Rapid decrease in health

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.

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

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.

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 

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

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 

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

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 

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

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/

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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.