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Jools
Posts: 2
Joined: Thu Feb 01, 2018 1:08 am

I am Struggling with Information

Postby Jools » Fri Feb 02, 2018 4:52 pm

Hi. This is my first post. Last October my Mum was diagnosed with a growth/tumor on her pancreas. She had lots of tests and scans but, whilst awaiting results etc. caught Sepsis and all treatment was obviously directed at that. After getting "better and stronger" she had a biopsy. I could not get her to say if the results showed cancer of the pancreas or not. She is now having yet more tests and now she tells me that the Whipple Procedure has been mentioned. Well, since pancreatic cancer was suspected back in October, I am struggling to understand why is is not receiving any treatment. My Mum will never give me a straight answer i.e. whether or not she has actually been TOLD she has cancer or not. Her response is "I don't need to be told I have cancer, I've known I had it all along".

This may sound cruel and insensitive but my Mum has been a raving hypochondriac for about 15 years and I have always said to the family, "one day she will be really ill and none of us are going to believe her - that's what comes of crying wolf". Well, she could be really ill but I am struggling to believe it to tell you the truth.

These are the facts as I know them :-

She definitely has a growth on her pancreas - it is not near all the difficult blood vessels and does not seem to be spreading - I know that much.

She went into hospital in October with jaundice and a stent was fitted. She then got Sepsis following the removal of same stent and replacement of a new one (due to infection).

She is now at home awaiting more tests (we are nearly 4 months down the line). She is 79 years old but definitely does not appear as other women of her age - either mentally or physically - she looks and acts much younger. My stepfather is caring for her - i.e. doing all the housework and cooking. He has given up his job (which he hated) to do this. He is 64 years old (they have been married for 40 years by the way). I am telling you this as it means I cannot speak directly to medical staff myself but have to try and piece together what is the position from the information they pass on to me themselves.

I just feel that I cannot sympathise in the way I should and feel so guilty. Does it normally take all these months for treatment to be commenced?

Christine49
Posts: 34
Joined: Wed Dec 27, 2017 3:35 am

Re: I am Struggling with Information

Postby Christine49 » Fri Feb 02, 2018 5:51 pm

Hi Jools, this is my first post replying to someone else rather than just coming here seeking help from the other (excellent) members here.

My mum has been diagnosed with PC (stage IV unfortunately) and we are incredibly close and I have been doing the majority of phone calls and with her at almost every appointment so far as my dad is hard of hearing (got fitted with hearing aids finally today!) so I can’t imagine how frustrating it must be for you to not have any information.

I don’t really have any advice for you, just wanted to welcome you. Perhaps you can speak to your step dad for some more information if mum herself is choosing not to go in to it all with you?

Jools
Posts: 2
Joined: Thu Feb 01, 2018 1:08 am

Re: I am Struggling with Information

Postby Jools » Sat Feb 03, 2018 8:11 am

Hi Christine. Thank you so much for your reply. Unlike you, my Mum and I have a strange relationship which doesn't help. I went to a Catholic Convent (boarder) from the age of 6 until 18 and stayed at my Grandmother's and Aunty's just about every holiday in that time. Consequently, I feel I hardly knew her growing up - knew the nuns better quite honestly. So now, this very distant relationship in my youth is proving to be a real hindrance.

She is a very strong, self-opinionated person and has had my stepfather totally under her thumb for all their married life. I have tried to talk to him about it but he only tells me what Mum wants him to say. It's always been like that over everything. I've never seen it to be a problem (quite funny actually) until now.

I am going to see her today with my sister, daughter and niece as it is her 79th birthday. I am going to take the opportunity to try and get to the bottom of it. With them with me I might have a better chance. They have tried to get information themselves but have been no more successful than me. We all feel totally in the dark. Perhaps together, face-to-face, we can get somewhere. I don't think I have ever felt as frustrated as I do right now and it is making me unsympathetic which then makes me feel guilty and so it goes on.

Thanks again.

Christine49
Posts: 34
Joined: Wed Dec 27, 2017 3:35 am

Re: I am Struggling with Information

Postby Christine49 » Sat Feb 03, 2018 10:16 pm

Hope you all had better luck with getting some information today but I guess if she doesn’t want to share what is happening then it’s up to her ultimately.

I guess it would help just having some idea exactly what her diagnosis is then you can do your own private research but as I have found there’s a fair bit of variation in the conditions and treatments and of course each individual in how/what is right for them.

Do you know if it was the pancreas itself that they took the biopsy from? From what I understand a Whipple procedure is a possibility when things haven’t spread but again there are different rules for that, depending on exactly where in the pancreas the problem is.

I would imagine your mum is quite scared and probably part of the reason she’s clamming up about it. Is there a chance she simply doesn’t know all the information? I know my own mum kind of ‘switches off’ when being told things she doesn’t want to hear from the doctors, hence I like to be with her at appointments where possible.