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Husband has Mesothelioma. 
Started by dorms
23 Apr 2015, 3:20 PM

My husband has been diagnosed with Mesothelioma. Its a terminal cancer which surrounds the lung & is caused from asbestos. Its been 14 months since his diagnosis & has been doing pretty good. Its on his right lung & he has now developed a blood clot in the left lung so he needs oxygen 24/7.  I was wondering if theres anybody else on this site dealing with the same diagnosis. Thank you

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Reply by KathCull_admin
23 Apr 2015, 4:44 PM

Hi


Welcome to our community dorms. The diagnosis may not be the same, but others here, like Marstin, NatR, Xenia, Oldbat understand what a diagnosis like this means to your husband, you and your family.


Do you have family and friends who are able to support you as well dorms? I imagine the last 14 months (and probably longer) have been filled with appointments, uncertainties, worries, lows and highs.


I look forward to continuing the conversation.


Katherine

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Reply by dorms
23 Apr 2015, 5:34 PM

Hi Katherine


I'm so glad I found your site. It was thru the cancer clinic here that I seen your web site posted on the bulletin board in the Drs office.


We have a very good support here as we have a Cancer Hospital here. They are giving my husband excellent care but...they can't cure him. He's getting chemo now for pain control but its causing him to have low hemoglobin & platelets so he's in every week for blood transfusions. His pain still isn't under control yet. I think this being a type of cancer thats just starting to show up after a person has been exposed to asbestos 40-50 yrs ago, the Drs. really don't know what to do or how a patient may react to different treatments.  They absolutely refused to remove his lung. Its not knowing whats ahead that gets me anxious but then I tell myself to take one day at a time. Some weeks we have as much as three trips at the hospital. Thats very tiring but I'm also thankful that they are just a 5 minute drive from us. Our daughter is here in town so she's been a great help. Some days she's our chauffeur & other days she's here to visit & do anything that might need doing around the house & just general support.  This is a rare type of cancer so I was wondering if there was anybody else on here going thru the same thing. 


 

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Reply by KathCull_admin
20 May 2015, 1:04 AM

Hi Dorms
I am sorry to have been so long in responding to you. Unexpected health concerns in my family came up.

Must have been tough for both of you to hear the words, 'they can't cure him'. How have the last couple of weeks been Dorms. Are his symptoms controlled? 

How are you holding up? You are managing so many roles right now - wife, friend, advocate, caregiver, mother - what do you do with your worry Dorms?

Katherine

 
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Reply by NatR
20 May 2015, 2:13 AM

Hello Dorms,

i want to encourage you and welcome you to this message board

so glad you found us andy apologies fog not writing sooner

katherone is such a good den mother for virtual hospice 

I am not that familiar with your husbands illness but I do know how serious it is
I sm glad to hear your daughter lives nearby and can be very helpful with appointments abc just getting there.

it is so hard to know the diagnosis is serious -and your messages on this board will bring other comments also.

keep posting and I hope you will feel you are among friends

working through an illness is a difficult thing not only for your husband ( the patient) but also to keep you connected, able to vent, ask questions and be understood

 Hope that you will feel you are among friends - you are!
sincerely 
NatR 
 
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Reply by NatR
20 May 2015, 2:15 AM

Sorry for errors - typing on a phone isn't always the best;

NatR  
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Reply by dorms
20 May 2015, 4:18 AM

Hi NatR & Katherine-thank you for your kind words, they mean so much.


My husband is still in a lot of pain. He had a double radiation treatment last week but so far it looks like it didnt do much for his pain. They were doing two different meds for his chemo treatments but have had to drop one of them as it was causing him to have low hemoglobin & platelets & had to have a few blood transfusions. His pain meds were increased last week but he only got about three days pain free & now its back more than it was before. He still goes out as much as he can. We went south to a casino & seen Vince Gill on stage. My husband is a classic country music lover. He gets very tired on these trips but he enjoys them too. I find these trips very tiring as well as I have to make sure we have all his meds & equipment & oxygen when we get to the hotel. He has a wheel chair which has to be lifted into the van as well & some days it seem heavier than other days. But I'll do what ever I can to make things better for him. I know eventually he won't be able to get out & about. He frets about all the things I have to do but he's slowly accepting the fact that he can't do much of anything anymore. He was never one to sit around doing nothing. I try not to think too far into the future. I know its going to get harder but our daughter tries to help as much as she can.  My husband is covered for everything through Workmans Safety Insurance Board as this cancer is job related. We have a super nurse from WSIB who looks after whatever he needs & we have a nurse who comes in one day  a week. That will change as well when he needs more care. So my biggest problem is being very tired & not being able to take his pain away. 


Thanks for letting me ramble on.


Dorms

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Reply by NatR
20 May 2015, 1:44 PM

Hi Dorms,

Rambing on, writing notes is helpful.  It gives you a chance to let things out, and in the process I believe it helps you realize just how much you do as a caregiver...and by connecting with others like myself you are validating this important part of your caregiving - your support and love of your husband.

I think it is dreadful that a job can destroy your health...and there are many risks out there in the world.  It just makes you wish you knew this years ago...and save your husband this difficult time.

He is so fortunate to have you - to get him out to those music events he loves...to enable him to hear music, see people, and make the most of each day.

The very last comment in your letter...struck me...and made me think about how much guilt a caregiver has.
Like you...I know the feeling of caregiving and watching a loved one or client day after day...wishing you could do more, wishing you could take away their burden and illness...but Caregivers already do so much

Dont forget that although you are not able to take away his pain - that you add immeasurably to his life...without you - he would be so limited in each day....so give yourself a pat on the back for making his world the best it can be.

I spent my day yesterday...with my granddaughter aged 20...but total care, and needing a buddy by her side...(as the staff in  her home were attending a funeral and replacement staff didnt know my granddaughter as well)  I was so happy to be there..so happy to give small tips to the staff...in case they ever need it...about my granddaughter and how much she understands...without speaking, and what things in her day make her happy...Sitting outside in fresh air listening to music and rocking...things like that.

I know that if I could have three wishes I would take away disability, and give her the gift of voice and better interaction with others...

You Dorms, are an exceptional person.  Your husband is lucky to have you.  You will find that the other members on this forum are like you....caring, loving, needing support and how to be good to yourself...while you care for others.

Is there any way that you are able to get away for a day or two?  Just to recharge your batteries?  Do something that gives you some healing?
Dont be afraid to do that...if you can get a replacement to care for your husband - please try to do that....it will help you a lot with the fatigue.

in the meantime...this place...is safe, a place to share, and gain support...and most of all understanding.
Wishing you welll today...
Hugs.
NatR 
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Reply by KathCull_admin
06 Jun 2015, 5:19 PM

Hello Dorms
The last time you wrote your husband was having quite a bit of pain - has there been any relief for him?  Pain can have so many faces can't it. The physical, the mental - pain can be so tiring & you wonder when it will ease up, and the emotional - needing to rely more heavily on you and your daughter and just the fact that he can't do those things he always did for the family. I hope the effect of the radiation treatments is helping to alleviate the pain. 

How are you? It must take a lot of energy to pack everything you need for the trips to the hospital (and those for pleasure) to have what you need and anticipate what you might need. Are you getting rest?

It's raining here today - I kind of like these days - but not too many!
Katherine 
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Reply by dorms
07 Jun 2015, 5:04 AM

Hi Katherine


My husband is still in a lot of pain. His meds have been increased two or three times but he only gets about one or two days relief then the pain is back again. I don't think the radiation has done much & they have to keep cancelling his chemo treatments because his hemoglobin drops so he has to have blood transfusions instead of the chemo treatment.


I have  days where I'm feeling tired & weepy but then I think of how my husband must be feeling. If I was in his shoes I think I'd want to be yelling & screaming about this happening to me. I know he's thinking this at times but never says anything.


Some days its hard trying to remember all the things that we need when we go to the hospital. I have forgotten requisition slips but the hospital just gives me a new one which I'm thankful for. I just have to make sure to take enough oxygen with us. I've found that the best thing for me to do regarding his meds is to make a list of the meds & the time that he's to get them. They keep changing all the time so this way it's easier for me.


When he has a bad night I don't get much sleep but I do try & have a nap through out the day if possible. Last week our daughter was going to a spa for a couple hours & my husband wanted me to go too but that isn't my thing. I wouldn't have been able to relax enough to get any good from a facial or pedicure.  My  husband had two falls last week so I dont' really feel good leaving him home alone. 


We had couple come & stay with us for two days. That was a nice break for us to see & talk to somebody else other than ourselves. Our friends came up to celebrate my husbands birthday. We were going to go out for supper then maybe go to the casino for an hour or two but he was in so much pain that we ordered in our supper & stayed home. This was the best choice for him. He enjoyed his supper but didn't have to tire himself out getting to the restaurant.


I just take each day as it comes. Try not to think too far in the future.


Take care


Dorms


 


 

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