My mum has just been diagnosed

[Catherine]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.

[Catherine]

Thank you Jenni

My mum is coming home tomorrow, so I am sure I will be contacting the support team at some point. It all seems a bit overwhelming at the moment with so many things to sort out.

Catherine x

[Sammy-Lou]

Hi Catherine,

How is your mum doing? is she back home? Did you manage to speak to everyone you wanted to in the hospital?

Sam x

[Catherine]

Hi Sam,

My mum is coming home today. She is in good spirits and quite well as the stent appears to be working. She is looking forward to a poached egg on toast for her tea and spending time with her grandchildren later. She has invited everybody for tea - so we will see how that pans out. Mum says she'sonly eating the very best of everything so we have had a right merry dance finding the blue eggs she wanted along with everything else she needs / wants.

I spoke to various people at the hospital and we have lots of information from them. We've also asked for a Macmillan nurse to come and have a chat with us, I've spoken to her GP and arranged some other things she wanted too. I spoke to a nurse about creon again yesterday and she has been written up for a lower dose to have with snacks alongside her main dose. Apparently she wiill come out of hospital with a months supply of everything (we're hoping not fortisip as we will need a trailor to get 84 home)

We get her biopsy results on Friday following MDT (I am starting to dread that phrase) and she will get her oncology appointment then too, hopefully for next week. She has decided to have all of her treatment at the cancer centre hospital rather than our local one. Even though it's further away the care is much better and if she has to go in we would all feel happier that it is there.

So at the moment we seem to be doing ok, apart from I took the wrong clothes yesterday! But we're over that now (right ones re packed for this afternoon). For today at least we are all ok, my dad is worried about the future though and how he/we will all cope. He is 70 and it is hard for him in every way.

How are things with you? It's a strange time of year for such a horrid illness, not that there is a good time. I can't get a bit excited about Christmas. xx

[AnneD]

Hello Catherine,

I hope your mum has come home and is still in good spirits.

Yes it is hard to get excited about Christmas when you have such a lot to deal with.

Two years ago yesterday I had a Whipple and had already had a distal pancreatectomy eighteen months previously.

This left me without a pancreas and in need of Creon and insulin.

The surgeries were to remove tumours.

I came home before Christmas and pretty much sat in a chair and watched everyone do all the preparations and cooking.

Now I am about to have my third Christmas without a pancreas and life is good.

I am a year younger than your mum.

I don't know the full circumstances of your mum's illness and it will be different from mine but I'm just trying to say that if there is a possibility of surgery life can be very good afterwards.

Best wishes to you all,

Anne

[Sammy-Lou]

Hi Catherine,

How is your mum doing? How was the tea for everyone? Hope you all managed to have a nice time and not let this awful disease ruin the time together.

Hope you didn't need a van for the medicines, it's quite daunting isn't it, I can only advise to get it all organised at home so it's easy to access and keep track of what was taken and when.

You'll be in my thoughts tomorrow for the biopsy results. It's actually quite a positive point in

The journey because they will help with the decisions as to what is the correct combinations of treatment to best tackle the specific strain. There may be clinical trials your mum is suitable for if she wishes to try them along side the standard 'tried and tested' treatment plans. I after about the cancer centre as feel they know what they are dealing with and have so much experience although bottom line is it doesn't matter where she is treated as long as she is confident and happy, I think that goes a long way!

I know how worrying it is thinking about how it will impact on everyone else like your dad, I constantly worry about my husband but people on here gave good advice to look after yourself so you are able to cope and then you maybe able to support those you love as well, please don't feel like you have to hold it all together, that can be a huge stressful burden. Talking to people on here or even calling the support line or Macmillan can help give you strength and information so use what is available to you!

Take care and let me know how your mum gets on tomorrow!

Sam xx

[laura]

hi catherine, wondering how mum, and you! are doing, mum will probably feel very tired when first home, let us know, when you have time, wishing you all well

love laura xxx

[Catherine]

Hello lovely people,

My mum has been home since Tuesday afternoon, she was exhausted by Tuesday night and I had to shower her and put her to bed. But we had a lovely time, the whole family came round and most people had tea. She loved it and was really pleased to spend time with us all. Especially her grandchildren. She did get her poached egg on toast all be it a bit late in the day when she was in bed.

We have had a lovely couple of days, I am pleased with how well she is doing. She's been up and dressed both days and today there has been lots of visitors that my mum has really enjoyed. It's a shame it is so icy as she was hoping to go for a little walk each day to get some fresh air and hasn't been able to yet. She's done some on line shopping today (my mun hates computers and the internet) and ordered herself some new clothes.

Apart from a little bit of lingering pain from the stent procedure she has been quite well. She was also bloated but we got some rene's and that went away straight away. I was really pleased when she ate nearly a full chicken portion tonight and as I left to go home she was tucking into a magnum mini. I've let her off her fortijuice today as she has eaten more than me!!

So far so good, I am obsessed by food and have been starving for the entire time. It seems to be all we talk about. I'm making home made meat pie tomorrow as she said she fancied that. It's quite tiring getting everything she fancies when she wants it but we are managing at the moment. My dad is fussing and is even straining the water from the kettle before he makes her cups of tea. We are all quite tense about the biopsy results tomorrow and are really hoping they have taken enough and are sufficient. Mum has been through enough prodding.

Anne, I am pleased you are living a happy pancreas free life. Thank you for taking the time to share your story. I think my mum just can't face the surgery at the moment (she's had quite a lot of operations and none of them have gone smoothly). I find it hard to understand that something 2 cm x 18mm can cause so much havoc. My mum might change her mind if the blasted thing shrinks away from the vein, I am thinking of making a model of it and shaving bits off.

Sam, its nice to hear from you. How are you and your husband coping? We have a Macmillan nurse coming next week and I am thinking of asking more about creon - my mum is on 40,000 and I am thinking she might need a smaller dose for snacks. I'm also chasing up OT.

Laura, thank you for taking the time to ask. You are an inspiration to everyone and so very very kind.

Lots of love and good wishes

Catherine xxxxx

[Sammy-Lou]

Sorry it's been a while since I was on. So glad your mum and all the family managed a lovely get together, your mum sounds like a very determined and strong lady. How is she now?

How are you and your dad coping?

Do send me an update when you can!

Thinking of you and your family over christmas and sending my best wishes xx

[Catherine]

Hi Sam,

It's been a hectic couple of weeks since mum came home. We have had the Macmillan nurse, district nurse, OT imput and contact from the dietician. So far she is doing really well, she has been out and about most days and has enjoyed a family wedding and Christmas. Christmas morning was lovely, my daughter and I stayed Christmas Eve and my sister and her children came in the morning to open presents and have a family breakfast. Unfortunately I was struck down with the flu on Christmas day so I haven't been able to see her since. She has had a family party today and provided a buffet (my dad brought me some food)

My mum certainly is determined she's had her hair dyed pink and purple and has bought a whole new wardrobe of clothes, mainly sparkly and sequiny. She saw her oncologist yesterday and he is going to try an combination of gemcitabine and I think cisplatin (she wrote it down but promptly lost the piece of paper), then following a CT scan if it is responding she is to have chemo and radio together. So we are all feeling quite positive about that. The district nurse came today (my mum had had a few problems with her wound from the stent so they've been changing the dressing) and has said they will come and do her bloods before chemo so that makes it easy for her.

I feel a bit of a fraud at the moment on here as my mum really does seem better than she has done in a long time, her diabetes is more controlled for a start and other than the odd twinge from the stent she has not been in any pain. The only slight issue she has is when she needs to go to the loo she has to get there quick. The other thing that we are all really pleased about is that she has put on weight - 4lbs since leaving hospital. She is eating really well at the moment.

Take care love Catherine xx

[jamescotterell]

Hi catherine

Good to hear your mum is in a good condition! you definitely made the right choice going to your regional speciality cancer center! we found the difference to our local hospital incredible when we did the same with my step dad. i have a bit of advice about something else that you could do as a secondline treatment if things dont go well with chemo/rad...always good to have a back up plan! ask the moderators for my email address if you are interested....it's a bit difficult to explain on here!

all the best!

james