My lovely dad......please read, please help

[lawalsh]

Nicki,

Your email has given me real hope, thank you for your detailed chronology, it does give me an example of someone who has stayed with us through sheer determination. I too have bought the papaya for my dad, and flax seed oil and Quark that I read on someone else's post. What you wrote to me I have printed out and am going to take to read to my mum and dad. They are not internet people, thank heavens, I would be really upset if they could read what is on this forum. They have a very vague idea of what I've been doing on here, I tell them all the positive bits and none of the negative ones.

I'm of the feeling that right now, my dad is starting out his journey with the same determination. He is adamant that it isn't going to beat him, we will see what happens when he starts his chemo. We are being positive and shrugging off any negativity, however the most difficult thing to handle is the not knowing how long until he sees the hospital or has any news. We have no indication whatsoever of the next step. we went to see my dad's gp yesterday, he said we just had to sit tight and wait. The good news is that he has now been referred back to [hospital name removed -moderator]', I don't know whether or not it is to do with the amount of fuss I kicked up last week (I was very polite, please don't think I was mean to the NHS staff, I wasn't, I was just firm).

So, thank you Nicky, and please keep me posted with your amazing story. Please send our best to Ted, sincerest good wishes and a big hug to both of you. It is so important to be positive and not be trodden down. I know we have no idea at this point of how bad our journey is going to be, but we have success stories like yours to aspire to. I ordered half a dozen copies of "The secret" last week, although my husband and I read it over and over again, I now have my family reading it, it gives you hope everytime hope is thin on the ground, and it is keeping my dad's spirits higher than they were.

I've just come in from parents' shopping and am going now to take them to their dietician appointment at [name removed -moderator] hospital, fingers crossed she will add a bit of clarity to the diabetic angle of this situation.

Thanks Nicki and lots and lots of love, LA xxx

[lynbo]

Dear Lesley Anne

I have also bought the book ' the secret ' and I read on a night.

So thank you for that too.

That's what this site is all about - helping each other.

Maybe get onto the hospital to push for when your dad will be seen? No harm in ringing?

I hated waiting around!

Good positive thoughts to you

Lynne

Xxxx

[carmel]

Hi LA

I hope you are a bit further forward. I have just picked up your post on the forum. You need to get in touch with your local PALS team (patient advice and liaison services). You can tell them about your communication problem with the uncaring phone call your mum had and they will investigate for you and get someone to ring you about a proper discussion about your dad. I know how you feel as my 82 year old dad has PC and we have had many contradictions about where it is sited, whether it is operable or not, and are fighting the hospital every step of the way for information and results. He has had a stent fitted to get rid of his jaundice which has worked. But he still has the tumour in the ampulla part of his pancreas and we are waiting for the specialist hospital to decide his future. Wait is 4 to 6 weeks after discharge so it is now a waiting game for us. You must be pushy and become a different person to get results for your dad, if I had not requested meetings with his doctor they would have just sent dad home to die without looking at his results properly. My mam died while dad was in hospital nearly 3 weeks ago through the stress of it all so I have had to be strong for dad and deal with this too. So if I can do it you can do it. Stay strong and don't take any crap. I am thinking of you

Carmel

[lawalsh]

Dear Carmel,

I read your email and stopped in my tracks and couldn't believe what I was reading. You poor soul, to have your dad so ill and lose your mum only 3 weeks ago, goodness me, how on earth are you coping? You poor poor thing. Some things are just impossible to believe, I don't know where you are getting your strength from, but I will keep you in my thoughts and prayers. Two weeks ago I hadn't heard of pancreatic cancer, and now I am seeing all these lives affected by it, it is desperately unfair and so difficult to get my head around. Carmel, I'm lost for words, but try to be strong for your dad, he is the one remaining, I hope you manage to hold it together for his sake. God bless you.

And Lynne, I have everyone reading this book at the moment, a bit like papaya, fish oil and all those things, what's the harm? it only gives hope and positivity, and for me, I still have prayer. As for PALS, all these things are new to me and I am getting my head around them. I tried to find out where PALS was, and I have now spoken to dad's gp, it seems he needed a referral and I didn't know that. I have spoken to his gp/surgery this morning and they are going to ask for a referral.

Yesterday I went to see the dietician with my mum and dad at the hospital. I mentioned to her ever so briefly what happened to my parents last Friday, I know it caused a bit of a reaction on this forum. Yesterday the dietician told me that the lady who had rung my mum and left the message is meeting herself in circles and trying to do a full time job, part time. I found out yesterday that she did in actual fact ring my dad on Tuesday as promised, I spoke to him at 8pm and she hadn't rung, but she rung after my call. It seems a bit odd to me them ringing so late at night, but at least she did ring. I feel bad about telling everyone about the message she left with mum, it was wrong what happened and I am still cross, because of the amount of heartbreak it caused. However, if she is running around trying to do a full time job on a part time contract, then I feel bad, that can't be easy and I suppose she was just doing her best under pressure. I need to be positive, not negative, we can only go forwards not back, I am RC, and forgiveness is at the core of who I am. I'm human, I get cross, but then we have to go forwards and be positive and strong.

My love to all reading this, you are here the same reason as me, let's stay strong for our loved ones and for our own sanity too xxx

[lynbo]

Dear Lesley Anne

It's lovely of you to be so forgiving, this woman may be doing a full time job on part time hours, but this is your family's life, and a serious matter.

Anyway, I'm just about to read some more of the book.

I need to be positive, I've had a rough day. Xxxx

When is your dad seeing an oncologist? And did the dietician say anything about fortisip, or calogen?

Xxxx

Lynne

[lawalsh]

Good morning Lynne,

You sound a bit down, I hope you're feeling better and trying for more positivity, I'm a bit down today too, I'll have to pick myself back up and get through this.

We don't know about when dad is seeing an oncologist, we don't know anything, my parents have been told to sit and wait and they will hear from someone in due course. He has to have a biopsy first and then they will see what chemo and what type of treatment he will get.

I can't bear the waiting, it's awful, we can't plan anything, we can't do anything, I'd like to plan nice things for dad to do but he just sits waiting for the next step, won't book to go away at Easter etc... what a shame and what a waste.

I need to pick up our book and read something that will pick me up, dad by contrast is really upbeat and determined he is going to survive and beat his illness. I hope he is another Ted, who just keeps going.

Bye for now and sending you a big hug xxx

[lawalsh]

Lynne, I realised I forgot to answer about those drinks that are high in calories that you mentioned. Despite his weight loss, the dietician said that his BMI at 22 was good, that it was normal, and not to worry, just to eat little and often and food he enjoys. He is actually ok today, I ordered a load of second hand funny dvd's from ebay, to have sent delivered to their house. My mum and dad have both got a daft sense of humour and have kept it, they say that laughter is a great medicine (it says that in 'The Secret' doesn't it?). I have just spoken to him and he is laughing his head off at 'The Hangover', good, I hope they keep laughing, it will get rid of the boredom of waiting.

Bye for now xxx

[ladywood]

Hi Lesley Anne, glad your dad is having a good day today. What is this book you and Lynne are on about? who wrote it and is it widely available? I need it badly if its as good as you say! Keep strong. Love Marie

[lawalsh]

Hello Marie,

The book is called 'The Secret', it is by Rhonda Byrne, she has since written other books, but this was the original one. Sometimes I find the style of writing in it a bit cheesy, is that the right word? I don't know, but the underlying message is very powerful. I guess it depends on what you want in life, but I think the main message is that it makes you think positively, to be positive every day, and to be thankful for what you have. You can buy it on ebay for a few pounds, it does change your way of thinking.

My dad has just had a letter in the post (their post doesn't come until 1pm, that would drive me mad!!!), but good news!!! He has a consultation with an oncologist next Friday, he is so happy, he thought he had been forgotten, so he is chuffed to bits, he now feels as though the ball is rolling.

Just getting the house and garden ready for Sunday, we are having a photo shoot for my mum and dad and all his siblings and their spouses, neices, nephews, grandchildren. We were going to have it in May (a joint mother's/father's day gift...I never know what to buy them) but the photographer very kindly is going to do it this Sunday at our house. I emailed them last week, his wife read my email and said they would do it straight away, she is an oncology nurse and said that it would be better to bring it forwards. It has given my parents something to look forwards to.

Time to go and sort the garden whilst the weather is dry!! Bye for now xxx (PS I am on facebook if anyone wants live chat) xxx

[kazzie]

hello,you seem to be managing well,I bet it seems like a very long week,but as long as news keep keeps coming through it keeps you going and you seem more positive now.

I too am on facebook,and it kept me going all through dad's illness,as I had moved away from alot of friends that I grew up with,and who knew dad too,so it was good to talk to them,add me if you want too

all the best wishes,prayers and thoughts

karen xx

[ladywood]

Thanks Lesley Anne, I am going to try and get a copy of 'the secret' soon as I can. So glad your Dad has got his appointment with the oncologist next week, hopefully things will start moving now. Hope your parents have a wonderful day on sunday, I'm sure it will be a tonic for both of them. Have a brilliant time all of you. Marie x

[lynbo]

Marie

Go on amazon the book is about £6 on there, and fast delivery!

Also Lesley Anne - make sure you find out when the biopsy will be, my Andy saw the oncologist on July 7th, but didn't have biopsy till 21st? Then a week for results, I wish I'd have made more fuss, as he didn't get chance for chemo in end.

Be firm.

I've just found out someone int area is doing a charity night for PCUK so I've joined forces, last time she raised over £5,000 for charity!

So were meeting next week, and then it's full steam ahead! X

[lawalsh]

Ladies,

Thank you for your lovely messages. [name removed by moderator] if you want to find me on facebook, there is a photo of just my head, I have dark hair.

Well, my dad has had a letter to say he is going to have his biopsy on Tuesday, then he has a meeting with the oncologist on Friday, so two appointments in one week is fantastic. Also, a Macmillan nurse is going to see them on Wednesday, so things are really starting to move.

The strangest thing about all of this is that when dad rang me this morning and is talking about these appointments, he sounds excited, thrilled that things are moving and that he is going to be treated, it just seems so weird that this is so sinister and he doesn't seem to be aware of how bad it is, that it could take his life and fairly quickly, it is heartbreaking. He had skin cancer a few years ago, it was only a small area and was treated with lasers and he seems to think that this is going to be just as easy.

One thing is that he does know now, how much we love him, because we are getting that time to let him know, my mum isn't dealing so well with it, we have to take each day as it comes I'm afraid.

As for the book 'The Secret', really, take from it what you will. Some parts of it are a bit OTT, but the positive thinking is really a good way to live life, to be always looking forwards, not backwards.

Keep in touch, take good care xxx

[carmel]

Hi Lesley Ann

I am glad things are starting to happen. Same with me. Dad has an appointment at the specialist hospital on Monday. It is his first appointment and the life-changing one as they will discuss if he can have an operation, he is borderline apparently, if so it will be a whipple procedure. I am worried if he has it as he is 82. Other options would be chemo or lastly radiotherapy which will also make him ill, so there will be no peace of mind whichever they say. My dad said he will have the op if it is offered so who am I to stand in his way. My sister is opposed to it but it's not her life. I am very down today as things are really getting on top of me. It has been left to my husband and I to sort out my late mum's affairs, my sister was supposed to help as she came up north for the funeral, (she lives down south), but hasn't helped much at all just annoyed me. My brother is totally useless and only thinks of himself so I think that's what is bugging me on top of everything else at the moment. I go back to work next week on Tuesday, so hopefully that might be a tonic as I teach older people and gp referrals fitness ironically, but I like my job and the satisfaction it gives me from helping others. I shouldn't complain really as my dad is so positive despite everything. I don't think he understands how serious the op is I tried to tell him in a nice way today but he is so laid back he is almost horizontal. Well enough of my whinging it is nice to have a listening ear. Let me know how you get on with your dad, you sound a lot brighter. It is the waiting which is the worst of all so we must keep our chins up! I will let you know how he gets on; keep me informed about your dad.

Carmel xx

[lynbo]

Lesley Anne

I can see your frustration and upset, what I want to tell you is, my husband and I had no idea about pancreatic cancer when he was diagnosed, I never looked on this forum. Didn't know about it.

But, we were both like your dad, very positive and upbeat, mainly as we were in the dark about the whole thing. Although I know now, lots about pancreatic cancer, treatments and medication, I look back and I'm glad that my Andy was the way he was.

No matter what age - how can you fully comprehend anything like this? So I think that positive attitude is the way, go with the flow with your dad, or it's already won?

My best friend actually went on this site just after Andy was diagnosed, and she said, even though she read all posts, our positive attitude changed her outlook and she believed Andy would pull through.

Juliana - god bless, is a shining example of this.

So 'chin up' as my Andy used to say,

Xxxxxxx

[lawalsh]

Hi everyone,

A little update.....

Just to say that we have just been to have dad's biopsy today, I was very impressed by how he/we were treated at the special cancer hospital here. My dad ironically is looking better than he has for over a year, it seems strange to be sitting writing this, but he is in bright spirits, he has colour in his cheeks and just seems generally very happy to be getting on with sorting 'his problem' out. My mum keeps talking about "when we get this cancer cured/problem sorted", their plans then are discussed for the next 10 years or so, they seem so much more positive than I am, although I am hiding it well, I feel.

A Macmillan nurse is coming to see us tomorrow, at their home. Friday, dad sees the oncologist, I will be with them again too. I just have to remain positive the way they are. I was glad the Hugh Grant thing on 'This Morning' television was whilst dad was having his biopsy, I know he lost his mum to PC, and I didn't want them seeing any 'doom and gloom' as it were, although of course I do feel for him and know exactly what the anguish is like. Did anyone see it, what was it like?

Dad is still having his cottage cheese and flax oil, his papaya, and is still re reading his book. Bless him, they wanted some new lounge curtains so I am slaving over a hot sewing machine!!! I want them to be happy and still carry on as normal, house proud as ever.

I feel a bit bad, I am neglecting my own family, husband and kids, my house seems so disorganized, like my head, I can't seem to concentrate on anything, one minute I'm ok, next minute in floods of tears. I think that maybe this is normal?

Bye all my lovely friends on here, I will be in touch soon. Thank you for all your support.

Love LA xxx

[Ellie]

Hi LA

Glad to hear that your dad's biopsy is out of the way now. The waiting around for appointments and results is always the worst part. As you said, you can't plan for anything or get on with what needs doing, when you don't have any info on what's happening. That was always the worst part for me when my hubby was first diagnosed. Once I knew what was going on, I could get on and deal with it, even if it was bad news.

It's very normal to have your head all over the place! How can it not be? None of us ever thinks this will happen to us, or our loved ones. One minute you feel positive, the next you are thinking the worst. As for your dad's laid back attitude, well in one way I think he has the right idea. If he knew all he awful facts, he would be so distressed and upset, which wouldn't help him at all. It's probably best to let him deal with things in his own way. Brian, my husband, isn't one for going on the internet and reading up on things, so he never knows anything, except what the doctors or I tell him. I was horrified when I read up on PC in the early days of his illness but I only told him the bits I thought he needed to know. If he'd known the low odds of surviving from the beginning of his illness, I'm sure he would have given up there and then. My attitude was "hope for the best, but be prepared for the worst". That way, I could encourage Brian to fight and stay positive but it wouldn't be a complete shock if things didn't work out. I was still devastated to learn that it had spread to his liver, but I think, somewhere, deep down, I'd prepared myself for the worst happening. This last year has been the hardest, since it spread into his spine, because he's had so much more pain to deal with, but we have still tried to make the most of doing whatever we can, going out as much as possible, taking lots of small breaks away in our caravan last year when we could and we've had spent the last week in North Devon. Brian was told he had 6-12 months to live in June 2009, so he has still beaten the odds in some ways. People tell me I have been so strong and brave, but I don't see what other option I've had. If we'd both spent the last two and a half years sat in a heap crying, we'd have wasted those years when, in fact, we've shared so many good times together and got on with our lives as best we could. It's not been easy, but giving up is not an option!

Anyway, I hope it helps to know how others have dealt with this awful roller-coaster of up's and down's while you are helping your parents through this awful time. I'm sure you family will understand that your parents need you right now and, believe me, as much as you may like a tidy, organized house, as I did, when something like this happens it makes you realize what your priorities are.

I hope things work out well for you all. Make sure you find time to look after yourself, though. Try to find a way to switch off from it all, now and again. Talking of books, as you were, both me & my husband have had a lot of fun and relaxation by reading...wait for it - the Harry Potter books! Someone lent them to us and I laughed at first, thinking I wouldn't want to ever read them, but they have certainly been a great distraction from our problems because they are such easy reading and pure fantasy. Wonderful!

Keep strong and positive, but try and take one day at a time.

Love

Ellie

xx

[lynbo]

Dear Lesley Anne

Good news about your dads fast progress of treatment, it's the best way, and you are doing fab, as Ellie says, housework and things like that dont matter, just keep going the way you are.

I watched this morning - with Hugh Grant, mixed feelings, the Dr Chris ( from this morning ) started going on about symptoms and signs to look for, I burst out crying! Because everything he said was exactly what my Andy told 3 GP and A&E. but if they don't pick up on it then what??

your dads positive attitude us brill, so like I always say, onwards and upwards

Xxxxx

Lynne

[lawalsh]

Hi Ellie,

Your email was so lovely, thank you for that, I read it the other day, some days I can reply and other days I'm not up to it. I know what you mean about the housework not being important, but it adds massively to the stress when my daughter is trying to get ready for school and she has no uniform, or she has to sit out of PE because I've sent the wrong stuff, or I get all the way to her dance class half an hour away and I've forgotten her tap shoes and leotard, its just the stress and my lack of concentration that is causing domestic chaos. School have said it's fine for her to not do homework, but she feels odd, like she's different from the rest of the kids, and kids don't like that, I really feel for her but i have so little time it seems. I'm not working (I'm self employed) so I'm earning nothing, so I can't really afford any domestic help, and I don't have anyone to come and help me. It reduces me to tears when the house is in chaos, but I'm never here, out all the time, and a bit disfunctional when I am here. Not to worry, I'm just moaning now, so self indulgent, sorry!!!

Well, dad was ok on Tuesday when we went to the hospital for his biopsy, yesterday though, he had been up all night in pain with his abdomen (understandibly I thought), but when I called the endoscopy unit at the hospital, she said it wasn't normal.....this really confused me. I told her that I was really confused, so she said she wasn't NHSDirect (charming) and that I had to phone them, not her. I was upset because on discharge, there was a list of phone numbers we could call in the next 24 hours after biopsy, but they didn't seem to want to know. I dialled so many numbers before I got to speak to someone, I felt as though she was doing me a huge favour by speaking to me.

So... I phoned his gp and asked for pain relief, then I went to see dad and mum because the Macmillan nurse was coming to see them too. Dad looked terrible, as though he had aged so much overnight. I have just spoken to him now and he sounds much better today, still in pain from the biopsy, but better for the co-codamol the dctor gave him, he got a good night's sleep from it. That made me feel a lot better.

I know what you mean Lynne about that Hugh Grant interview, it made me cry too, because all those symptoms are SO OBVIOUS, it made me really angry too. If you asked an airline pilot for example...or maybe a solicitor, what the symptoms of pancreatic cancer were, he might work out an educated guess based on A level human biology, and what the pancreas does, and maybe have a hazardous guess at what the symptoms might be. But a gp, I still struggle to believe that a patient presenting with sudden dramatic weight loss, back pain, abdominal pain and diarrhea doesn't think at some point that this is serious to have a scan? I googled the symptoms and found pancreatic cancer is about 16 seconds, I will never forgive myself for not doing that last summer, because I might have gone to the doctor with him and demanded a scan. That way he might have had a chance of Whipples procedure. I know gp's can't google symptoms and in itself it is a ludicrous idea, but, I as his daughter can, and could have. I should have done that a long time ago, and paid for a private scan, I still feel bad every day for leaving it for his gp to sort out, because it has been dismissed as irritable bowel. If I'd have acted earlier I might have prolonged his life.

Tomorrow is a really important day, we are going to see the oncologist, I fear what he is going to tell my mum and dad. They are still very much in denial, and I think that tomorrow's meeting will deal the biggest blow, it is very scary, and my mum and dad's reaction is what I fear the worst, along with my own emotional pain. I am still praying for a miracle.

Bye for now everyone xxx

[lawalsh]

Hi again Ellie.

Please tell me, was your husband operated on, or has he just had chemo? I have just re read your email and I see that he has lasted almost 2 years, and is still going strong with a good quality of life, how/why do you think he has done so well? It spreading to his liver and spine must be devastating for you, but yet your quality of life seems to be very good.

i am just wondering if you have any top tips, diet or otherwise. I'm glad you are strong for your husband, I am the strong one in our family, on the front of it anyway, but I cry buckets when there's no one to see you, it is a very lonely place.

Bye for now and take care Ellie, thinking of you both xxx

[Ellie]

Dear Lesley Ann

You certainly don't have to apologise for being "self-indulgent" on here. This section is for US - the carers and friends & family. Although we are not personally going through the nightmare of having PC, we are still under enormous pressure, having to watch our loved ones suffer and go through all the tests etc. What happens to our family has a major effect on us, our own well-being and if we don't keep strong and positive, then we can't be of help to them. By writing your feelings down here, you can let some of those emotions and frustrations, anger and pain out of your system. Please don't feel you can't say what you are thinking and feeling because that is what this section is for.

I do understand, too, what you are saying about being disorganised. You need your life to carry on as normally as possible and being disorganized does make things harder, but it is totally understandable. When you forget things, it takes twice as long to get sorted again, so yes, it is more than just having a tidy house, isn't it? Not sure if you've said how old your daughter is, but is she old enough to have a bit more responsibility at the moment? Could you explain that her grandad is poorly and you need to help him, and could she possibly just check when you go out that she has everything? Depending on her age, it might make her feel a big more grown up or that she is being of some help to you. Try and rope your husband into helping out a bit more as well. I also understand your pressure at being self-employed. Three years ago, I was self-employed - I was a driving instructor and had to keep cancelling my lessons to be with Brian, so I was letting people down and not earning money, which again added to the stress. I don't know how I got through that first year, after his whipple. I had to try and keep my business going, but wanted and needed to be at home with Brian, so it was really hard.

As for your dad being in pain after the biopsy, I would think that after someone has put a metal probe inside you and taken bits away, it must surely leave your insides a bit tender. I'm glad the painkillers worked. I don't know if Brian was lucky, or unlucky, but during his biopsy, they nicked his bowel and he ended up in severe pain and had to be transferred to another hospital for a bowel repair. As he was on the operating table, for what we expected to be just a minor op, the biopsy results came through and the surgeon went straight into doing a whipple op. I was left walking around the grounds of the hospital for nearly 7 hours, wondering what on earth was going on. No one would, or could tell me anything and we didn't even know he had cancer or what a whipple was, until after he'd had it. So, he was unlucky to have had a problem with the biopsy, but it meant he didn't need to wait for his whipple.

As for tomorrow, yes it could be very hard for you and your parents. No one wants to hear the dreaded C word, do they? It scares us all. If you go in expecting the worse, then it may not be such a big shock if if turns out to be that. If the news is better than expected, then it will be a bonus. All I can say is that you will - somehow - cope. You have to. What choice is there? Once you get all the facts, at least you will know what you are facing. Some people recommend taking a note book into with you, so you can write notes to read back later. Sometimes it's hard to take everything in when you are sat with the doctors and you forget what they are telling you.

I will be thinking of you tomorrow and hope that all goes well. Try and find time to relax a little before then. Even if it's just short walk in the fresh air, or listening to some of your favourite music for a while. Please let us know how you get on.

Love

Ellie

xx

[Ellie]

Hi again, Lesley Ann

You must have posted your last message as I was writing my long one just now! I will answer straight away, while I'm sat at the pc.

Brian was diagnosed in July 2008, as I said in my last message, actually on the operating table. Upto that point, the doctors had only said they thought he may have a blockage in his bile duct and I never, in a million years, expected it to be cancer. He had the whipple and two lots of chemo, until we were told that it was no longer working and had spread to his liver. Brian stopped all treatment then and was actually better for it, until it spread to his spine.

As for diet & other tips, we found it was trial and error. Small portions of food to begin with. I gave Brian easy to eat foods, small portions, high calorie things like creamy rice pudding or anything that he fancied that was easy to eat and digest. It's common for your taste to change after a whipple, not liking foods that you used to. Brian used to enjoy a few pints or a glass of wine but he just doesn't like the taste of it now. I know some people believe there are things which will help shrink cancer, such as green tea or apricot kernels but, personally, I don't have much faith in them. If there really was something which would cure cancer, I'm sure we'd all know about it. I don't blame anyone for trying these things but you can spend all your time and energy researching things, hoping for a miracle, and miss out on living life to the full here and now. I don't want to upset anyone else by saying this - each to their own!

I'm sure you will get plenty of advice and tips from people on here, if and when you need them, so take one step at a time. For me, the very hardest part of Brian's illness has always been the waiting around and the not knowing. Once I've known what is happening, somehow I've faced up to it and got on and dealt with things. None of it is easy and yes, it is very lonely when you're crying your heart out late at night, or in the early hours, but you have to get up and deal with the next day, don't you?

Every person's story on here is different, Lesley Ann, so you won't know what your dad will be like until it happens. One thing which kept me going was in the first year was telling myself that SOMEONE has beat the odds. Keep strong and keep fighting!! But, also take time to look after yourself.

Love

Ellie

xx

[lawalsh]

Thanks Ellie,

Now I see that Brian has had the Whipples procedure, I know that the odds against PC are far higher that if you hadn't had the op. Poor you walking around the hospital ground for hours on end.

My dad was told it was too far advanced to operate when they found out, 3 weeks ago today. So, it's just a case of managing it, and seeing what the consultants says tomorrow. I'm really dreading it.

Bye for now and thank you for the support, it means such a lot xxx

[Ellie]

Oh, I am SO sorry Leslie Ann. I completely forgot that your dad couldn't have the whipple. How could I have done that, when I replied to your post about it?

I think that's what is affecting me most - losing track of things, not being able to concentrate and not reading posts before I reply to them I really am sorry if I

have upset you by what I said. I was trying to offer you some support but have just messed up this time. I truly hope I haven't caused you to much distress.

Love

Ellie

xx

[lawalsh]

Oh Ellie,

Absolutely not at all, poor girl, don't even think it. I know what you mean, I am so disfunctional at the moment, forgetting everything, losing everything, getting confused, it is such a stressful time, not at all, and my dad is still unbelievably hopeful and positive. I look like I've been in a boxing ring, face swollen from endless tears and lack of sleep, whereas he is still in fighting spirit underneath the discomfort of the past couple of days. I've been out, straight from school tonight trying to get an outfit for Comic Relief tomorrow for my youngest, she is 8, I've only just got in, so forgive the late reply to your email. Also, I think with the forum you get confused as to who is who, and remembering all their history, because you only have a name, but no real identity, and I do get mixed up myself.

Tomorrow is the big day and I am wondering what the oncologist will say, and what the plan is. I spoke to my dad this aft who is adamant that he is taking my mum to America, they have saved up all their lives to go, and were going to go at the end of this year. Bless him, determined he is going to live another 20 years, I think that is the hardest bit, I hope tomorrow doesn't knock the stuffing out of them, although I am prepared for anything.

Deep down, I am still hopeful for a miracle, or mis diagnosis maybe, I think a bit of me is still in disbelief, unable to accept that he has this shocking illness. If anyone has any tips for helping him and mum get through another 5 years without an op, I would be grateful to hear them. I would consider anything, altrnative therapy, anything. I would give anything to keep my dad alive, my mum and dad are so happy, all those years together, it is really hard to accept. Any top tips greatly appreciated. And thank you, to all on this forum, that make the lonely world of PC a bit less lonely.

Pray for us tomorrow, for a miracle xxx