Mesothelioma

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

Rapid decrease in health

Mandg42
Posted by

My Dad used to be such a vibrant full of life man, always down his allotment digging the whole thing by hand in his 70’s up until June this year at 77 years old. He began feeling unwell in June and he literally had his diagnosis a couple of weeks ago, they first diagnosed him with prostate cancer then lung cancer but finally deciding on mesothelioma. He’s just a shell of my dad now and has lost so much weight, I’m unsure if it’s down to the meso or the huge amounts of morphine he is on, I’m wondering if there’s any other drugs that they would use that doesn’t make them so tired and confused?? He talks nonsense sometimes too I don’t know if he’s hallucinating.  He’s going to Sheffield next week for a weeks worth of radiotherapy for pain relief, hope it works.

The doctor told my brother he has 9-12 months but we are thinking most probably less, my poor mum is in her 80’s and has been doing this on her own as we live 200 miles away and my brother in turkey, the district nurse cane to evaluate what Care they need. Has anyone been referred for help from the Marie Curie night sitters?

I’m so sorry that everyone is going through these horrible times

i cannot believe this is happening I’m so thankful for my children as they keep me focused on something other than sadness

Johnty
Posted by

Dear mandg42, I am so sorry to hear of the circumstances you and your dad find yourself in, it’s a heartbreaking situation. You mention your dad is taking a lot of morphine, in my experience this can lead to confusion. Hopefully the radiotherapy will mean that his dosage can be reduced. I attend my local hospice, they can help with pain relief, relaxation therapy, offer emotional support and friendship, we even have a garden where patients can potter around. As with all these things your dads general practitioner is the best place to get referred as he has all the local contacts. My husband has also received help from the hospice, they take care of the whole family. 

Overnight nursing care from Marie Curie  

Marie Curie specialises in care for people living with a terminal illness. A Marie Curie Healthcare Assistant or Nurse may be able to visit to take care of your friend or family member. They can help by giving medication for symptoms, giving emotional support and letting you have a chance to get some rest. This kind of care is not an emergency service and is usually organised in advance. It's not available in all areas of the UK – ask your GP or nurse whether the Marie Curie nursing service is available in your area and whether they can organise it for you. 

Marie Curie also has rapid response service available in some areas. If there is one in your area, the district nurse or GP may arrange for them to visit. They may come your home and give medications. If a rapid response team operates in your area, they may give you their contact number.

best wishes

jane

 “ A trouble shared is a trouble halved “
AprilTS
Posted by

Dear mandy

I'm so glad to see you've received a reply to your post yesterday with some very useful advice. I wanted to reply to you but just couldn't think what to say. I'm in a similar position as my 85yr old dad was diagnosed with Mesothelioma a couple of months ago. He has been losing weight for the last year and getting very depressed. He neglected himself to the point where he collapsed and during the investigations they discovered the cancer. The haven't offered any active treatment because of his age and frailty, just palliative care. He has early dementia and gets confused and forgetful and doesn't seem to have become any worse because of the morphine. He gets quite bad pain but it's hard to tell how much is from the cancer and how much from his existing arthritis which has caused him back pain for years. I didn't know radiotherapy could be helpful and will bear this in mind if his pain gets worse.

He can get himself washed and dressed and get his own meals but lacks motivation and feels he should not have been discharged from hospital. If he feels neglected he calls an ambulance and gets taken to hospital and this is becoming a real problem. Social services and the health service assess that he doesn't meet the criteria for a care home as all his needs can be met at home, but it just isn't working because he doesn't help himself. 

We are 4 daughters who all have busy lives and some of us live a long distance away. It is so stressful as we all hate seeing him in pain, but our efforts to help are not working.

I feel great sympathy for your situation, torn between your parents needs and your own family life by this horrible disease.

April

Happily retired animal lover
Mandg42
Posted by

Thanks for your reply johnty, I’m not sure how he would react to the word hospice although what they do sounds amazing!

I will definitely keep it in mind, the district nurse is calling tomorrow to let them know what help they will receive, my mum definitely needs at least a few nights help otherwise she will end up in hospital but we will wait and see what they say.

Mandg42
Posted by

Hi April,

what a nightmare your poor Dad is going through, I don’t understand their thinking sometimes. How bad does it need to get before he’s offered the proper care

Im hoping that the radiotherapy does reduce his need for morphine, it’s a godsend pain wise but turns him into a complete non responsive state. Maybe mention it to your Dads nurse and see what they can do?

I have asked my parents for so long to move closer to us and he said today he wishes he had, I hope your Dad receives the help he greatly needs and soon

mand 

AprilTS
Posted by

Thank you Mand

Dad is back in hospital after a fall and feeling better after a bit of tlc and a small increase in morphine. A flat has become available in supported living and we are so hoping he will be allocated it. He's worried about the upheaval of moving but I think he would be so much happier with a warden on site and social activities to go to. Then perhaps he'll be able to enjoy a better quality of life for however long he's got left.

I'm glad things are looking a tiny bit more positive for your parents at the moment. Hope the radiotherapy is effective, and relieves his pain, at least to some extent.

April

Happily retired animal lover
Mandg42
Posted by

How is your Dad now love? Is he out of hospital yet?

My dad was due to start treatment Monday and was on patient transfer when they radioed to say he wouldn’t be seen so they were brought hone, that afternoon the hospital called saying that they should have been at hospital that day!!

Anyway he had first treatment today which he said didn’t seem to bad, he was tired and confused today though after having a fair few good days 

AprilTS
Posted by

Hi

He's still in hospital but not doing too badly. They are giving him some physio and trying to build his strength back up with regular meals and drinks. 

How frustrating to have that mix up on Monday but at least he's had his first treatment today. Hope he doesn't develop nasty after effects to bring him down.

April

Happily retired animal lover
Mandg42
Posted by

Sometimes the hospital is the best place for us April to get the intensive care we need, I hope he will be feeling a bit better soon!

My Dad was so confused today and kept saying he was worried we all did our best to try and make him feel calm, the nurses have come in tonight for the first time tonight too and he seems to like them so that’s a bonus.

My mum walked in on him today taking to my brother who he said was sat on the sofa but my brother lives in turkey  I’m guessing it’s the tiredness and morphine.

mand 

AprilTS
Posted by

Hi

I'm sorry to say that my dad's illness seems to be progressing quite fast. He went back into hospital yesterday after a fall and at last a doctor looked at his leg which he has been saying feels odd for several days now. He's also developed foot drop. Sadly they think his cancer has moved into the spine and is placing pressure on the nerves, causing the foot symptoms. They are trying to arrange an urgent ct scan but as usual it's taking time to arrange. In the meantime he is going to stay in hospital and they are going to organise a family meeting once the results are available to agree the way forward. They still can't /won't give a prognosis but I feel things might progress quite quickly now.

Has anyone else known cancer to spread into the spine? What happens after that?

April

Happily retired animal lover
hurtandconfused981
Posted by

Hi,

I knew I'd read these figures somewhere before but:

"Metastatic Pleural Mesothelioma

For many years, doctors considered pleural mesothelioma a localized disease with limited ability to metastasize to other parts of the body. However, a 2012 postmortem study of 318 mesothelioma patients from Australia and England revealed that 55.4% of them had metastases to distant sites.

A similar review of 172 people who died of pleural mesothelioma found that the most common sites for mesothelioma metastasis include:

  • Liver (55.9%)
  • Adrenal glands (31.3%)
  • Kidneys (30.1%)
  • The opposite lung (26.8%)

Cancer spread to the brain and central nervous system is significantly rarer, occurring in only about 3% of postmortem cases.

In stage 4, pleural mesothelioma metastasizes to distant sites in more than 10% of cases."

Source: https://www.asbestos.com/mesothelioma/metastasis/

--

As for what happens after cancer spreads to the spine... From what I know it's not a good sign. However, I don't know what it means for survival rates.

Mandg42
Posted by

Oh April  I hate what is happening to our loved ones. I can’t imagine how they feel going through these cruel times.

i spoke to my dad today, he’s had 4 days of radiotherapy last one on Monday next week. He actually said to me today that he can’t go in with this pain and that he would put himself on train tracks, my Dad has never been one to complain so I know he’s suffering so badly.

we are going up there tomorrow, I’m looking forward to being with them and helping but I’m a little worried how my kids will take it with their grandad being so sick and not himself, he used to run aound after them, tickle them and throw them about  

I don’t get why they can’t give you a prognosis, we were told 9-12 months but I don’t see that tbh

mand

AprilTS
Posted by

Hi

Thanks for posting up the link and explaining the most common sites for it to spread. Until dad has the scan it's only suspected to have spread to his spine, but his symptoms are very suggestive and I'm going with that unless proved wrong. I've never been completely convinced that it is Mesothelioma anyway as they haven't done a biopsy. Maybe it's a different form of lung cancer. As long as his symptoms are treated appropriately, what does it matter anyway.

Amazingly as long as his pain is kept under control, and he has company, dad is really quite cheerful and some people might be shocked by the black humour we've been exchanging regarding funerals, spending money to make sure the government don't get their hands on it etc. He is probably going to move in with me at Christmas and stay until the end, so any tips on equipment to get, care to arrange and the best way to support him would be very welcome.

April

Happily retired animal lover
AprilTS
Posted by

Hi mand

How dreadful that your dad is in so much pain. That's the one thing I dread for my dad. How much morphine is he taking? My dad's has been increased several times since he started taking it. He takes two slow release tablets every 12 hours plus 2.5ml of Oramorph every two hours which is working well at the moment. He did have issues with the ward staff who would only let him have it 4 hourly and I'm afraid I was quite assertive and said I was going to take it further. Lo and behold, when I took in the written evidence this morning they told me they had sorted it out and were now giving it 2 hourly. I think they probably spoke to the hospice staff, who authorised it.

April

Happily retired animal lover
Mandg42
Posted by

Hi April,

im glad to hear that your dad isn’t in too much pain! It will be  My dad is on 60mg slow release morning and night and oramorph in day I think he takes 5ml each time but not sure how many times a day with paracetamol to top that up.  I’m worried about him being in hospital, I’m worried that he’s not going to get the care he needs.

He had a fall yesterday morning took the ambulance nearly three hours to come out!  They did a ct scan as he’s on blood thinners and informed my mum that the cancer has spread to his brain, we are unbelievably devastated, my mum is just in shock. Luckily we were due to come up that morning so I’m hear till Saturday and then my brother is coming back.

We really don’t want my dad to know it has spread because even with how poorly he is he still has hope, I don’t think he will after that news. Legally they have to tell him if he asks though awful times ahead

mand