Can anyone help me help my mum? ANY advice welcome

[cheshire_cat]

Hi -- I'm looking after my mum who was diagnosed with pancreatic cancer last month. She was ill last summer but the hospital insisted it was food poisoning. She lost weight at the time and never really put it back on again. Then in January she became very jaundiced and was sent for a scan, which revealed pancreatic cancer. The tumour is big but we found out on Friday that it is operable. The surgeons are going to operate in two weeks time as mum is still jaundiced and it is too dangerous to operate until it has cleared more. She had a stent put in about three weeks ago. I have managed to get leave from my job to look after her.

The biggest problem at the moment is that she has now lost two stone and was very slim to start with. She is losing weight all the time despite managing to eat relatively ok considering what she's going through -- small frequent meals -- and drinking three Ensure drinks a day. I am desperate for her not to lose any more weight before the operation and, although the overall medical care she has received SINCE the correct diagnosis was made has been very good, the weak point is the dieticians. They have given us hardly any advice at all and come up with very few suggestions. Mum cannot cope with any food with fat in it which makes it really hard. Does anyone out there have any tips or ideas? I am open to ANY advice. I would do anything for my mum. She is my best friend, a part of me. She is keeping her spirits up and doing her best but it is unbearable watching her just get thinner and thinner and I feel there MUST be something more I can do.

Please please help if you can.

Thank you very much

[Ellie]

Hi

Very sorry to hear what you and your mum are going through. All of us on here will know what you are going through - the pain, the worry, the sheer panic at times, so this site really is wonderful to help out practically and emotionally.

A lot of people with pancreatic cancer take Creon capsules, which are enzymes to help break down the fat in the body. You will need some proper medical advice but it is worth chasing someone up to ask if Creon would help at this stage. At least you will feel you are doing something positive to help right now.

Hopefully, one of the nurses from PCUK will write and advise you about this, but in the meantime, try checking with the hospital or your doctor.

Best wishes

Ellie

[PCUK Nurse Jeni]

Hi There,

Sorry to hear about your mum.

Ellie referred to a PCUK nurse -I am she!

Ellie is absolutely correct re.CREON -it is a given that she should be on these at the very least. You would be able to discuss this with the dieticians.It is typical of Pancreatic cancer, as it causes an insufficiency in the enzyme production. Therefore, there is not enough available to digest food, especially fat. So eventhough the patient appears to be eating well, they continue to lose weight.Unfortunately, the operation will bring with it weight loss also, so it is good that you are aiming to build your mum up before this.

Please email me at support@pancreaticcancer.org.uk should you need any further advice.

KR,

Jeni.

[LittleMissOptimistic]

Dearest,

my thoughts are with you, stay strong.

My mother took Creon too. I am no expert either.

She had seen a dietitian too, she was diabetic after Whipple's op,

could your mother have olive oil?

A few teaspoons now and again?

Best,

Ella

[cheshire_cat]

Thanks very much for the replies. I really appreciate it. Mum is now managing to take the Creon. She only started yesterday. The pancreatic nurse at the hospital said it may have been because the jaundice was so bad that she couldn't tolerate it before. I don't know if I will be able to persuade her to have any olive oil. She is in so much pain when she has food with fat in it -- but I will try. Maybe now the Creon will help with that. It's at least a good sign that she's taking it.

Things generally are becoming more difficult though. Mum has been in quite a lot of pain and it is clearly getting worse. The painkillers she is taking do not seem to be strong enough. The Macmillan nurse assigned to mum is away and the other nurses just said they couldn't help and I must ring the GP. The GP is calling back after his surgery this afternoon. It is so difficult to see mum suffering like this. I feel sure there must be a better way of controlling it and don't understand why more isn't being done to help with this. This is such a hideous, awful illness. I have been looking after mum now for six weeks and for the first time in the past couple of days I am beginning to struggle myself. I know I have to find the strength to keep going -- and I will -- but it is so exhausting. Every day there is a new medical problem, a new dietary development and I simply don't have the medical knowledge to know what to do. I am a journalist and have interviewed many 'carers' over the years but only now do I fully appreciate what it actually means.

I am doing everything I can think of. But I just want my mum back.

[PCUK Nurse Jeni]

Hi,

I will reply to you via email regarding pain relief.

Kr,

Jeni.