Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

Feeling Lost

AngelshellR
Posted by

Hi there,

My dad was diagnosed on 1st February with mesothelioma. He was admitted to hospital after his dialysis on 6th January as his temperature was raised and he had flu, after IV antibiotics he was still poorly and he was then diagnosed with pneumonia. Not being happy with his recovery and his breathlessness he had a chest x-ray followed by a CT scan. The scan showed fluid around his lung and the hospital were unable to drain it but they managed to collect fluid to do biopsies. 

Several weeks later me and my dad were given the devastating news of their findings and the consultant told us that they were unable to operate or give any treatment due to the extent of the cancer and because my dad also has renal failure. I spoke to the consultant on my own to ask about my dads prognosis and he told me weeks to months which really upset me and I felt like my whole world had just fallen apart. 


Dad is still in hospital and they are trying to get a support package in place to allow him to go home soon but it’s a slow process and I honestly thought that someone would be around to offer us support as it’s very difficult and my dads mood can be understandably very low sometimes. 


I can’t seem to take in the prognosis of weeks to months as dad looks quite well some days apart from a huge weight loss over the last few months. So I am just feeling a bit lost right now and any advice at all would be most appreciated and welcomed. 

canary44
Posted by

So sorry to hear about your dad.

Ask to speak to a Macmillan nurse, they are so supportive and can help to put your mind at rest.


Pam. xx

canary 44

Scarlet p
Posted by

Hiya


You are not alone, there are many many people in this forum who will help support you. Definitely speak to a Macmillan nurse or call their helpline to speak to a councillor. My Dad Dad was diagnosed in October 2014 it was the worst news that i have ever had, i was in shock for weeks, devastated not knowing how life would ever be the same again. I was angry as it was so unfair and so horrible watching my lovely brave and strong Dad get so poorly. My Dad had chemo and lived for 2 years so i suppose we were lucky. 

I know its a cliche but try and make the most of the time you have, talk to your Dad tell him you love him. I wrote mine a letter a few weeks before he died telling him what a great Dad he had been, that i would look after my mum and reassure him that while we would miss him forever we would be ok without him. I think he found that comforting. Macmillan were very good at supporting him and my mum.

take care and please remember you are not alone.

xx

Midnightkitten
Posted by

Hello

My heart goes out to you. I lost my lovely brother just before Christmas from this cruel disease. He was diagnosed 10 months previously and spent his last six weeks in a nursing home.

I found out everythingI could about Mesothelioma and it's treatment and knew from the outset that time was limited.

I got a lot of strength and support from the people in this group. Every case is different but what I would say is talk to your Dad. Find out what he wants and let him know you will be with him and do your best to make those things happen. Show him how much you love him. Take pleasure in being able to be together even if it's just to hold his hand. Get out photos and remind him of what a special life he's had and that you are alive because if him. Laugh often, cry when you need to . We are with you in spirit all the way.


Midnightskitten xx 



koala66
Posted by

I'm really so sorry to hear your news.  It is such an enormous shock and does take a while to come to grips with it.   My mum was diagnosed with sarcomatous mesothelioma recently and given some 6 - 12 months, but has really gone downhill faster than I expected. It's so awful to see her in pain (as they are still trying to get pain under control) and feeling quite low too.  My dad is still around, he's in his 80's, and he's taking it pretty hard, so I feel that I need to be around a lot for him too, but I have small children to care for.  It's a sad time. 

I hope that you can get some support in place to enable your dear dad to go home where he feels more normal.  Do you normally live with him, or close by, or does he have anyone else at home? 

I second the advice of spending as much time as you can, take photos and video, laugh, reminisce and just enjoy his company.  We have had some very good times and lots of laughs since mums diagnosis, amongst all the pain and sadness.  Every moment is just more precious.  

Much love and understanding to you.  xo

AngelshellR
Posted by

Thank you Pam,

Your advice is much appreciated, it’s the feeling of not knowing and uncertainty. 

xx


AngelshellR
Posted by

Hi there,

Thank you so much for your reply, I really just didn’t know where to turn after my dad and I were given his diagnosis. Like yourself I felt as if my whole life had fallen apart in the space of a few minutes. 

I have spent lots of time with my dad since and often think that it’s a mistake and that he will get well again because some days he seems well in himself.  My dad is still in hospital at the moment and I have met with the Palliative Care Team & OT who are working on a care package so he can go home but it all takes time. 


Thanks again for you reply, I think it really helps to share with others who have similar experiences. xx





AngelshellR
Posted by

Thank you,

I am so sorry to hear about the loss of your brother. 


Like yourself I have been doing my own research on mesothelioma especially as I’d never heard of it before and the prognosis from the consultant was not very good at all. The only treatment for my dad  is Palliative care due to the nature of his illness and also because of renal failure. 


I am staying strong for my dad and we have had many laughs since his diagnosis, I even cut his hair in his hospital bed and it really picked him up a wee bit, even though I nicked his ear!!! 

We have not spoken a lot about the future and are very much living in the day right now as each new day is a blessing

xxx


AngelshellR
Posted by

Thank you so much for your reply, I’m sorry to hear about your dear mum, such a difficult thing to come to terms with. 

I asked the consultant on his own what my dads prognosis was and he said weeks to months which totally devastated me. I really couldn’t accept this as apart from a huge weight loss my dad didn’t look like a dying man, the consultant did add that he would probably deteriorate quite rapidly over the weeks to come but.........

My dad lost his beloved partner of 35 years 2 years past on 27th January and he has never really got over this, they were so great together and so happy. His partner died suddenly at home with him from a heart attack. Dads health has gone downhill from then on and was diagnosed with renal failure last year and has dialysis 3 times a week in hospital so he’s been through a really tough time. 

I live about 45mins drive from my dad & work full-time so it’s not easy, the hospital is about an hours drive from me and I have been going almost every day since his diagnosis as there is no other family and because I really want to be with my dad. 

We to have shared some good laughs and my dads sense of humour is wicked one day at a time is how I am getting by right now and I don’t know where my strength is coming from. We are working towards getting dad to his own house as soon as a care package is in place as 5 weeks in hospital is not great for anyone’s mood. 

Thanks for listening and best regards to you and your family xx

koala66
Posted by

That sounds tough being so far away but it is amazing where the strength comes from to keep going.  I think the 'one day at a time' is absolutely the way to go and I often have to remind myself that I can cope with anything, for this one day.  Tomorrow can wait and I try not to worry myself sick and become too anxious and overwhelmed. 

I hope that your care package is sorted very soon and dad can go home.  5 weeks is indeed a very long time to be in hospital and that he has retained his sense of humour tells a lot of the sort of person he is (and you) 

I also hope that you have some friends and support for yourself too.  Don't forget counselling and support linesif you think it could help x

Gr3enholm
Posted by

Hi sorry to hear about your dad. I just lost my dad on the 10th Jan to this horrid disease. Like you my dad was in and out of hospital he had a research operation that unfortunately didn' t do what it was suppose too. My dad had infections all the time. 

Everytime he was in we'd get told he'd get care packages in place we had a company called cordia who weren't that great. 


My dad didn't look that ill but I was with him all the time and new what he could and couldn't do due to breathlessness and pain. So when they came out they would look at us as if why I am I here.  My dad ended up telling them to get lost. Myself and my aunt decided to move in. I know its' not ideal for everyone but like you I worked full time and had a family. It worked for us and the time. When my dad wasn't in hospital. 


Louise