A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
lawalsh
Posts: 39
Joined: Sat Feb 26, 2011 12:21 pm

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

Postby lawalsh » Fri Mar 11, 2011 10:00 am

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
Posts: 39
Joined: Sat Feb 26, 2011 12:21 pm

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

Postby lawalsh » Fri Mar 11, 2011 11:59 am

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 :lol: 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
Posts: 39
Joined: Mon Nov 29, 2010 11:31 pm

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

Postby ladywood » Fri Mar 11, 2011 12:46 pm

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
Posts: 39
Joined: Sat Feb 26, 2011 12:21 pm

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

Postby lawalsh » Fri Mar 11, 2011 1:21 pm

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
Posts: 40
Joined: Wed Nov 05, 2008 7:39 pm

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

Postby kazzie » Fri Mar 11, 2011 7:35 pm

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
Posts: 39
Joined: Mon Nov 29, 2010 11:31 pm

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

Postby ladywood » Fri Mar 11, 2011 8:32 pm

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
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

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

Postby lynbo » Fri Mar 11, 2011 11:33 pm

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
Posts: 39
Joined: Sat Feb 26, 2011 12:21 pm

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

Postby lawalsh » Sat Mar 12, 2011 2:26 pm

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
Posts: 29
Joined: Sun Feb 13, 2011 12:45 pm

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

Postby carmel » Sat Mar 12, 2011 6:25 pm

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
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

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

Postby lynbo » Sat Mar 12, 2011 6:39 pm

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
Posts: 39
Joined: Sat Feb 26, 2011 12:21 pm

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

Postby lawalsh » Tue Mar 15, 2011 3:40 pm

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
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

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

Postby Ellie » Tue Mar 15, 2011 4:43 pm

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
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

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

Postby lynbo » Wed Mar 16, 2011 9:46 pm

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
Posts: 39
Joined: Sat Feb 26, 2011 12:21 pm

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

Postby lawalsh » Thu Mar 17, 2011 11:32 am

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
Posts: 39
Joined: Sat Feb 26, 2011 12:21 pm

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

Postby lawalsh » Thu Mar 17, 2011 12:03 pm

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