Mesothelioma

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

Looking for advice please

bea2206
Posted by

Hello

My Dad was diagnosed with stage 1 pleural meso in August 2016 and has done amazingly well fighting this evil disease for 3 years, but unfortunately has gone very downhill in the last few months and I’m feeling completely heartbroken/scared/lost at what happens next so was hoping I may be able to get help from anyone who has been through this

Just to give some background to my Dad’s story, he had 6 rounds of chemo up until Dec 2016 which seemed to work well and was then selected for the P/D operation which he had in Jan 2017!at Leicester hospital. Being such a huge operation it took him a long time to recover with a number of complications & at times I think he regretted having the op, however after a few months he was nearly fully recovered and a scan showed all traces of the disease had gone which was just incredible to hear. He had 3 monthly scans which were always nerve racking but he had nearly 18 months of scans coming back clear and we started to hope he might be one of the lucky ones, although his appetite was a lot smaller & he couldn’t walk as far as before the op which was to be expected with having half a lung removed.

In Nov 2018 a scan showed the disease had returned but only very slightly and my Dad was lucky enough to be offered immunotherapy either straight away, or try chemotherapy first & then immunotherapy once that no longer worked - with the Doctor my Dad decided on 3 rounds of immunotherapy straight away as it was felt he was a good candidate for it to work which he started in Jan 2019. He had one course of drugs and felt ok for the first few weeks, but towards the end of that course was feeling very breathless, he started on the second round, however after 1 week became very ill, not able to breath or even walk to the toilet without having to lie down, my mum ended up taking him to A&E and he was admitted straight away as his oxygen levels were so low, they told my mum he would have died if left another day.  A scan showed the immunotherapy had worked on the disease but had also been attacking his lungs and they were badly scarred.

He was in hospital for a week and put on strong steroids which seemed to help, but it was only temporary and from then on he’s been on oxygen and very limited in what he could do.  As he was too weak for chemotherapy there was no further treatment & he’s gone downhill since then, especially the last 6 weeks where he lost the use of his legs, barely eats and sleeps a lot.  There’s part of us that wish he’d chosen chemo over immunotherapy as that seems to have accelerated his decline, but we’d heard how good results of immunotherapy have been & saw that as a lifeline, it’s hard not to think of the what if’s though!

My husband & I and my nephew are doing everything we can to support my Dad & my mum & I've been having counselling to try to help with how I’m feeling as I have been a mess & unable to even consider a life without my Dad.  I’m now able to understand my Dad doesn’t have long left but it’s hard not knowing what to expect, I feel like I’m grieving already - I need to be there for my Mum and my children who adore their grandad but I’m so scared of what’s to come, I don’t know how to get through it - anyone who has been in this position I am so so sorry as it is the worst thing I’ve ever been through & I wouldn’t wish it on anyone, but could anyone offer any advice on how long my Dad has left or anything I can do to help him? I know things move quickly at this stage but it would be good to have an idea of what to expect from anyone who has been there.

He’s not eating and barely drinking, he just lies in bed sleeping & just about talking, the nurses have started coming in the last week and there’s talk of him going into a hospice but he didn’t want to if it could be helped so my mum has been caring for him, which is so tough for her and she does admit a hospice would be best as she can’t move him on her own now, but she doesn’t want him to think she wants him out of the house.  My mum needs to be getting support too, as she’s being so strong but I'm scared it’s going to get too much for her - can anyone tell me what support they found most useful please, so I can make sure she is being looked after?

Sorry for such a long message, I didn’t expect to write so much but it’s made me feel a bit better to get it all out & hopefully it can give some hope or help to anyone going through this as we are very lucky to have had 3 years with my Dad since he was diagnosed, which I’m so grateful for as we’ve created some amazing memories. I’m just devastated to see my once strong & active Dad now unable to move and no quality of life.  He’s fought so hard and bravely, I’m so proud of him!

Im so scared of the future & how we’re going to get through the next few weeks, if there is any advice of things that helped at this stage or the future I’d love to hear from you - it helps to know we’re not alone.

Thank you 

Bea x

bea2206
Posted by

Sorry one thing I forgot to include is that my Dad seems very confused and gets very anxious, especially at night, when he feels like he can’t breathe and gets very agitated, my mum is awake with him but it means she’s not getting much sleep so if anyone has been through similar & has any recommendations of how we can help him it would be much appreciated

Thanks again

Bea x

bea2206
Posted by

Sorry one thing I forgot to include is that my Dad seems very confused and gets very anxious, especially at night, when he feels like he can’t breathe and gets very agitated, my mum is awake with him but it means she’s not getting much sleep so if anyone has been through similar & has any recommendations of how we can help him it would be much appreciated

Thanks again

Bea x

Jocoju
Posted by

Hi Bea,

My heart goes out to you... having only been on this journey with my mum for a few months - I understand the sadness that it brings.

We are not at this stage with my mum yet, but I can only sing the praises of her nurses from Mesothelioma Uk. I have phoned them up on numerous occasions and always helps us get to the right person. I am sure you have already had contact with them - but possibly give them a call - chat through your feelings and concerns for your dad. Ask them to help you know what to expect and how you can help him and your mum I the best way as well as ensuring he has care at home for as long as he can.

It is certainly a hideous disease and feel heartened that your dad has had 3 years fighting it. It literally causes my heart to break thinking of my mum not being here with us all. Too young, too fit and far too  unfair.

Is it possible that it is the immunotherapy that is causing him to feel so poorly at the moment?

Hope your dad can turn a corner.

Best wishes to you and your family.

x

bea2206
Posted by

Hi Jocoju

Thank you so much for your reply, it’s the first time I’ve actually posted on this board so I really appreciate your message, it does help to hear from others going through similar situations, although I’m so sorry that you & your Mum are going through it, it is just so unfair!

We’ve not actually used the mesothelioma uk nurses, I’ve been on the website numerous times doing research but never thought to call them, we’ve found out today that my Dad is going into a hospice tomorrow so there will be nurses on hand for my mum which I’m thankful for, but I will give Mesothelioma UK a call so I can talk to someone - thanks for the advice.

We did hope initially that it was the immunotherapy making my Dad so ill & once it had worn off he would feel better but it’s been nearly 7 months now since he had it & the doctors have said his symptoms are unfortunately part of the disease progressing

I saw from another post that you are currently on holiday with your mum, we did the same & I know it’s hard holding it together when it hurts so much and you can’t help but think of the what if’s, but I do hope you get to enjoy your time away making memories together

Bea x

Jocoju
Posted by

Thoughts with you and your family. X