mum newly diagnosed

[hannie]

My mother has just been diagnosed abt 6 weeks of back ache.

It been confirmed by ct scan through the multi agency team.

Next step is biopsy of the liver as they feel it spread to the liver.

Hopefully we will have an appointment soon and then wait for confirmation of what type and then know what treatment.

I've joined here as I feel the only way am going to help my mother is knowing what other people have been through.

Do I need to pushy with gp and hospital?

any advice on eating? What should I be asking? Thanks Hannie

[Guest]

Hi Hannie,

Sorry that you are here, but we are all really lovely and helpful. I am sure you will find this forum a comfort.

My dad was diagnosed last February with spread to his liver.

I bought a notebook which I take everywhere with me. I have put in all dads appointments and contact numbers for literally everyone. I also write notes and questions that I need to ask at appointments. You will find that the hospital won't give information easily, they will only tell you the basic ' what you need to know'. I always want to know everything, so I can search it all later and see what it all really means. I suggest you write questions down, as I doubt you will remember when faced with the situation. Please do not be scared to ask the questions. It is your right and you will be pleased that you did.

If ever you are confused, scared, anxious about anything, then please post on here. Someone will have an answer or some help for you. There are two lovely nurses on here also, Jeni and Dianne, and they can help you.

Please also, chase appointments. Do not be scared to stand your mums ground. I used to be scared to speak to anyone, but now, I phone everyone and chase everything for my dad.

How is your mum with her toilet habits? Most pancreatic cancer patients take creon. Do you know about this?

Please post back, and take care.

Leila xx

[hannie]

Thanks for your reply Leila

I will definitely be getting a notebook as that sounds like a good idea. I regret not asking more questions when the consulting told us but when your in shock.

Going to see our Gp tomorrow and would like ask questions to him. He may not know much but I don't when this biopsy will be. Then the HPB nurse said we should claim for everything but right I have no idea how to even start.

At the moment my mum isn't going well she is passing urine but the other. She was given senna but she now refuses to take it .

I don't knw about creon so I've wrote that one down so I can ask about it tomorrow.

again thanks and it's good to know your not alone even in the awful circumstances.

[J_T]

Hello Hannie, sorry to hear about your mum's diagnosis.

I would try and get a Macmillan nurse on board. Ours was excellent and sorted out all the claims business and a blue badge for the car.

Hope your mum responds well to treatment.

Julia

[Sueoliver]

Hi Hannie welcome to this forum. I have found everyone really nice and helpful on here and you don't feel so alone. My mum was diagnosed in May and I have to say it is a hard journey! I always ask questions and have been known to even write my dr a letter when I'm not happy! Definitely gets results. My mum has a community nurse from the local hospice who helped with all the paperwork! Definitely ask about creon capsules as they are really important! Hopefully you will get answers when you see the oncologist and things will seem clearer. If you don't understand something ask them to explain. Good luck with the appointments . Take care. Sue x

[sandraW]

Hi Hannie,

Welcome to the forum, nothing much to add to what the other lovely forum members have said. Unless you are very lucky your GP will know very little about PC, definitely get some help with the paperwork, we luckily were referred to the Macmillan health centre at our oncology unit, and everything was sorted for us. I hope your Mum gets her appointment soon take care sandrax

[PCUK Nurse Jeni]

Hello Hannie,

And thank you to all our brilliant forum members for answering.

My name is Jeni, and I am one of the nurses here at PCUK. I would agree with all the others have said - ask plenty of questions, and make sure that when you get answers, that you understand them and they are in a format which a non-medically trained person can understand. If there is anything you are unsure of, please do feel free to email us at support@pancreaticcancer.org.uk and we would be happy to help.

Certainly do get your mum assessed for Pancreatic Enzyme insufficiency, common in 90-95% of sufferers. This is what the others refer to as taking creon - creon is replacement enzymes which your mum should take with every meal or snack she has (apart from fruit and a few other things).

Kind regards,

Jeni.

Support Team.

[rsk1974]

Im sorry to hear your news, I only found this forum after my dad passed away, I wish I had found it before especially with all the questions I had!

[Guest]

Hi Hannie,

I would advise you not to mention creon to your GP, I would wait until you see the oncologist. At the beginning of diagnosis, my dad mentioned creon to his GP, who told him to have one a day. That is total rubbish, and it took me a lot of hardwork, and heartache, to make dad believe otherwise. Creon is not a medication, it is an enzyme amd therefore your mum can take as many as she requires.

Leila xx