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Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

My mum has just been diagnosed

Postby Catherine » Tue Nov 27, 2012 9:15 pm

Hello everyone

Posting on here seems mighty strange and it makes things so real.

My mum was diagnosed 3 weeks ago, after going to her GP suffering from jaundice and then being admitted to our local hospital a week later. They were useless, they told her she had a tumor but not where. By a stroke of luck she was transfered to our regional cancer centre 4 days after this news was given as her bilirubin levels were at a dangerous level and needed interevention. This was lucky as neither her consultant or the consultant who was standing in for him were at work and couldn't do the procedure. Otherwise we were being given a Macmillan nurse and nothing else.

My mum has been quite poorly since then, but the care she has received has been excellent. She has taken the decision not to have surgery, she has a number of health conditions (diabetes and rhumertoid arthritis) which would mean a much longer recovery time and has been so weak and poorly due to her bilirubin levels - they were 400 and have just come down to 90. So she does not see surgery as an option for her at the moment.

Tomorrow she is having a metal stent put in to make her feel a bit better, she has a drain at the moment, and then she is hoping to come home and go for chemo. Whilst we are obviously devastated she does not want surgery at the moment we are positive in that it hasn't spread outside of the pancreas. Also we have to respect my mothers decision as she would like some quality of life for the time being at least.

I feel so sad at the diagnosis, prognosis and reading everyone else's posts on here. It seems such a hopeless situation. Although I want to keep as positive as I can for my mum and rest of the family.

Any advice would be appreciated, 5 weeks ago I had not heard much about pancreatic cancer and now it has taken over my world.

Many thanks Catherine x

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: My mum has just been diagnosed

Postby laura » Tue Nov 27, 2012 10:29 pm

hi catherine, hope we your new friends can be some comfort to you when needed.
yes, to be given a diagnosis is heartbreaking and we all immediately fear the worst possible outcome.

there are sooo many scenarios, every one is different,each person reacts, accepts, challenges, involves themselves in the way they are most comfortable.

your mum should feel better when the stent is in and working, jaundice makes you feel so ill,

have a notepad and write down your questions, take it with you when you/mum has a consultation, ask ask ask, then push push push for treatment, always polite, always firm.

if you click on my name you will be able to read my hubbys journey, now 2yrs 9mths.

take care of you and mum, you are going to need to be strong, no doubt about it, but you will be ok,im sure.

ask away if you need more info, someone on here will have the answer, also you can always phone the helpline where you will get so much help. love laura x

dabber66
Posts: 36
Joined: Tue Nov 20, 2012 9:39 am

Re: My mum has just been diagnosed

Postby dabber66 » Tue Nov 27, 2012 10:44 pm

Hello Catherine, so sorry, think I can understand how frustrated you must feel, your mum is so lucky to have you. I am not experienced to give you any advice, but support by the bucketful! my diagnosis was swift, my GP sent me to one of the specialist pancreatic hospitals, with a brilliant team in place. You do not say how old your mum is, I am no youngster, you do need to be reasonably fit to undergo major surgery. You can checkout the hospitals on the internet, think they may be listed on this site - not sure, will check. Has your mum had any scans. In the meantime, sure you will find help from members of this forum, as I have done. My operation was only just over four weeks ago. Carole.

Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: My mum has just been diagnosed

Postby Catherine » Tue Nov 27, 2012 11:36 pm

Hello Laura and Carole,

Thank you for replying. Laura your husbands story is truly inspirational, it's given me some hope.

Carole I am so sorry that you are on the journey, and am pleased you have had surgery. I wish you all the best for the future.

My mum is currently in a specialist centre, her consultant is brilliant. We couldn't ask for any more. Even now he is not prepared to give up. The care she has had in there has been fantastic too, even down to the ward caterer who ran around the hospital when my mum fancied some cucumber. I really can't fault them.

Mum has had a CT scan, MRI on her liver and an endoscopy. These have shown the tumor but no spread. She is only 64 which seems so young now. To be honest I have been more than slightly relieved since surgery is more remote - I'd been having nightmares where the surgeon was coming out of theatre with tears in his eyes!! And oddly I feel more positive about things now.

Also I think mum has been quite lucky to be where she is, I have read so many posts about people not having creon etc. My mum already has that and something else beginning with T to help with her weight loss. So I am grateful for that.

She is hoping to come home within the next couple of weeks and I know we need to be prepared. We want her to have as many nice times as possible and be as well as she can, she is quite positive.

But the diagnosis is devastating nevertheless and it seems so unfair. She is having biopsy's taken tomorrow so we should know what we are dealing with more after then and we can have a list of questions for when she see's the oncologist. I am also hoping to meet with her consultant later on this week to speak to him about the tumor. I don't feel we know enough about it and want to have a picture of it in my mind to wish it ill!!

Thank you again for your replies it's nice to know people are out there.

Catherine x

dabber66
Posts: 36
Joined: Tue Nov 20, 2012 9:39 am

Re: My mum has just been diagnosed

Postby dabber66 » Wed Nov 28, 2012 8:21 am

Hi Catherine, well, you seem more positive, I too find great comfort, being able to 'talk' to other people, who are or have been on the same journey as myself. Glad your mum is having a biopsy today, at least they will find out what sort of tumour it is - I went on the have two Octreoscans after my biopsy - what a wonderful machine that is!!! Hope you will let us all know how you and your mum get on, and again, she is so lucky to have you. I find my brain is still not quite in gear yet, hope it is due to the anaesthetic, my fingers seem ahead of my brain, so excuse any spelling etc.!!! take care, Carole.

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: My mum has just been diagnosed

Postby louiepc » Wed Nov 28, 2012 1:55 pm

Hi Catherine

Welcome to the forum and your new on-line friends. I am sorry it's through such horrible circumstances that we are meeting, please use this forum to ask questions, rant or just for chat. We all need somewhere to go to let off steam, and on here is a great place, lots of lovely people who are sadly all in the same boat, some a bit further along than others, and some taking a similar journey but on a slightly different course.

My mum, who has sadly gone, was diagnosed last year, sadly for her, it had spread to 2 lymph nodes, so surgery wasn't even an option. She did have 4 sessions of chemo, but unfortunately in her case, the tumour was very rapid.

There are plenty of people on here, Laura's husbands story for instance, where people have been diagnosed and thankfully are still with us. Everyone is different.

I would say, if your mum has the option of surgery, and she is fit enough for the recovery, please don't discount it.

Good luck hun

love louie xxx

Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: My mum has just been diagnosed

Postby Catherine » Wed Nov 28, 2012 5:21 pm

Hello Carole, how are you feeling today? Please don't apologise for spelling. I haven't had major surgery and my spelling is useless. In fact my mum always laughs that I did some English at uni when my basics are so poor! What are Octreoscans? They sound quite exciting, we haven't had one of those yet.

Louie, I am so sorry for your loss. It is such a horrible diesease, it must have been awful for you. It is lovely of you that you are coming on here and offering support to others - thank you so much.

My mum had her metal stent fitted today and biopsy's taken. She was in a bit of pain when I saw her this afternoon and was dry as she hadn't had a drink since the early hours. My dad and I met with the pancreatic specialist nurse, saw the physiotherapist and arranged for an occupational therapy referral for things like the bath (mum came home twice for one and got stuck both times). I am finding myself grateful that such people exist, I want my mum to have as many nice experiences as possible, even if that is just having a bath. Little things and all of that.

Mum is still adamant that she will not have surgery at the moment, I think it would take such a long time to build her strength up and her kidneys and liver failed last week - although they are fine now as her billirunin is more normal. We have to respect her decision no matter what that is and do our best for her. It may change in the future - the jaundice has knocked her for 6. Although we will have to dance to the tumors tune!

On a positive there is talk of her coming home next week which will be nice, though we will have to keep her in check with her eating (she didn't eat properly before this so it might be quite difficult to get the necessary calories into her).

Thank you again for your support, it is really good to have a place to let off steam to people who understand.

Catherine xxx

dabber66
Posts: 36
Joined: Tue Nov 20, 2012 9:39 am

Re: My mum has just been diagnosed

Postby dabber66 » Wed Nov 28, 2012 8:55 pm

Hello Catherine, well, good days and bad days, everyone says I certainly look better and sound better - just downloaded a booklet from this site today -' diet and pancreatic cancer' - a very good publication indeed, very informative, and makes me realise all the things I suffer from regarding what I eat, is quite normal - and being able to discuss things on this great forum, really helps so much, as well. Octreoscan, well, it is an imaging technique used to identify the location of the tumour, and see whether it has spread to other parts of the body, think it is a very accurate machine - there is also a PET scanner, but my hospital will not have one of these machines until early next year - they are a very expensive machine, and not many hospitals have one. Your mum seems to be in very good hands indeed. Think you will know better when you get the biopsy results - dont give up - my news was bad until I had the biopsy and octreoscans. Carole xx :) :)

Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: My mum has just been diagnosed

Postby Catherine » Wed Nov 28, 2012 10:15 pm

Hello Carole, I'm glad that you are looking and sounding better - it makes a difference to how you feel about yourself. It sounds like you are doing well really, it is still very early days for such a huge operation. You should be congratulating yourself. Although I'm sure it must be frustrating on the bad days. Keep your chin up, I am sure you will get there.

I've read some of the booklets on the site, they are so useful aren't they? I've tried to gather as much information as I can so that I can help my mum. I thought the diet one was really useful about getting hidden calories in. My mum came home for a weekend a couple of weeks ago and I used all the tricks I could, I even made her fresh custard as it was quite light and fairly high in calories.

We get mums biopsy results a week on Friday, so far all the tests she has had show there is no spread which is really good news. I am hoping we can keep it that way. They did say though that if the results of the biopsy were inconclusive then they would do further tests so maybe they will bring out a magic scanner. We are all quite positive about her treatment at the moment and I will never give up hope.

I really can't fault the care she has had during her stay at the specialist centre, she's been in hospital for nearly 6 weeks now. The first 11 days were in our local hospital and the difference in standards was frightening!

I hope that tomorrow is a 'good' day for you. It has helped me already to be on here so thank you again.

Catherine xxx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: My mum has just been diagnosed

Postby laura » Wed Nov 28, 2012 11:22 pm

hi catherine, re calories, ensure extra, which you can get prescribed, various flavours, contain all the calories etc you need, she could virtually live off them but use them as well as food, add butter, cream etc to potatoes, custard, and anything else you think off, but the ensure should really help cheers, laura.xx

Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: My mum has just been diagnosed

Postby Catherine » Wed Nov 28, 2012 11:58 pm

Hi Laura, thank you for that. She has been prescribed fortisip but only has one a day she is quite stubborn for a woman who used to make me a sandwich every time she saw me because she said I was too thin!!! I will ask about ensure tomorrow thank you. How are you and your husband, I have told my mum your story and it has given her hope and more determination.

Catherine xxx

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: My mum has just been diagnosed

Postby Sammy-Lou » Thu Nov 29, 2012 11:03 am

Hi Catherine,
Sorry to have to welcome you to this forum but you will find it a wonderful extended family and I hope that you get the support and comfort so many of us have on here!
Sorry to hear of your mum's diagnosis, as the others have said each case is very different and please do take hope from some stories and all the advice you need from everyone or the support team.
I was going to suggest ensure but see it has been suggested already, my mother-in-law has always been a terrible eater, more concerned about flapping round everyone else offering everything in her cupboards every few minutes from the moment we step foot in her house til the moment we leave whist she just says "Oh not for me, I had a massive breakfast" which would actually be 2 slices of toast and a fried egg 6 hours ago! We have found that although she still won't have many ensure drinks she was having one a day up until last week so at least that was something, on days were she is so nauseous she can't manage eating at all.
So glad to hear how good the specialist centre was and hope that your mum continues to receive such good care throughout.
Take care of yourself and don't forget that no matter how scary it is at times, there is a wonderful group of people here who will know what you are going through and will always be here to talk!
Sam x

PCUK Nurse Jeni
Posts: 1099
Joined: Mon Jun 14, 2010 1:30 pm

Re: My mum has just been diagnosed

Postby PCUK Nurse Jeni » Thu Nov 29, 2012 2:09 pm

Hi there,

Just to clear up something about Octreotide scans - these are only needed in certain circumstances, when neuro-endocrine tumours are suspected.

You can get a Neuro-Endocrine cancer in the pancreas (Steve Jobs had this). They are rarer, and can have different treatment pathways, especially if inoperable. The operation for this tumour type in the pancreas is the same as that for adenocarcinoma of the pancreas (the most common form).

So, Catherine, your mum probably does not need one of these.

Pleased to hear you are finding the booklets useful.

Kind regards,

Jeni.

Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: My mum has just been diagnosed

Postby Catherine » Thu Nov 29, 2012 10:22 pm

Hi Sam

Thank you for the welcome, it's not the best place to be is it? But everyone on here is so friendly kind and welcoming it really does feel 'homely' already. I think the thing I have taken from it so far is to take each day as it comes, and make the most of everything. How are things?

My mum is so stubborn with her eating, and always has been. She's already announced that she won't be eating as much at home as she is in hospital. She doesn't eat a great deal there so I've no idea what she is thinking of. Time will tell.

I didn't get to talk to the dietician today, I think she will be on the ward tomorrow, of course my mum has tried to discourage me from visiting but I'm having none of it. I will see what they say tomorrow. Your mother in law sounds a lot like my mum fussing around everyone else before herself.

Jenni, thanks for the clarification re scans. I am really hoping that my mum doesn't have to have any more tests. She was the best today I have seen her in 5 weeks, so I hope we can have some nice times before chemo.

Catherine xxx

PCUK Nurse Jeni
Posts: 1099
Joined: Mon Jun 14, 2010 1:30 pm

Re: My mum has just been diagnosed

Postby PCUK Nurse Jeni » Mon Dec 03, 2012 11:20 am

No problem Catherine.

Please do email us at support@pancreaticcancer.org.uk or phone us on (020) 3535 7090 should you have any further questions, or any questions in the future.

Kind regards,

Jeni.