Advice please

Hi my name is Lorraine and my mother was diagnosed with terminal Pancreatic cancer in September of this year after several months

of being in extreme pain.

She has just spent the last 10 days in a hospice as the drugs they were giving her no longer work. I have never experience death or illness with my family or friends and am finding it very difficult to understand. My Mum was a real doer who ran various organisations

supporting our community and has recently been awarded an outstanding citizen award by our major. My dad was the wind beneath her wings and always in the back ground supporting her. Since being diagnosed he just crys and is so scared both of her dying and his ability to care for her.

She has aged so much and lost so much weight, she is finding it very hard to eat and is on sterods to help. But the change has been so dramatic and although I am strong with my father, the sadness will not leave me. The original diagnosis for 12 months, and we have not been told anything different, however the change is so dramatic, does anyone know what this means and if we are looking at less time.

It is her birthday today and I will be taking my sons to see her afterwork, if anyone could give me advice on how or what I can do to support my father, he is of a generation who do not believe/understand councelling or anti despressants, and although he cant sleep he refuses to take anything in case he doesnt hear mum in the night.

I am so afraid that he will also leave us because of the stress and helplessness he feels.

Hi Lorraine and I'm so sorry to hear about your Mum.

Even those of us who have experienced the death of loved ones before find this disease particularly cruel and disturbing. The main thing is that you are not alone. When you have questions or just need to let off steam please use this board and you'll find that the community will support you - all of us have needed or will need support ourselves, so we understand.

In general terms, though, you might want to just read through information in your own time and at your own pace. There are a number of great websites and two of the most reputable are Macmillan and Marie Curie. Macmillan have a guide written by carers for carers and other family members and you can find this at the following website address: http://www.macmillan.org.uk/Documents/HelloAndHowAreYou.pdf Because cancer can affect so many practical and emotional issues, there is a section of the Macmillan site which is dedicated to giving brief but clear advice on some of these and this can be found here: http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Livingwithandaftercancer.aspx The Marie Curie site have a booklet which is easy to read and understand here: http://www.mariecurie.org.uk/NR/rdonlyres/DA2AEB4D-3931-4A70-910E-EF55E0D74E3F/0/2009_Partnersincaring_WEB.pdf

Your Mum sounds like a wonderful person and I'm sure that many people will want to give her and your Dad support at this very traumatic time. Your Dad, standing behind her in the background giving support, must have worked equally hard.

My husband, Ted, has terminal pancreatic cancer and perhaps one of my biggest worries is whether I will have the ability to care for him when things take a turn for the worse. His death is something which I simply refuse to contemplate right now. It's all very scary and seems insurmountable but I know that we are all very resilient - it's part of human nature. I'm choosing not to think about it so that I can enjoy today rather than worry about next week or next month.

Incidentally, that's probably been the hardest lesson for me to learn. I was a person who planned years ahead and now I have to take each day as it comes and enjoy it for what it is.

In modern medicine there is no need to be in pain and I'm sure that the hospice will work out a regime of painkillers which makes your Mum comfortable, even if it does take a couple of weeks or so. Pain is debilitating, tiring and aging and it could be that once your Mum is no longer in pain she will seem a little better. Any timespan given by anyone can only be a 'guesstimate' or ballpark estimate. I would suggest that you sit down with the doctors and ask whether they have a revised timetable. I know that's scary and the answer may be something you don't want to hear but even bad news is better than sitting there imagining.

My heart goes out to your Dad. Being the primary carer is perhaps the toughest thing that any of us have to do in our lifetime. I feel helpless, frustrated and angry a lot of the time. It's really important that he is made to feel that he has some control over what is happening, not only to your Mum but to him too. That might be going to the hospital in the morning and participating in your Mum's personal care or it might be that he'd like to sit in on the doctors' meeting when her care is being discussed. Since we're all different I can't speak for him but I'm sure that whatever he needs to enable him to feel empowered can be accommodated. The important thing is to find out what he wants and do your best to arrange it. If that's having a nurse come in each day (or night) then speak to your Mum's doctors' surgery, the hospice, Macmillan and/or Marie Curie to see whether that can be done. By being a key part of your Mum's care, your Dad will feel less helpless and if he has some medical support in the form of a nurse he might be a little less stressed. Sleep is important when dealing with stress so it might be that he either needs someone at night or goes off for a nap during the day.

Well I've waffled on and given you a lot to think about. Take your time and don't forget to let us know how your Mum is and how you and your Dad are getting on now and again.

Kind regards

Nicki

hi Lorraine,

I'm so very sorry to hear about your mum, although I can't offer any great advice I wanted you to know that you are not alone. My Wonderful step dad is suffering from this terrible disease and I am so very worried about how my mum and indeed all of us will cope when the time comes, at times i find the anger and sadness all consuming, but as Nicki said we do cope because we have to, you will find the strength from your children to carry you through and your dad is so fortunate to have you along side him, supporting him. Has your dad seen a doctor? I know my mum and dads doctor has been brilliant and there are so many things to help him sleep I think modern sleeping drugs are so advanced from the real knock out tablets of old. Please don't feel alone in all this, I have found real comfort from the lovely people on here that know exactly where you are coming from.

Hello Nicki

Thank you so much for taking the time to reply to me. I know it sounds daft but it i didnt imagine anyone would be going

through the same thing at the same time.

You sound so brave and it must be so difficult for you and your husband. Like you my Dad is so scared he will not cope. They took a long time to diagnose Mum and during those months there were many times when Dad could not find help and would be at A&E at all sorts of times trying to help Mum with the pain, then when she was diagnosed there were all sorts of complications with the medicine.

She is having to take all the medication intravenously through pumps and there have been problems with them breaking down or the batteries running out. This has been very upsetting for Dad as only a Docter/ District Nurse can change of fix them and the moment they stop working Mum immediately gets all the symtoms and pain back. Dad was given several numbers by the Nurse, however everytime he has tried to use them in an emergency there has been no answer and so it is back up to A&E. In our district and maybe others all the resources close at the weekends and so you are reliant on those Numbers. Thank God for the MacMillan Nurse's and our local Hospice.

On a good note she came home from the hospice yesterday and I took my son to see her. Mum was awake although very tired but so relieved to be home with all the comforts that brings.

Thank you again Nicki it really helps to "waffle" x

Hi Lorraine,

Thanks so much for posting on the forum. So sorry to hear about your Mum's diagnosis and how it's affecting your Dad's health too.

I can only give advice going on my personal experience - I hope some if it is of help to you. (so sorry it goes on a bit.....typical of me!)

Firstly, your Mum is losing weight/has lost weight.

Is she taking CREON or PANCREATIN enzymes when she eats meals/snacks?

I lost weight rapidly, even whilst pregnant and this was due to my pancreas no longer making the enzymes to digest food.

If your mum is struggling to eat solids, you can get ENSURE milk shakes - they are packed with calories and are a great way of increasing vitamins/calories without a heavy meal (chocolate was the nicest one). They are used a lot post surgery and are easy on the stomach. I had boxes of them on prescription from my GP. Your Mum needs to gain some weight and staying in bed for long periods of time causes atrophy, this will make her extremely weak. If she can, she needs to go out for a walk, even if it's in the hospice grounds and very slowly. She needs to gain control over her body, rebuild her strength. It won't happen over night, but the sooner you start the better. Your Dad can help with this in supporting her physically.

Secondly, your Dad.

You say he is of a generation that doesn't believe/understand councelling/anti-depressants. Trust me, it's not just his generation - I am 38, my husband is 33 and neither of us have been for councelling since my diagnosis, although I have thought about it often - my husband has not, it doesn't even factor in his thinking. All I can advise is, talking is good. This forum has been great for venting, questioning, comparing and support....and yes, even a little laughter. There is a husband who posts on here, he is taking care of his wife who has Pancreatic Cancer - maybe your Dad could join the forum and just type how he feels about it all. He will get a response and will know he is not alone in this.

As for sleeping, you will have to be straight with him. Sleep deprivation changes a person, mentally, emotionally and physically. Tell him that as a family you are all fighting this battle and need to be as strong as possible (not just emotionally) for your Mum. He needs to get some rest, if he doesn't want to take sedatives or sleeping tablets point him in the direction of natural remedies instead. I used Badgers Balm, it's a vaseline type ointment with essential oils and I just rubbed it into my temples/lips and soles of the feet before going to bed - it helped, and you don't feel foggy/muggy in the morning. Could you treat him to an aromatherapy massage? Would he go somewhere like that? I am sure there are people who offer the service at the hospice. or would come out to treat a patient - your Mum may respond favourably to it - either way, it's a treat.

Try and motivate them both - with Christmas coming up see if you can encourage them to meet a target, where your Mum will be able to enjoy a special Christmas at home - and not in the hospice. It may give them something to focus on and it's not too far in the future to feel unrealistic. Planning ahead is difficult, life can feel like the pause button has been pressed and that you can't actually 'live' like you did. This is true in some respects, life will not be the same - however - we adapt, and it's all about 'quality of life' which is what you and your Dad have to help your Mum with.

If you are able to give us more information on your Mum's diagnosis, ie was it a tumor on the pancreas head/tail, has it spread, what treatment she's had if any (chemo/radio) - there could be other things we can advise you related to her condition.

I only feel scared/helpless when I feel I am doing nothing pro-active. Last year I had surgery/chemo/radiotherapy and hoped my cancer had been cured. This year I found out it hadn't, and it had spread. Medically there is nothing that will cure me, so.....I have to look at other things to help fight this disease.

I don't want to bombard you with information, as I know this will cause just further stress and like I tend to experience - 'brain melt'. Trust me, we on the forum have spent hours pouring over the later trials/drugs - looking for a way to beat this thing. There isn't much out there. Hence why I am trying the nutritional approach, it has to be worth a try.

All I will suggest for now is maybe reading:

http://www.budwigcenter.com/testimonials.php

(It has encouraged me to try out the Flaxseed oil and Cottage Cheese combination - I have it every morning for breakfast, sweetened with honey, topped with muesli and some blueberries/raspberries/grapes - it's like having a cheesecake for breakfast)

Some cancer diets are extreme and not easily followed, so I try to take a little from what I've read and apply it to 'normal' life. Try to encourage your Mum to avoid sugar (especially white - swap to molasses if she find it difficult), white flour and red meat. Then if possible encourage her to eat more fruit/veg and nuts/seeds (not peanuts). Fresh raw fruit/veg are high in enzymes so should be easily digested, if she doesn't find it appetising, try steaming the veg or sometimes a quick stirfry (not too much oil). I have tried to go as organic as possible - just to cut out any pesticides/hormones/chemicals etc.

I am sure that even under the circumstances your Mum will love seeing her daughter and grandkids on her birthday.

I'm so sorry if I have gone one too long - I hope there is something of value in the above for you and your situation.

Kind regards,

Juliana

Hello Juliana

Thank you for your advice.

I havent seen my Mum take any pills , however they are giving her steroids to try and increase her appetite she also has the ensure drinks and trys to at least finish 1 a day. Unfortunately she isnt able to move very far without getting out of breath, however she

is trying to force herself up and out of bed. They did not think surgery of radio would help however she did try one session on Chemo which made her feel so bad she decided not to continue with it. I am not sure where the tumor is however I do know that it

is spreading.

Juliana you sound like such an upbeat and positive person and I can not thank you enough for your comments, up until i visited this site I felt so unhappy and just couldnt stop crying . I will certainly try some of your food ideas they sound light enough for her to try.

It has been of huge value

Thank you

Hi again Lorraine.

This disease is terribly isolating so no, I don't think it's daft that you didn't think anyone else would be going through the same thing. I see you've also had some fantastic support from other members and I do hope that your Dad will gain some support from it all too. If he's not into computers perhaps you could print some of the posts for him to read. Sometimes just knowing you're not alone can help.

I'm glad to hear that your Mum is home and that she was well enough to enjoy your company on her birthday.

With the NHS the unfortunate truth is that he who shouts loudest gets what he needs. If your Dad isn't capable of sitting down with the nurse and/or consultant then perhaps you or another member of the family could do it. You need to be blunt about what you need from them (in a polite way, of course) and what affect the breaking down (or battery failure) of the IV pumps has on your Mum as well as the distress caused to your Dad.

Would your Mum's consultant consider writing a note which your Mum and Dad could keep handy letting A&E know that Mum should be treated as an emergency case? One of the worst things about A&E is the waiting to be seen and it can't do your Mum any good at all.

Best wishes

Nicki

.

Hi Lorraine,

You're very welcome, and I am so glad your Mum has felt well enough to return home. I've not met anyone who's had a long stay in hospital who wouldn't prefer the comfort of their own home.

The capsules of enzymes are very important.

One of the first signs of pancreatic cancer is severe weight loss and/or jaundice - usually the tumor has comprimised the pancreas and it cannot function as it would normally, and usually the tumor blocks the bile ducts from the gallbladder/liver hence causing the jaundice. The enzymes I take are called CREON, without them I would not absorb any proteins/fats/nutrients and would lose weight quickly (like I did whilst pregnant with my 3rd baby). Don't bother asking for the 10,000 - go straight to 25,000 or even 40,000 strength capsules. They are a pain to begin with, as in remembering to take them, but you soon get used to it. Dosing is trial and error, technically you cannot take too much, but you can take too little. Even the ensure shakes require them if your pancreas isn't making the enzymes. It could explain why she has lost so much weight, so quickly.

For a snack I take 1 x 25,000

For a meal I take 2-3 x 25,000

(I've recently upgraded to the 40,000 to save on the amount I need to carry around etc)

If I don't take my enzymes I get terrible colic pain, abdominal cramps - almost like I've eaten something rotten - food goes through the system quickly, comes out the other end hardly digested and as if it's just been put through a blender... (I tried to keep the details as....pleasant....as possible!).

I would truly try the flaxseed and cottage cheese mixture, it's high in Omega 3 & 6 and protein (great anti-inflammatory, eases joints/arthritis, improves liver function, increases stamina, boosts the immune system, helps lower blood pressure, combats depression....the list goes on, so worth taking even if not fighting cancer)

I use:

2 tablespoons of organic flaxseed oil (from health shop, has to be dark bottles to protect from light and once opened keep in the fridge) and -

4 tablespoons of cottage cheese. I blend it using a stick blender (like a Braun multiquick hand blender) until there is no visible sign of the oil and it looks smooth like custard. Then I add -

1 tablespoon of organic honey (to sweeten as it tastes savoury)

Then I add a topping of organic muesli and fresh organic berries.

I also open a capsule of CREON over it, once it's stirred in you don't know it's there.

I eat this in one go for breakfast - but I think your Mum will struggle with the amount to begin with, so you could try:

Adding some organic skimmed milk and organic cocoa powder (if you can find it) - and have it stages through the day like a milkshake.

Making small individual servings of the blend, muesli and fruit - a bit like a healthy desert yogurt style thingy And let your Mum stagger it as a snack or meal maybe 3-4 times a day.

Maybe try just 1 tablespoon x 2 tablespoon of CC - and spread it through the day if necessary.

You can make savoury alternatives but I haven't tried one yet as I really like the recipe I am using!

Flaxseed Oil will cost about £7 for a 260ml bottle.

I would just like to say, I am the least 'new age, hippie, earthchild' type person you would meet - and I have only changed my diet after extensive reading and deliberating over what I should and shouldn't do. I was never really into junkfood, and was brought up to cook (Italian background) and always thought my diet was healthy, and compared to a lot of people - it was. However, I didn't eat alot of veg (especially raw) or good oils (fish etc) and absolutely loved dairy products - and even though this recipe uses cottage cheese, there is a reason for the combination - there are alternatives for those who don't like it.

As for being upbeat and positive, I guess you've caught me on a good day Trust me, I have days where it just seems to spiral out of control and you feel you are sinking into a bottomless pit of doom....it passes....life goes on - with or without you....you decide to join in with it. Besides, I have 3 very young children who are noisy, demanding, loving, beautiful and funny....they don't let me stay down for long as I keep having to chase after them all the time!

Anyway, ask about the CREON capsules. Get started with the flaxseed mixture, involve your Dad - not only could he make it up for your Mum (so he feels he is helping and being pro-active) he could even take it himself so he feels included in something your Mum is doing to help herself. They could compare any reactions/changes to how they feel etc - it may take a good few days of taking it before they notice any difference.

How did the birthday go?

Juliana x

p.s. With regards the medication not being reliably given as the machine keeps conking out, and the numbers you are given has nobody on the end of the line to answer them why don't you try contacting PALS? NHS's Patient Advice and Liaison Services.

http://www.pals.nhs.uk/cmsContentView.aspx?ItemID=932

I had no idea it existed until Nicki told me about it a few months ago - they are definately worth a phonecall and you may have an office near enough to call in.

Hello Lorraine

So very sorry to read about your mum. I can't offer you any practical advice, but both Nicki and Juliana have helped you out there and I am sure wil continue to do so. All can do is offer you some support. I have been caring for my husband who had the whipple op for his PC last year. He's been on chemo ever since but now has secondary cancer in his liver and is terminal.

No matter what sort of pancreatic tumour your loved one has, we all go through the same shock, disbelief and terror. We all cope differently with it and my way is to take one day at a time. I did read as much as I could from the Macmillan and Cancer Research UK pages, as well as the PCUK info, and eventually I understood things a lot more.

Just wanted to say that there are so many of us going through the same as you and your dad, although maybe in slightly different ways. We are all on here to help each other and get some support or comfort if needed. Please do keep in touch and let us know what is happening, so we can help support you too.

Sending you my best wishes.

Ellie

x

Hi all

Thanks again for the great advise.

Emma, i have spoken to my Dad's docter confidenitally on a couple of occasions to ask for his advice, He has actually been great

and spoken to Dad about sleeping pills however Dad likes to pop down the pub for an hour in the afternoon and has read that you can

not have a pint and as that is the only time he leaves the house he will not take them.

It does him so much good to get out for that small time that I can see why he doesnt. I spoke to Dad last night and he said that Mum

is really bad again and that 3 nurses and the doctor had been to visit. He was very upset and has convinced himself that she will not

last till Chrismas.

A hard part of this is not knowing, Dad will not ask the question he is so scared of what they may say, one because he doesnt think long term he will be able to look after her and 2 because he doesnt want to be without her.

It has giving me such strenght reading all your comments, and I feel stronger now.

Thank you

.

Hi Lorraine

Sorry to learn about your Mum. My wife was diagnosed in January, being given less than 6 months to live, & since then I have basically retired to care for her. I'm not too good at giving advice to others with this as we have adopted a very pragmatic strategy.

We informed all our family & friends immediately Chris was diagnosed because we both felt we would need a lot of support (and we have received it in a fantastic way). One of the key things we did (this sounds horrible but IS pragmatic) was contact Chris's Life Assurance company to inform them of her diagnosis. Her policy contained a clause providing early payment if terminally diagnosed & they duly paid out. This has meant we have been able to have a full holiday/event programme together. I cannot tell you how much stress this relieved!

Your Dad needs to keep his own life together if possible. I still meet my pals down the pub every week, despite my utter paranoia about leaving Chris. I think she likes me out of the way sometimes as it is a bit too easy to become a "Mother Hen". Your Dad won't be any use to your Mum if he doesn't keep himself fit. I know it is very difficult, & I have days when I feel very alone (& frightened) but there's nothing wrong with a bit of a cry with a late night Jamesons! But, because I let everyone know I needed their support, people can be quite wonderful & the support I have received has been crucial in helping me cope.

Hope that helps but this site is, in itself, a terrific support.

God Bless

Trevor