Dad's Mesothelioma - (first post)

Hello, Martin85, we are a year on from you, and although my Dad is no longer with us, we can share some ideas and processes that we found helped. It is very frustrating and we were exactly where you are: got the diagnosis .... what now??

The Oncologist needs to refer you to MacMillan, and the GP should refer to the District Nurses. Obviously different services in different parts of the country, but you need both services. We thought MacMillan were more hands on, but found that they were really just advisory and the District Nursing service were the ones who really supported us. 

We have lots of tips, ideas and experiences if you would like any of these.

Feeling your frustration and pain.

Catriona xx

Hi Catriona, thank you very much for your response and I'm so sorry about your Dad. I hope you are doing ok.

The only thing we have been getting so far really is the district nurses coming in to dress his bedsore. They have been great with advice on that and some other things but absolutely would love it if you could share anything that helped you with this. Any tips/ideas would be very welcome. 

Did your Dad ever suffer with abdominal pain/pressure? lack of appetite? 

so appreciative of any info you can provide,

Martin xx

Hi Martin, yes, lack of appetite was really the first thing that alerted us, along with weight loss. Then the nausea, all of the time, it was really debilitating. The pain / pressure came quite far down the line. 

He had a craving for grapefruit, avocado with vinaigrette,  rollmop herring and kippers!!! Odd that it was the sharp acidic fluids he wanted. And especially in the middle of the night. We just went with it, whatever, whenever. And hot tea, it had to be almost boiling. 

Thr GPs were a bit slow to prescribe anti sickness meds, there are several different ones available, we eventually found that Cyclizine worked where the others didn't. 

Do you have a Mesothelioma specialist nurse? You should have, and they can refer to MacMillan. Once MacMillan are on board, it should be easier to navigate. Especially when the time comes for a hospital bed, equipment etc. 

Our family all pulled together to make a ghastly situation more manageable, do you have good family support? 

I'll try and think of more tips to share. 

Wishing you all the best.

Catriona x

Hi Catriona, 

Today and tonight has been a bit of a struggle. I called the district nurses to check him over and the pain in his abdomen was due to severe constipation which they gave him something for but the effort and exertion that he had to go through for that really took it out of him today. 

The lack of appetite is still there and he is losing weight all the time that is concerning me. But what to do? I can't force him to eat if he doesn't want to. Soup and nutrient drinks seems to be the only thing that he can stomach just now. Did your dad's cravings come back after his loss of appetite? He hasn't got any nausea symptoms just now which is good.

I have the best family support and we are all pulling together to stay overnight and be with him during the day. Not sure about a specialist nurse but we should ask. I think it may be time to think about palliative care but I'm not sure what that may involve or where to start. Just praying he has a good night tonight and manages to get some rest but mornings are the worst time also.

Thanks Catriona, really appreciate your input. x

Hi Martin, things changed for us when we asked / insisted that the GP came to visit, told him that Dad had had enough and that we felt that there was no guidance or direction given to us. 

All of a sudden, the palliative care team were in touch ( which was mostly the District nurses) under the guidance of MacMillan and GP for prescribing.

I totally understand the small ups and big downs. Mesothelioma really is very cruel. 

Great you've got good family support, it's so valuable. 

X

How did things change for you when you did that? Was it for the better? I'm thinking we might have to do that exact same thing in the next few days....if not tomorrow. x

Hi there, 

My Dad has Mesothelioma, he was diagnosed in January. In our experience the official diagnosis triggered a specialist respiratory team to coordinate care and they triggered the palliative care  immediately. The palliative team are brought in even if the patient isn’t at end of life stage so you should be able to engage them now and they’ll advise on nutrition, organise pain relief and give you pointers for occupational assessments.

Some teams are set up differently so maybe it’s a different process in your area but the resources should be there. I’m trying to figure out if our palliative team are MacMillan, it’s not very clear. 

Dad had lost his appetite and is severely constipated. He’s on these nutrition shakes twice a day which really help and he likes lindor chocolates so we make sure there’s boxes of those about the house. He’ll eat if we put food in front of him but it’s tiny portions and he never wants it. For the constipation he’s on a laxative he takes twice a day and after 3 weeks he’s started to get more comfortable. it’s a horrible and frustrating thing to deal with. Dad’s memory had degraded recently so he forgets to eat. When we ask him he’ll always say he’s eaten but that could mean he remembers eating something at somepoint in the past week. 

it’s turning into a tough ride. All the best x

Hi Catlac 

Sorry for jumping on the thread too. I am so sorry to read about your dad. Can I ask how long your dad’s battle was with the cancer?. My dad was diagnosed last week after the biopsy and although his appetite is not great he is still eating meals more out of habit than hunger tbh. They have told him he is stage 2-3 although stages in this cancer they say are irrelevant as it moves so quickly. He has been offered immunotherapy every 3 weeks for 2 years. 

Was told 18 months to 2 years expectancy. He is 73. Were there any food groups you were given tips for that helped 

Hi Martin 85, 

So sorry to read about your dad! My dad too has mesothelioma stage 2-3. Starts immunotherapy next week for 2 years ( every 3 weeks) it’s such an intensive regimen we were in utter shock. Has your dad been having immunotherapy too? When was your dad diagnosed. When the doctor said how rare the cancer is it makes it all the more crueler. Hope you have good support. I am a mother ( single I should add of 2 very young children aged 2 and 4 it’s hit me hard . Best wishes 

Hello Elaine,

Firstly I apologise for the delayed response. Unfortunately my Dad passed away in June and I haven't really been on here since. I only just discovered a notification from the forum.

I am very sorry to hear about your Dad's diagnosis and I hope he isn't feeling too badly. I don't want to scare you but my dad was diagnosed in April and it was only 2 months later when he very sadly passed away. He had however been in quite bad health for a number of years that on hindsight was probably to do with the mesothelioma that hadn't been discovered yet. My Dad never had immunotherapy and we weren't told of any stages but it was obviously very late by the time we had received the diagnosis.

I hope your Dad's treatment goes well and that he has a good response to it. Please don't hesitate to ask any more questions if I can be of any more help. I also hope you have good family and friends around you. My best wishes to you. Martin