devastated

Hello ..my name is sarah and my 69 yr old dad has been recently diagnosed with terminal  mesothelioma ..he was working 16 weeks ago and we have been knocked for six ..he started with upset stomach which the doctor sent him to a and e as he was dehydrated and next thing he was sent a ct appointment and thats when it was found ..after a lot of weeks waiting for test results .

He is a smoker ..and always thought he would go the same way his father did which was lung cancer but we couldnt believe his diagnosis ..he worked with absestos in about 1967 ..long time ago ..he is being treated at wythenshawe hospital ..he having 4 lots of chemo over a 2/3 week period . they have said its small and hasnt spread ..obviously not curable but treatable . he hasnt had any symptoms of the disease ..chest ..coughing ..nothing at all .

But at the moment he is in such a poor state..he cant sleep ..(he eating fine .which is good) he exhausted all the time ..they think he may have had a mild stroke at some point recently ..as he woke up with his eye drooping also his mouth too ..so i think thats not helping . its like his body has given up on him but not in the way it technically should be ..because of the mesothelioma ..it seems like he is willing himself ill ..its not affecting him in that way yet ..even his oncologist said how fit he is . its breaking our hearts to see him in such a state and no matter wat we say or how much we be positive and take each day at a time and make the most of the fact he is fit and well he seems to be giving up already ..im so frightened if he like this now.. how is he going to cope with the chemo..i dont know what to do or say for the best anymore ..thanks for reading x

  • Hi fategg12 

    i am so sorry for your reason to come on the forum.  Your Dad is probably still reeling from the diagnosis too.  Watching our loved ones go through this is so hard but I can't begin to imagine how the sufferer must be feeling.  Hopefully in time he will pick up, maybe try and talk to him about how this is affecting him.  It's so hard to know what to do or what to say, or even how to act.  I wish you all the best, take care, Mandy x

  • Hi Sarah I'm so sorry for you and your family, I lost my dad to liver cancer Friday. He was told it was terminal 3 weeks ago and he gave up, he would have no medication so suffered til the end. He wouldn't tell us what he was thinking, he lied about the pain and we don't know why, he just pushed us away, I can't imagine what my poor dad was thinking, try and talk to your dad about his feelings it's so hard for the person and also their loved ones. Sending you my best wishes x
  • Hi Sarah, 

    I'm so sorry to hear about your dad. It's often a huge shock to see someone so close to you in a vulnerable state. It sounds like he has the best quality care around him. Chemo has horrible side effects... It's best to ask the nurses and/or doctors about specific concerns. However, for some of the side effects, there are certain non-medical products that can help. I discovered Live Better With a couple of weeks ago and they are brilliant at helping you find products for your specific side effects. They also have a whole range of guides that help you understand what you can do to fight fatigue and other side effects. I'll leave that guide link here. I hope your dad feels better. Stay strong! Thinking of you. Claire X

  • Sorry not been on for a while .thankyou so much for your replies ...my dad is extremely poorly now ..he went to see his oncologist after his first round of chemo , and was really concerned with how downhill he had gone ..weightloss..couldnt walk ..eye was drooping also his mouth , which in the beginning they said he had had a mild stroke but never heard anything else apart fron going for a mri scan ..that was 3 weeks ago .so when dad went to see doctor mid way through the 21 days of his chemo like i said was very concerned .so they kept him in for tests . 

    They chased up the mri results and it turns out the mesothelioma has spread to his brain and he has a tumour on his spine ..words cannot describe our devastation .the chemo has been stopped ..basically there s no point .and he has a couple of weeks to live they said .

    My dad knows whats going on and just wants to come home to die .which is where we want him .

    We havent had a very good experience of the hospital either which is not helping things ..because dad is so weak and helpless and struggles talking he finding it difficult to ask for things and he been shouted at by a nurse because he had an accident when went for a scan and some went on the floor..i was so angry because i wont have anyone speak to him in that way . he was nil by mouth for 4 days after he went in until he was assesed for eating abilities ..but the doctors notes hadnt been passed over to say he was fine to eat certain foods ..but they only checked the notes because my brother questioned it ..an investigation is underway about this .

    All this is adding to the overwhelming feelings we have of not being able to do anything for him ..but all the time he is in hospital we are going to have less time to spend with him at home .

    I am in such  physical pain now feels like my heart been ripped out ..with how my dad is ..especially in such a short time   ..i had to go on sick from work im in such a state cant stop crying ..we have always been close and when i leave him at the hospital he always whispers i love you ..you're the best daughter in the world..im so worried i will not be able to be there for my mum and brother and children once the time comes.

    All we want is our wonderful husband ..dad .. Granddad back home with us to spend every precious minute with him x sorry for such a long message x

    Sarah x

  • Dear Sarah

    i have no words that'll make you feel better or ease your pain.  I am truly sorry for you and your family.  Somehow you will get through this, you won't know how but you will.  It doesn't mean you won't cry every day, I do too.  Life wasn't meant to be like this was it.  So sad.  Just get through each day that's all I can say.  Sending a virtual hug, Mandy xx

  • Dear mandy 

    Thankyou so much for such kind words and virtual hug x my dad is still in hospital but hopefully will be home in a few days..once care plan is in place .we are just spending all our time with him . his funny ..amazing sense of humour, which  is still there.. which is fantastic to see ..he gives those nurses some stick !!..but in a nice way x..this is what we're holding on to ..how good his spirit is ..not what this disease has taken from him ..xxx take care

     

    Sarah x

  • Dear Sarah

    Your reply made me smile and lifted my spirits. I am actually a nurse and we love patients that give us stick and brighten our day.  Your dad sounds like one of those patients.  Hang onto those wonderful memories.  Take care, Mandy x

  • Hi Sarah,

    So sorry to hear about your Dad - seriously, the nurse who shouted at him needs reporting. There is absolutely no excuse for that sort of unprofessional behaviour - which was supposed to have been stamped out after the Francis report into Mid Staffs. 

    Best wishes to you and your Dad.

    Dave

  • Hello ..just to let you know my dad passed away peacefully this morning at 1.50 am ..we had moved him to a hospice on thursday as he was deteriorating so rapidly and as we had no carers or district nurses we felt it was best place for him and it was ..he died in no pain ..comfortable and was quick they said .They treated him with respect and dignity which is no more than he deserved .

     

    Sleep tight my wonderful dad peter xx

    Sarah xx

     

  • Hello Sarah,

    We are so sorry for your loss. I hope it is a little comfort that he passed away peacefully and it looks like they looked after him really well at the hospice.

    Our thoughts are with you and your family during this difficult time. Our sincere condolences from the Cancer Chat team.

    Best wishes,

    Lucie, Cancer Chat Moderator