Mesothelioma

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

Lost my dad

paulrobstom
Posted by

My dad was diagnosed with mesothelioma on January 10th 2019 and his prognosis was that he had a couple of months to live. He was strong enough to receive 4 rounds of chemotherapy, but was getting weaker and weaker with each cycle. On the 26th of April we attended the oncologist appointment with him and were told that he was no longer strong enough to have any more chemotherapy. 

The following week he was put on a syringe driver and seemed to be coping well with it, but was sleeping a lot which assume is a normal process. On the 11th of May he was still lying in bed and actually sucking on an ice lolly as he was too weak to actually drink anything. During that night I was called back down to my parents house having only left 1/2 an hour before to have something to eat, and stayed there with my mum, brother and sister taking care of my dad. We had to call the out of hours nurses twice to tend to him, once as he was choking on his saliva and the second time as the syringe driver was beeping. About 10 minutes after the out of hours nurses attended for the second time, my father passed away. They had told us that we didn't have long left and we all rushed to be by his bedside to see him take his final breath. 

My dad passed away on May 12th, and it's now 4 weeks since he went, but the actual physical and emotional pain is unbearable, not only losing dad but also with everything else we have had to deal with such as the post-mortem, having the police come to the house and of course the funeral. We weren't aware of the post-mortem nor that now an inquest has to be held, so it's still a very challenging and difficult time for us. 

I'm sorry, I understand that this post probably won't help anyone else, but it's helped me in some sort of way in writing it all down.

Thank you

Paul 

latchbrook
Posted by

Hi Paul and a warm welcome to the online community

First of all can I offer my sincere condolences to you for the loss of your father.

I'm glad to hear that writing down what happened has helped you. You might also find that joining the bereaved family and friends group is helpful as you can share your feelings and get support. If you'd like to do that clicking on the link I've created will take you there.

We also have ask about bereavement support in the ask an expert section and you're welcome to post there as well. Wendy is a volunteer Bereavement Support Practitioner and is available to answer any questions you might have.

Wishing you and all your family my best

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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pottermouse
Posted by

Hi Paul

So sorry for your loss, I do understand all your emotions as I have just lost my husband to Mesothelioma on the 15th May, and my girls and grandson are grieving as well, and yes its a physical pain and not being able to hug your loved one, its the most unbearable, just to hold their hand, and most days I don't know why I even get out of bed, what's the point.

This dreadful cancer has taken away my future, my loving fit and active husband for 49 years is no more, and no one told us either that there may have to be a post mortem and the inquest, it might not have been such a shock if someone had mentioned it to us. 

There are no words of comfort I can say as I know they don't help, but make sure as a family you give each other support, love and lots of hugs for your Mum.

Kind Regards

Barb

Barb x
paulrobstom
Posted by

Hi Barb, 

Thank you for your reply. I’m so sorry that you lost your husband and your daughters and grandson have to feel this pain which unlike anything else. 

I can’t believe you weren’t told about the post-mortem nor the inquest either - it’s unbelievable that this information is not passed to families after diagnosis. The last thing that your family and mine wanted was to have to deal with theses thing under already stressful, emotional and distressing time. 

I how you feel - I feel guilty about coming back to work, I’m still not ready as I break down throughout the day in front of my colleagues. Like you I just want to stay in bed and sleep, not because I’m tired, but I want to shut the world away and not deal with anything else. I want to grieve for my father and not have to put a ‘face on’ to face the world. 

Love and lots of hugs to you too Barb, please take care of yourself and the family

Thank you

Paul

BirdK
Posted by

Hi Paul, I am sorry you have lost your dad, my dad passed away in December 2018 due to mesothelioma and although no PM was required, only due to a specialist reviewing dads case notes, the inquest has only just been confirmed for later this month. We were informed about the poss need for a PM by one of the oncologists, and I had read about it so it was not a surprise.

A lot of your story was the same for us, calling the nurses during the evening, and dad passing away soon after.  The out of hours GP who attended did not know about informing the police which was a concern, but again I had read about this so I phoned them and they were great.

This is truly a horrendous illness that we are learning more about each day.

Sending you hugs, take care of yourself and your family.

Xx

Katie xx 

Marhen
Posted by

Paul so sorry to hear about your Dad, that was so quick, to have to cope with your loss and a post-mortem with police being involved is in tolerable  for you all.  My thoughts are with you.  It’s hard for you at the moment but time is a great healer and in time you will remember the happy times, I know that’s hard to accept at the moment 

My Husband Henry was diagnosed Sept 2017 at 70 .  Had Chemo which worked very well, we had 3 months of a relatively normal life, then problems started again.  They started Chemotherapy but after 3 sessions they stopped it as it was doing no good. So they decided they couldn,t do any more so have stopped further treatment.

its hard to get our heads round it as he is still playing golf 3 times a week.   They have asked him to do trials which he has agreed to we had to go to Southampton hospital the other day for blood tests and scans . Henry has signed up for the trials it might not help him but might help others the drug trials start next Thursday, having to be at Southampton for 8am as it’s a 2 hour drive so have booked a cheap hotel for the night.

Glad that writing it down has helped, 

Margaret Davie

Marhen
Posted by

Hi Barb. Sorry to hear about your husband, Henry and I have been married 49 years.  Know Paul and yourself mentioned the post Mortem.  When the nurse came round to our house she apologised and said but I have to ask you if you will agree to a Post Mortem when you die.  Must admit it was a shock to me. And still don,t understand why a post-mortem will have to be held. 

As I mentioned to Paul they have stopped all Henrys treatment so don,t know how long he has but next week he is starting trials for a new drug,  as he says if it doesn’t help me it could help someone in the future.   We have noting to lose any more as know it’s just a matter of.  I just find it hard to accept he,s stilll playing golf 3 times a week,  and I have no intentions of stopping,him  as it keeps him going,  

best wishes 

Margaret xx

pottermouse
Posted by

Hi Margaret

I was  glad to hear that Henry is having treatments at Southampton as this is one of the leading hospitals fighting Mesothelioma, my hubby Steve was due to go to the Glenfield in Leicester for immunotherapy with Professor Fennell, but he didn't make it, he tried to stay fit and active right up to the end and we didn't expect his death so soon, and nor did he.

He has left a huge void in our lives especially for our Grandson who is only nine, he lost his own dad, our son in law last April to non small cell lung cancer, and had only six weeks from diagnoses until his death, that was at the same time hubby was diagnosed with Mesothelioma. his young life has been turned upside down, he still sends text messages to his Granpa telling him he loves him and misses him, life is cruel.

My two girls and I are trying to support each other but the foundation of our family is no more and each day just gets harder, not easy, there are days when I don't know why I get out of bed or even why I get back in it at night.

I hope you and Henry stay positive and live each and every day to its fullest, and make sure to show each other love and hugs.

Good luck love and hugs

Barb x

Barb x
Marhen
Posted by

Hi Barb thanks for your reply,  your poor grandson a double whammy.  I don,t know how Henry is still here,  it doesn’t,t make sense 

how it affects people so differently.  I,m dreading it when it happens but thank my lucky stars he,s still here,  when he first got the diagnosis we arranged a family meal at the golf club with our 3 sons, daughter in law and 2 grandchildren.   It was supposed to be just us   as we weren,t expecting him to see his 71st .  In the end our sisters and brothers were inviting themselves. From Scotland and all over   So it ended up being a meal for 30.  

My dream at the moment is to reach our Golden Wedding at end of Sept.  but am under no illusions, that it might not happen as have been told that once it takes hold he could be gone very quickly.  

Mt heart goes out to you and your family, time is a great healer. But you will still have bad times as my sister has who lost her husband 3 years ago.  At the age of 60.  She is still trying to come t9 terms with it all. 

Love a big hugs,  Steve will always be in your heartxx

margaret.  

paulrobstom
Posted by

Hello everyone, and thank you for following this thread and commenting - it’s nice in a weird way to read about others experiences when dealing with this unknown and deadly condition. At the moment I feel as if I’m walking through cement trying to do things I have to but without much success. It seems the days are getting worse not better but I suppose that’s the grieving process! 

Its not easy, and I wouldn’t wish this on anyone, but knowing that I can speak to people on here who know exactly what this feels like and the awfulness of it is very comforting. 

Big hugs to you all as I know what your going through!

Paul

Countrygirlblues
Posted by

Hi Paul, I am sorry for your loss.  Take peace from being with your dad when he really needed you. It will bring you comfort in time that you were with him.  They have to carry out a pm if the patient wasn't seen by a doctor in the finale week.  The inquest you don't have to attend it they will send you the script of it in the post.  I had to write a letter to the coroner about my dads life where he was born his family life and where he had come in contact with asbestos during his working life. all about him really which was read out at the inquest.  The coroner was very nice and caring it wasn't a terrible ordeal because of him. I hope it is the same for you and your family.

I had attended  all my dads hospital appointments and therapies so knew everything that had been done to him. I felt i did not need to sit in a room and listen to it all again. I cared for my dad for the last 12 months of his life. they gave him 3 months when he was diagnosed with mesothelioma but he  coped with chemo for a while and we had had him for a bit longer.  It is always hard losing a parent at any age. I am sure you are already sick with the saying time is a great healer. It is true but you and your family have many stages of grief ahead of you and you will all travel through it at your own pace. No right or wrong way.  May you take strength having the rest of your family and friends around you to get you all through the funeral. Remember you can always come on here to rant and rave no judgements are made on here. some of us have been through what you are going through and other sadly have it in front of them still.  Sending you a virtual hug and hope it gives you strength to continue to face the days and weeks ahead of you. Keep thinking of the happier times with your dad, and not just the illness times that took him from his family. 

with deepest sympathy for your loss

CLare