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Old 07-08-2007, 10:07 AM   #1
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mother passed away

well after diagnosis in oct 2005 my mother passed away 27th june 2007. she fought long and hard but after starting chemo in nov 2006 she was never the same house bound and sick then once chemo finished in feb 2007 she went down hill . her pain was so hard to control and she spent the last five weeks of her life in hospital sedated . it has been the most horrific experience of my life seeing her in so much pain . i am pleased she is at peace and i am gutted there is no hope for others with this illness . i wish now she had not had chemo she wasted the last 8 months being unwell when she could have left chemo and carried on with her life they tried everything. orahmorph, morphine, oxycontin , oxycodone , tramodol , gabapentin, nothing helped with pain in hospital she eventually ended up on constant release pain meds of afentenil ketamin sickness meds and sedatives so she was unconcious her last few weeks at marie curie. they were fantastic but i wish there had been a cure i feel for you all for what lies ahead but i feel relieved she is at peace and out of pain . my thoughts are with you all !!!!!!!!!!!!!!!!!!!!!!!!!!!! XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX XXXXXXXXXXXXXXX

 
Old 07-11-2007, 01:16 AM   #2
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Re: mother passed away

Hi I am so sorry to hear your sad news,but at least the pain has been taken away from her.My dad was diagnosed 8 weeks ago and has never regained enough strength for any treatment.He is in tremendous pain and he has fluid collecting all over his upper body,from his waist to his shoulder blades.The docs say that they cant do anything else for him.He is on 2xfentynal patches,gabapentin,oramorph,zomorph,dexa methasone among others.This morning we have realised that he needs to go into pallative care to see if they can control his pain any better.He is so confused and agitated and often out of it for 12 hours a day.Only when the medication starts wearing off does he open his eyes and give us a wink.We wanted him to be at home so much in his last days but he is finding it increasingly difficult everyday.Hopefully we can bring him home when they sort his pain out.Am i living in hope?Its a cruel devastating disease that travels so fast.We are absolutely devastated.This disease needs more research,i find that many medical people havent heard of it or do not know anything about it.My dads only 63,and was just starting his retirement.I am so heartbroken to see him like this.Regards,jo

 
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Old 07-13-2007, 07:42 PM   #3
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Re: mother passed away

they said my mother was just going into the hospice for them to sort her pain relief out then she would come home but that was never possible as the pain was that bad they decided the only thing for them to do was put drivers in her so the meds were on a continuious release infusion this did help but then it led to that not being strong enough so sedation was gradually added more and more and she was unconcious her last week and half but it was the only way she was pain free. we wanted her home and had her at home as long as possible but it got to the point where there was nothing more we could physically do to help and nothing was working so the only option was pallative care . But they were fantastic it was a relief to have people who knew what they were doing and could relieve her pain. Remember everyone is different no case is the same with this illness. All i will say is if you have things to say say them sooner rather than later, there is so much i wish i had told my mother but by time i got round to it {because i thought oh i have plenty of time}time crept away then she was sedated . i still told her but i was i had a response. You can be at a hospice 24 hours a day you can sleep there , i know for the dignity factor my mother wanted to die in a hospice i know she would be relieved to know we were not having to do some of the things they had to do for her . my mother was 64 when she passed away . We were very selfish at first we wanted her stay home and we would care for her but honestly looking back she was going through so much pain trying to stay home rather than a hospice i wish we had done it sooner for her sake because once they could contnuiously pump meds into her it was such a relief to see the pain relieved . i must say though as you probably know everyday is different some days the meds were working then the next she went downhill and the meds were continuiously being increased which worked but she also was more spaced out and spent more time asleep but again she was pain free and in the end thats all we wanted . My thoughts are with you and no one can truely understand what you go through unless they have been through it it is the most horrendous illness i have ever seen and so much more research needs done i just wish it had been sooner so they could have helped my mother. i hope anything i have wrote has not upset you i am just being honest but never ever give up hope and just spend as much time as you can with him. take care and thinking of you. X

 
Old 07-14-2007, 01:16 PM   #4
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Re: mother passed away

Hi There-Update on my dad.
Hes been in palliative care for 5 days now and we are lucky if he is awake 10 mins a day.When he is awake its like he doesnt want to look at us,he rarely speaks,although i know there is nothing wrong with his hearing.We wonder if this is because he is too weak?Or is it depression?The nurses dont seem to know.I feel that he has lost all his dignity/pride as during his stay he cannot do anything for hisself and his now got pressure sores on the base of his spine.His pain is now being treated with oxynorm as well as the ones on my last post.I hope i am wrong but i dont think he will come home again,Could you answer me a few questions?1,did your mum sweat and have clammy skin?2,did she pass a lot of wind in her sleep?3,did her upper body swell up?apparently,this is because his lymph nodes arent working?.....I hate to see my dad like this and dont think we have had enough time to accept whats happening within eight weeks.His pain is unbearable sometimes and your right saying that when your out of it,its better for them.Its devastating my family and we are just about holding it together.Im sure you can relate to this and i am very grateful for your kind words and advice.take care.....jox

 
Old 07-15-2007, 01:21 AM   #5
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Re: mother passed away

all the meds he is on is just like my mother are they controlling the pain still? my mother was like that for about a week and half and i know exactly what you mean about how he is we all felt as if she has lost emotion she looked at us as if she was in a mood it was strange it makes you feel as if they aren't happy with some thing you have but PLEASE take comfort in knowing it is the meds and they also put my mother on an anti depressant which i don't think made a difference. gabapentin dexamethasone and the oxynorm, oxycodone together make them extremely sleepy we were gutted because we wanted her awake and to talk more we found our selves sitting over her asleep but when they tried to reduce the meds making her tird the pain came back with avengance. so there was no option but to increase again which she actually begged for. when the meds were not working as well they started to increase the sedative based drugs afentinil and ketamin and i am afraid she was never awake and we never spoke again then she passed away. yes she found she had major wind and found it hard to control she would be talking and passed wind and i know if she had realised this she would have felt so undignified. they had to put incontinece knickers on her because the meds were making her realise she needed a wee to late. may mum filled with fluid from the neck down her arms and legs were huge the skin looked so sore and stretched. they give her water tablets to help with it but they said to us it was lymph drainage system as there was less movement and the drugs. is he still able to get out of bed? it is strange question but my mother had this bad smell all over not disgusting but like different it is hard to explain i could even smell her on my hands after holding it and going home! my mother also had the mesothelioma left lung and once she was in hospice and went down hill you could see she started to develope like a growth from the back around the ribs to the stomach it was not huge just as if the ribs looked swollen but this is a sign , my sister in laws granda had this too. sweating for my mother was also an issue they had a fan blowing on her all the time if once she was sedated. when she passed away she still had bed sores as her body was not strong enough to repair them.
i am no doctor but when my mam was like your father it was not long before she was nearly asleep all the time they fitted a cathater and the doc spoke to us and said the was no way she could come home , but you can take them home anytime but my mother always said she did not want to die at her. how is his breathing. my motyhers was very laboured heavy but the day before she died they phoned us to go in as her breathing was very very fast that lasted 12hours she then had a peacefull night but the next day her breathing was so slow you were sitting over her waiting for the next breath then tea time she just stopped. what have doctors been saying? are all drugs oral and needle or are they on drivers continuious? whent hey suggest this i don't mean to be blunt but he can't come home. ask me anything anytime my thoughts are with you but remember i will be honest but every case is different i hope anything i have said has not upset you too much i just wish some one had of been this honest with me to prepare me. Take care love always thoughts and prays with you !!!!!!!!!! rememeber he knows you love him and when he is asleep he can still hear you the hearing is last to go nothing he says or does that seems nasty is not him it is all the drugs!!!!!!!!!!!!!!!

 
Old 07-16-2007, 10:15 AM   #6
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Re: mother passed away

Hi Thanks for you time and thoughts,i find your experience very helpful and am grateful you are being honest.My dad has deterioated in the last 2 days.He is now catherted and wearing pads,he would be mortified if he knew!When we got there this morning he has developed a ruttling noise when he breathes in,almost like a bad chest infection cold.The doc said that his body isnt strong enough to clear away the secretions as it is using all its energy to keep his heart going.His pain is being controlled at the moment and today he has managed to say our names and acknowledge his 2 year old grandson.He hasnt done this for a few days so we wondered if it has way of saying goodbye.He doesnt seem to be as confused today but is in a depressive like trance most of the time when hes not sleeping.He has bed sores,pressure sores,the meso lung and heavy swelling around his right upper body.I know what you mean by smell!its not nasty,just different and his room has the same smell.We have decided not to bring him home as we feel it would be too traumatic for him and it wouldnt be fair,also my mum wouldnt be able to cope if she had to make any decisions on her own,like upping his pain meds etc.did your mum have the same rasping breathing up to her last days?the doc said it would be sooner rather than later,but it breaks my heart watching him like this.we do exactly the same,sit over him ,talk to him and hold his hand.His meds are oral and needle but he couldnt swallow them this morning.He has developed blood clots in his lungs and diabetes from this cancer as well.my dad seems just to sweat down one side of his body,the good one!how much time do you think he has compared to your mum?Thank-you again,take care.your family are in our thoughts.....jox

 
Old 07-17-2007, 01:43 AM   #7
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Re: mother passed away

god it is like reliving it all again my mum geveloped the noise when breathing from secretions to they give her something to relieve this and it did help but i don't want to say this but that was about a week before she passed away. he is in the best place he will get the care needed my mum was only sedatated as meds were not working well enough so he may not be sedated. i am not a doc but i think if going from my mother by the sounds of your father maybe a week BUT EVERYONE IS DIFFERENT! as soon as his breathing slows unfortunately that was our sign and it was the next day. i know what you mean about pads and cathaters my mum would have been devastated if she had understood what was happening she wanted to die with dignity that is why she wanted to be in the hospice so we would not be cleaning up after her. the doctor said this to us when a person deterorates week to week they give them weeks but when the deterorate day to day they give days. my mum could not eat or drink by now we were just moisten her mouth she developed ulcers in her mouth and blisters inside her lips . they changed her bed to an air like bed which helped with bed sores . what colour is his wee in the bag my mothers was very redy brown . she was given a relaxant temazepam and some thing else because the pain made her very agitated she did not know where to put herself . they know when it is coming they call you in in good time if you wish to be there i was not till after she pasted away but my two sisters and brother were there . she was breathing really shallow and massive gaps between breaths then she sort of jumped her shoulders twice and a long sigh and she was gone. my sister said it was like a sigh of relief as she she was out of pain. talk to him all the time he can hear every thing even if he is sleeping . i know it is hard but honestly i am still finding it difficult but what helps is knowing that my mother is now free from pain and is with her mother and father and her younger sister watching over us. i am not religious but i do believe that. ask me anything and i always worry when i post that i may upset you and i apologise if i do . take care my familys thought are with you.

 
Old 07-17-2007, 11:37 AM   #8
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Re: mother passed away

Hi there,My dad had a bad night with pain last night.but has he is unable to speak or swallow the docs have decided to use drivers for his meds.Its such a difference from yesterday when he was quite calm.he is also very agitated,flailing his arms and trying to get up.The nurses said that he is anxious and its part of the process.Its awful to see, so they have given him mizasepan and a pain killer through the line,which as relaxed him a little.this is probably like the sedation you were taking about,He is unable to eat or drink and we are just keeping his lips moist.I have noticed that when he breathes,only the good side of his chest moves.a lot of family have been today and im sure that he knew.His wee looks quite strong coloured but he seems to be passing large amounts.the nurses had me in a room and said that we must take it hour by hour,what happened to the day by day?i have shared your experience with my family and you have helped us greatly to understand whats coming.how do you think you mum contracted the meso?was she in conact with asbestos?at the moment his breathing is quite stable,although quite as if its an effort.i will write again as soon as i can as i value your comments,thoughts and advice.im so tired and its so depressive for everyone but talking with you really helps us.take care....thinking of u....jox

 
Old 07-17-2007, 02:18 PM   #9
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Re: mother passed away

Onetruefriend - a fault with my computer means I have only just read your news. I am SO sorry. My thoughts are with you.

 
Old 07-17-2007, 02:30 PM   #10
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Re: mother passed away

I'm so sorry. I have only just been able to read this last thread and sent my last message about SAHA before I read this and feel very inappropriate. I'm so sorry for what you have been through / are going through and I dread going through the same. My thoughts are with you. x

 
Old 07-18-2007, 11:12 AM   #11
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dad passed away this morning

Hi Just to let you know my dad passed away this morning at 10.30.He waited until we were all there and went very peaceful.He just took a couple of deep breaths and went.Dont feel like saying much more,will catch you all later.From cutting the grass 12 weeks ago,to dying from this ravaging disease this morning.We are absoultley devastated.it certainly is a killer.thinking of you all.xxxxxx

 
Old 07-19-2007, 01:41 AM   #12
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Re: mother passed away

hi sorry to here about your father my thoughts are with you and your family i know exactly how hard this is . i know you will not feel like writing but any contact you wish to make or any questions you have just ask as we had a lot of trouble with coronas and even though we have buried my mother we are still awaiting her death certifate we only have a temp one as there has to be an inquest. We were advised that my mother would need post mortem but we were furious she has all ready been through so much but luckly the corona decided not to as the had a biopsy from when she was diagnosed which they can use to prove it was defo mesothelioma i hope this is the case for you. we are relieved her pain is gone and she is at rest and once she had been buried it does get easier i promise it is early and you never get over it is hurts me so much but you begin to smile at little qwerks they had and things you do and say remind you of them the good times . Be strong he would want you too!
my mum worked in a public house near the docks and her father worked there they think it was off maybe his clothes of the workers coming in at lunch times.

please take care and my thoughts are always with you and others going through this horrendus diease. XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

 
Old 07-19-2007, 02:34 AM   #13
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Re: mother passed away

Hi The Coroner has been in touch and he said that an inquest has been opened and he has issued a temp death certificate,He has told us to make funeral arrangements for any time after next Tuesday.Its my sons 18th birthday on Wednesday so thats out for obvious reasons.I feel so cheated and dont think its actually happening to us,i fear that the pain and anquish is only just starting for our family.My dad was an electrician and he opened a case before he died with a big solicitors,i will fight this all the way for him.The money means nothing its the principle.i just want him at peace so he can rest easy.its so bloody hard and i will never forget the pain he has endured.I will keep in touch,it helps to share thoughts and feelings with you.did your mum open a case?thanks for everything....jox

 
Old 07-19-2007, 01:48 PM   #14
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Re: mother passed away

my mother tried to claim but apperently the company called smiths dock would not take responsiblity as it was not diffind where she came into contact and company is not there anymore. We are not bothered about the money but would have liked someone to blame. hope you succeed. i hope the funeral goes well and everyone copeing ok well the best you all can . my mum died a wednesday and we seen coroner friday and it was in paper the tuesday and we buried her thursday so it was just over a week later we put her to rest . but as i have found out i have organised everything financially after for my father as he is not up to this but there is so much to do my head is swimming. take care and stay in touch

Last edited by moderator2; 07-19-2007 at 01:59 PM. Reason: posted contact info

 
Old 07-21-2007, 01:18 PM   #15
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Re: mother passed away

Hi The post mortem has revealed that dad had the most aggressive type of meso,plus blood clots on his lung which result from the cancer.They have released his body and the funeral is on Friday.My uncle also passed away this morning(from copd)so its a nightmare week for us.I keep thinking that my dads going to walk in the house,its like hes just gone on holiday or something.Our solicitors have said that because dad worked in a lot of asbestos jobs that he only has to prove just one.I hope they are made to suffer like we are and will be for the rest of our lives.we have had a full day of sorting out dads affairs but still have a long way to go.we are hurting so much and are living day by day.you have really helped meand i would like you to keep in touch,regards jo

 
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