we have lost our loved ones for now (I truly believe we will all be reunited one day, at least I pray so), we are suffering at an emotional level that at times is unbearable.

Do not be hard on yourself Jen, you are only human, we all have our limitations, and the stress on us takes its toll, which contributes to our losing patience at times. Knowing we are going to lose them, and the frustration that no matter how hard they battle and we battle for them, the end will come some day is just emotionally devastating. I had two bad days last week, I can burst out in tears and cry so hard for so long, then it stops. The days are long, but memories do sustain us, try to think of all that you gave to help your mother, she knows that too. I have not talked with a therapist but am giving it some thought, not sure if it will help though. Well, you be good to yourself you have suffered enough, enjoy work and school, you have a whole life a head of you, and I know you will do just fine, remember all that you just endured and you did make it though and learned from this horrible experience, we just did God's Will (was not mine).

Please keep in touch and let me know how you are doing Jen, I care about you.

Love,
Em

augigi
Posts: 89
Joined: Dec 2009

Hi Em, how are you doing? My life is so busy with work and grad school, I don't have that much time to dwell on things anymore. I appreciate your kind thoughts in your last post - it's easy to remember the negative I guess. I have a cardigan of mums and her perfume and every time I smell it, it feels like she's back in the room, isn't it funny how smells are tied to our memory. She wore vanilla-scented perfume as long as I can remember so vanilla anything reminds me of her. Mostly I just feel lonely - I often think of thing to tell mum then remember that I can't. Knowing that person who is always on your side isn't there anymore is hard, mum was always my #1 fan and I guess I selfishly miss that.

What have you been up to?

Em
Posts: 36
Joined: Jul 2009

Hi Jen,
It is so good to hear from you! I had not checked back here for a while, wasn't sure I would hear from you, and was thrilled you did post. Where are you attending grad school? You are moving on and that is good thing, even though it is difficult, we have too and easier said then done. Soon it will be six months my Jim died, and I miss him terribly. I dread the winter months ahead without him, say a pray I can cope for I don't have much desire to live any more, he was my world. I have read 3 books on grief and have found them to be comforting. One that is fairly new by David Kessler called "Visons, Trips and Crowded Rooms" you might like it. He also wrote "The Needs of the Dying" and another grief book, I can't locate, but found it to be excellent. Yes, I have articles of Jim's clothing I keep close by, & many pictures. I talk to him and hope to get some sign he is near by, wish so much to get a response. And it is not selfish of you to miss the love and attention your mum gave to you, you are her daughter, she cherished you! We will all meet up again some day, I truly believe that. Keep in touch when you can Jen, it is wonderful to hear from you.
Love,
Em

cookie_girl
Posts: 24
Joined: Jun 2010

I have pleura mesothelioma and unbelievably a survivor at this time, I am 5 months in remission but went through hell for the last year and a half. By reading your post it helped me understand how my children felt, very frustrated. My son does not want to acknowledge that I have been sick but my daughter has been there and would let me know how she felt sometimes, which was important to me so I can keep fighting. Like she said on mothers day and her birthday is that all she wants is for me to live as long as possible knowing that everything that I went through will give me 2 to 5 years and hoping to prove the statistics wrong by being here longer. This cancer like any other cancer it is evil but the worst part is that this one is man made and I think that is the part that I hate about it. My husband had a hard time dealing with it and I think he has finally come to terms with it now. I was 47 years old when diagnosed on June 1, 2009 and now I am going on my 49th birthday in January. We just celebrated Thanksgiving (I live in Canada) which I rested all weekend, and went out on the monday to celebrate with my husband and both kids. I have no immune system right now so I catch everything and now I have a cold which wears me right out. I still have pain on my right side but take tylenol 3's for it. I had the radical treatments of right lung, lining, and few spots of diaphragm removed then chemo and the radiation. I am still healing from everything.

My scariest part of going through this is how are my kids going to deal with this when it takes me away, as they are only 22 and 24 years old. All I can say is that I am so sorry to hear of your lost but also do remember the good times that you all had with them. And know that you have made a difference being there for them to the end.

Hope this helps, understanding the other side as you have made me realize how my kids felt through all this. Thank you

Em
Posts: 36
Joined: Jul 2009

Hi,

I am happy you wrote. My name is Emily, age 64 and my Jim passed in April, he was 68 years old. The young lady who has been so kind to keep in touch with me is Jennifer, her mother passed a couple months ago. It is good you were able to have the surgery, that is definitely a plus, Jim was not able to have surgery. Women I have been told, do better with mesothelioma, and your age is also a plus for you. Did you have the surgery done in Canada? My Jim participated in clinical trials at NIH (National Institute of Health) Bethesda, MD. This was not far from where we use to live. He gave it his best, and also said if he could not be cured, he wanted to contribute flesh and blood to research, of which he did during the clincial trials. He had a positive reaction to the trial drug, I do believe it extended his life. You have to be positive, and know they are working hard on finding cures or other ways to control this disease. Never, ever give up hope. Your children just don't know how to react is what I think. I was only 18 when my father was killed in an automobile accident and 19 when my mother died of ovarian cancer, she just turned 42 was sick 6 months. It is difficult as a child, especailly not knowing what to do. But I think you have a wonderful family, and I believe you are all going to do better then you might think right now, try to focus on that. I have spoken with a woman, named Marilyn who has survived 9 years with mesothelioma. Take care, and God Bless you.

Emily

cookie_girl
Posts: 24
Joined: Jun 2010

I had everything done home, Calgary, Alberta in Canada. I have this wonderful thoracic surgeon that has worked with Dr. Sugarbaker which is the surgeon that started doing this radical surgery. He was very honest and broke the news to me in a very good way and informed me of the choices. I think the hardest part was telling my kids that there was a chance that I may not come out of surgery or be able to go through treatments. I guess i was in surgery a lot longer then I was suppose to be, it ended up to be 12 hours.

Now I am very fortunate to still be here but can get frustrated sometimes with not being able to do was I was able to do before. I still get tired easily, and I catch colds, flu's, and whatever there is out there. It doesn't take much to get sick.

I am thinking positive and will be back to work full time eventually again, and start playing sports again hopefully next summer. Might not be able to play all the sports that I used to but will play some.

Thank you

Em
Posts: 36
Joined: Jul 2009

Congratulations! You did very well with the surgery. They told Jim it would be at least 13 hours for him, but because they found a spot in his stomach he did not qualify for the surgery. You have been over the hardest hurtle, there are a lot of people who cannot endure or qualify for this very difficult surgery. I don't know if you have Boost Plus but it is a drink Jim had quite a bit that would help provide nourishment for him. He didn't have colds, we were lucky there. Remember try to take this one day at a time, I know Jim felt like he wanted to do all he could and hoped they would find a cure. You never know when they might. If you are interested in the future regarding any clinical trials, I would be more then happy to provide you with the telephone number and name of a nurse who could help you, she is very knowledgable with mesothelioma. Please keep in touch, if you have any other questions or if I could be of assistance to you, I would very much like to do that.

God Bless,
Emily

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