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Extreme weakness, what do to?

Posted: Wed Dec 07, 2016 9:58 pm
by bubble
Hi, I wrote a post in June: http://forum.pancreaticcancer.org.uk/vi ... f=4&t=1784 and sorry I didn't write more then, but things hasn't changed much until last month. My mom had a huge pain around her liver, and her stool became white-ish. There was a biliary blockage which caused these, and doctors tried to put a stent in, but it didn't succeed because of the narrowing of the duodenum. So later they decided to do a biliary bypass surgery, which was successful, and took away that huge pain. During the procedure they took out a sample from the fundus of the gallbladder to make a biopsy out of it. The result confirmed malignancy, which the doctors already suspected. On the CT scan there are lesions in the liver which are possible metastases, but those haven't been biopsied though. My mother was sent to the Intensive care unit after the bypass surgery, and she was soon taken back to the normal section of the hospital. At first she couldn't stand up (wasn't even allowed to), and had tubes inserted in her. Two weeks later she was released home. One tube is still in her, which collects fluid from the stomach. She also has to take injections to avoid abdominal thrombosis and other two medicine. When she got home, she needed help to go up the stairs and to go to the bathroom, but now she can do these alone. But she has been extremely weak since the surgery, she can eat very little. Medidrink is prescirbed for her, which she's drinking, but even if doesn't seem to help much. Sometimes she feels something at her stomach, but most of the time she doesn't feel pain. The oncologist said they can't start treatment now, which I understand, but I wonder if she will get stronger eventually, or is it already close the final stadium? I mean, is her recent condition related more to the surgery or more to the tumor itself?
It's been 16 months since her very first symptoms, and 14 months since the first diagnosis. She hasn't been getting treatment yet, only a stent last year October. She is too weak for a chemotherapy now, but I wish she could start it as soon as possible. Actually, she was quite weak even before this surgery as she had some problems before in that area (cholangitis, liver abscesses), but she could do her things after all. Now she can walk little distances, but cannot do her normal activities. My question is how could we make her stronger now? I know probably she won't recover, but I still haven't lost my hope at least to extend her life. She means so much to me, and it makes me go crazy just not being able to do anything for the moment :( Any help appreciated.

Re: Extreme weakness, what do to?

Posted: Wed Dec 07, 2016 10:42 pm
by Marmalade
Dear Bubble,

I'm surprised you Mum has not had any treatment other than surgery as this usually goes hand in had but I suppose she has been too poorly to undergo chemo.

It is very hard to accept that people we love cannot be cured and that extending life is not always the most humane thing to do. As the song goes "sometimes love is holding on and sometimes, letting go" How does your Mum feel about the prospect of treatment? I think this has to be your starting point as she is the one who has to decide. If she wants to keep going as long as she can then you need to contact your GP and find out what the treatment plan is and give everyone a shake up. Ultimately your GP is responsible for her care even if it is being provided by specialists at the hospital. There will also be a hospital dietician who can help with diet advice or contact the nurses on here who are full of great ideas and advice.

If your Mum does not want to put herself through treatments (or even if she does) your GP needs to refer you to your local palliative care team, this may be via a hospice, these people have a wealth of knowledge for both Mum and the family and can help with techniques and strategies for keeping Mum comfortable and encouraging good nutrition. They often know what supplements to give and the best way to get calories down while controlling sugar levels. Our local hospice also ran courses for family carers dealing with fatigue, pain, nausea, diet, sleep etc. Perhaps yours does too ask the GP. I can recommend them as they deal with all aspects of the disease and end of life care. If you are able to access a course or the palliative care team it will give you more confidence and practical skills to support your Mum whatever her decision. It will also give your Mum someone she can speak to in confidence about her concerns or questions. having the palliative care team involved does not mean you or your Mum or the doctors have "given up" hospice teams are specialists and have a lot to offer.

Sorry I can't be more help, my husband hated all the food additives and supplements and could eat less and less anyway but in general the rule is give them whatever they want whenever they want it especially if it contains lots of carbs protein or sugar. Luckily my husband quite liked milk, cheese and eggs which is an easy way to get protein into them as ice-cream, custard, scrabbled egg, milky drinks etc… downside is that you may have to then deal with high blood sugar but there are pills for that if needs be. If they don't fancy food then try leaving little snack things on a plate, little squares of toast or cubes of cheese etc. sometimes they get tempted…


I do hope there is something that can be done if your Mum wants to keep going for a while. Get the GP motivated.

Best wishes,

Marmalade

Re: Extreme weakness, what do to?

Posted: Wed Dec 07, 2016 11:02 pm
by Justamo
Hello Bubble.

Marmalade has covered all the sensible advice and all I can add is that I am very concerned about you and hope that you will glean enough from the forum and our wonderful help line to enable you to deal with this and help your poor mum.

Don't forget that your own wellbeing is important too; you will need to be strong so take good care of yourself. I stupidly thought that the harder I worked to look after Peter then the better he would feel. Ridiculous really, but that's how it felt at the time.

Kind thoughts,
Love, Mo

Re: Extreme weakness, what do to?

Posted: Wed Dec 07, 2016 11:28 pm
by bubble
Thanks for the answers!
I read again my post, and maybe I wasn't clear enough: when I mentioned "surgery", I meant the biliary bypass surgery. My mother didn't have the Whipple procedure (the tumor is inoperable).
She said she would be happy if she could live one more year at least, but of course if it is a quantity life. I don't know if she'll get a bit better later, or it will worsen. She feels somewhat better than one month ago, and even if she continues to do so, maybe that still won't be enough for a chemotherapy.

Re: Extreme weakness, what do to?

Posted: Thu Dec 08, 2016 11:39 am
by Ruthus
Hello Bubble

I am so sorry about your mum and this horrid situation. Pancreatic Cancer is an evil disease and the sooner better diagnostic procedures and more effective treatments are found cannot come soon enough. It's terrible patients and families have to endure the suffering this disease brings. I think all have covered what I would also advise. There is excellent advice in what people have posted to you. I would just reiterate that if your mum is too weak chemo really may not be something she or the professionals want to pursue and her care may be best coordinated from the palliative care team. I have read some stories which praise the expertise of the palliative care teams and their excellent expertise and knowledge when it comes to things like weakness, nausea and control of symptoms.
All of this must be incredibly difficult for you and maybe accessing any support through your local hospice or specialist day care centers maybe useful. My family have been advised they can access counseling and support from a local cancer day Centre if they choose. They offer 1-1 counseling, informal groups where you can meet other carers and alternative therapies for relaxation.
Love Ruth X