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

[lawalsh]

Hi everyone,

Last week my 68 year old dad was diagnosed with pancreatic cancer. He is waiting for a consultation with a specialist, and at the moment is actually 'on a high'. He has spent 9 months back and forth to the doctor trying to figure out his dramatic weight loss last May/June (2 stone off a 10 stone man). His diagnosis has been a relief to him, because after having test after test with no conclusion, he finally has had confirmed that he is actually ill. He believes now there will be a path to follow that he hopes and is certain will make him better.

I have spent the last week reading through this forum website with what I can only describe as utter devastation. My poor mum and dad have no idea what lies ahead of them and are going about their daily life feeling elated, thinking once a diagnosis is given, treatment follows, and all is going to be well again. I cannot even think about telling them what I have found here and on the internet in general. I am worried that his good spirits will keep him heathier, but when he recieves 'the blow of reality' from the specialist, his bubble will burst and they will spiral downwards with the shock.

Does anyone know if pancreatic cancer is always 'terminal'? Can some patients have treatment and then go on to live a normal life? My neighbour of 86 recently passed away, the doctors said he passed away due to old age, could my dad live to 86, or even 76? Even another 5/6/7 years would be something to look forwards to. Can the remission be long term? I know some cancers aren't always terminal and patients go on to live many, many years after being given the 'all clear'.

I really want to have some hope, for my mum and dad who have been together since they were 14 years old (my dad is only 2 days older than my mum, born 2 beds apart in a maternity ward in 1952), also for my 2 siblings, I am the eldest of three. We are a close family, and the thought of anything happening to dad is just unbearable.

Also, I have read on here that papaya leaf tea (or something similar??) can help slow down the growth of the tumor/s, is this true? I read the report in the Telegraph which said that tests do show a positive result. If so, where do I buy this, and will just ordinary papaya fruit do the same thing?

Please think positively for my dad if you are reading this,

Love and thanks,

LA xxx

[kazzie]

Hello LA ,I am so sorry to hear of your Dad,reading your post just seemed like it could have been me writing this 18 mnths ago also my parents had been together since age 15,and dad too was 68 no age at all,especially when in the news all they seem to be saying is we are lliving longer and need to increase pension age ,so because of that I felt I had to reply,although Iam not so good at writing the right things,there are alot of other people on here who will do that for you,and they are good.I'm afraid I havent heard of the papaya leaf but if you can get it try it.We tried the manuka honey,and Dad liked it.

Like I said I havent posted much on here but I always read and keep up to with all,and I am here if you need to post,I'm sorry that I havent been much help though

all my thoughts are with you and your family at this time

xx

[lawalsh]

Hi Kazzie,

Thank you for your reply, I am sorry for your dad and mum too, what an awful illness. I am new to this website, I didn't know if anyone would reply at all, so it's lovely to have someone who can empathise.

You don't say in your response, but did your dad manage to survive it for a while, is he still living? This is the bit that I am struggling with, because with everything in life, there always seems to be hope. With this, I can't find any sign of hope at all. My parents both retired 3 years ago, they had worked extremely hard all their lives. They were so looking forwards to their retirement and I can't even contemplate how my mum would cope without him. He is a wonderful husband, father, grandfather, adored by everyone and my heart is in pieces thinking what might be ahead. How can we hang on to my lovely, lovely dad???

He is being seen at [hospital name removed -moderator], I hope there is some way they find to make him better, I have heard the cancer unit there is very good.

Thanks again Kazzie, big hug,

LA xxx

[lynbo]

Hi

Leeds hospital is very good I've heard, so, chin up, think positive, and don't think too much ahead till your dad is seen.

All I will say is be firm and make sure you are kept up to date with all tests and treatment, that's the key

Xxxxx

[kazzie]

Hello LA ,my whole world collapsed the day Dad told me,he was still working,he had a lovely oncology team,and was told about 2 years,after 3 months of chemo,he retired from work,as it was difficult doing the job he was doing,but it seemed we were not the only ones who thought so much of him,his collegues did too and he was nominated for Buckingham Palace Garden Party,fortunately he was fairly well when that came round,and we have a lovely photo of them both there,and he didnt look poorly at all.Dad lost his battle 11months after his diagnosis,but it was very quick and totally unexpected,if you can say that with this.Be as strong as you feel you can,I still cried with him,but in that last year I had some fantastic chats with him too,and now through tears while I'm writing this I do remember that time so much.Tonight my thoughts and a little prayer for you and your family

KAREN XX

[clair2305]

Hi

I'd agree with Lynne, don't think too much ahead until your Dad has his appointment with his consultant. When my husband was diagnosed I was advised to get a notebook and I advise you to do the same....write all the questions you have, leaving spaces for you to write the answers they give you and remember, no question is silly, stupid, too harsh, or off limits. My hubby's consultant was great, always answered my questions and knew the 'red book' would come out at appointments.

As for Manuka Honey, yes it is great, it helps with side effects of chemo and my hubby had it during his chemo. It is expensive and the higher the UMF number the better....my hubby, Blue had a fit when he saw the price (cos my mum always bought it for him).

Re the papaya leaf tea, this is a tricky one and I've already commented on this forum about it as I had contacted the research scientist involved.

My post can be found here

http://www.pancreaticcancer.org.uk/discussion/viewtopic.php?f=3&t=294&p=1783&hilit=papaya#p1783

Also see my other post where I say about what papaya stuff me and my hubby had

http://www.pancreaticcancer.org.uk/discussion/viewtopic.php?f=2&t=304&p=1906&hilit=papaya#p1906

You can look through my other posts too, to see other stuff I've said. I will not regurgitate it all here as I'm sure you have so much going through your mind and information overload is not always a good thing.

Take care

Clair

[lawalsh]

Clair, Karen, Lynbo,

Your replies are of such comfort, I can't thank you enough, I am feeling very alone with this, so thank you.

I clicked on the links, I had actually already read them as I have been looking through this site all day, every day for the past week. The Flor Essence sounds interesting, and gives me something to order and think about, I hope it will help him, it sounds quite good if what is said about it is true. I don't know about giving him fresh papaya, he is going to the toilet about 20 minutes after he eats, and it says on the Cancer Research Uk website to avoid fruit for PC, is this true? I suppose it makes sense not to irritate an already irritated bowel.

I will take your advice because I don't know what else to do, I know it will be one day at a time. My main problem is dealing with how happy and cheerful they are at having had a long awaited diagnosis, but how in the dark they are at how serious it is. What a blow it will be, I can't see my parents go through the pain they are going to have to deal with, it will break my heart.

Thank you for all your kind words of comfort, it really has made a difference finding this website.

Lesley Ann xxx

[Ellie]

Hi Lesley Ann

So very sorry to hear your story. It is devasting for everyone to hear the awful C word and, as you have read on here, pancreatic cancer doesn't have the best survival rate. It is bad enough to learn your loved one has PC and even worse when you read the statistics, BUT there are long-term survivors! I would think that people who do survive won't need to use this forum, so it's more likely that everything will seem worst case on here, because we all use it to either get info, or support because we are the ones that need it the most.

Like you've been advised, try not to look too far ahead at the moment. Easier said than done, but you will just be overloaded mentally and emotionally and you need to try and stay focused to find out exactly what the prognosis is. Once you have all the facts, you will have a better idea of what can be done for your dad. You have to get a balance - not be too distraught at the awful things you read about PC, but not thinking it will be all sorted out easily either. This awful disease affects everyone so differently and the treatment will be different for everyone, too. My husband had his whipple op in [name removed -moderator] and received excellent care. He was under the care of Mr [name removed -moderator], who is absolutely lovely. [Name removed-moderator] has a state of the art cancer centre, so I am sure your dad will be well looked after.

At least you know you are now in touch with others who have been/are still going through the same experience as you, which is a great help. Try to keep positive and strong and take things one day at a time.

Thinking of you

Ellie

x

[Margey]

Hi Lesley Ann

I am so sorry to hear of your Dad's diagnosis and my heart goes out to you all. It is so hard to cope with the shock in the initial stages and the outlook can look so bleak. I was diagnosed in September 2006 (aged 56) and at that moment the bottom of my world fell out and I thought that it was the end for me because my mum had died of PC and it was only three months from beginning to end. But I had a whipples and chemo and here I am four and a half years later with my consultant talking of discharging me in October. So there certainly is hope. It has been a long journey and I have to say that because I am now so well I have tried to put aside so many of the traumas experienced along the way- striving for survival is so apt!

I think Ellie is right that not so many survivors post on here. I read the posts but don't always comment because often I feel guilty that I have been one of the lucky ones. But I so wanted to give you some encouragement.

I am sure that your Dad will get good treatment at Leeds and all options will be explained. At xx we saw the Macmillan nurse straight after my first consultation and she went through everything that the consultant had said and was always there for us when we needed extra support. Don't be afraid to ask all you want to know but also be prepared for them to lay all the awful stats before you. When they explained the Whipples proceedure they gave me all the odds of things not going well so I couldn't believe it when I was home 8 days after it.

Hang on in there and try to be positive. You will need all your strength to cope with each hurdle as it becomes known.

My thoughts are with you and yours

Margeyxx

[LittleMissOptimistic]

Dear,

all I would say is keep positive. Stay strong.

And cherish each day.

This we should do no matter what.

And don't ask for facts, even the doctors can't give them to you.

My thoughts are with you,

best,

Ella

[lynbo]

Dear Lesley Ann

A lady who lives near me has just finished climbing mount kilimanjaro after having pancreatic cancer and a whipples op!!

She is 4 years all clear now.

All money has gone to PCUK - now there is a hopeful story!!

Chin up, as Clair said, get your notebook, and positive head on, if yr parents are upbeat, it's the best way? I know they haven't read what you have, but, my motto is, keep strong, otherwise yr dad might aswel just give up now.

Love to you all

Xxxxxx

[lawalsh]

Dear ladies,

You have no idea what hope you have given me writing your messages. Almost 5 years after Whipples and been given the 'all clear', climbing Kilimanjaro, WOW, these are the stories I need to hear.

I never thought of it in those terms, that the survivors actually don't need to post on here, and maybe they would feel guilty for being alive. Well actually, no, you mustn't feel guilty for still being here, it is inspirational that you are and that there is hope.

The last week has been very black, I needed to know everything, but now, I have light and hope. Your messages are uplifting, it seems that 'positive thinking' is the key, we all have to be positive and will this illness to diminish as quickly as possible.

Thank you for your inspiration, please keep it coming.

Love to you all,

Lesley Ann xxx

[lawalsh]

What an awful day......

Today we got the results of the scan. An anonymous lady, who rang from a withheld number, not saying where she was calling from, called my mum, said my dad's cancer was too far advanced to operate, and that he would be sent to a local small local hospital for chemo rather than [hospital name removed -moderator]. Then she put the phone down. My mum said the call was about 20 seconds long, she didn't have time to get a pen and paper, and that was it. A life changing phone call delivered with no names, no feeling, no compassion and no time for my mum to ask any questions. Mum said it was just as though Tesco had rung up to cancel their shopping order, some strange woman calling to cancel my dad's life. I am absolutely devastated. I can't even cry, I'm just numb.

[lynbo]

Right, Lesley Ann

First, be calm, then you need to go to your dads GP first thing Monday and don't leave till you have answers.

Where did he have his scan? Ring there? Then get a book and write everything down, you need to know who he will be seeing at the appointment, and when it is, and tell them you are not happy about the way your mum was told, and that you need someone to contact you.

Please be strong, lots of people on here haven't had an op, but like Ted are still going strong

Xxxxx

[Ellie]

Oh, I am so sorry to hear what has happened, Lesley Ann. To hear bad news in such a cold and impersonal way is terrible! No wonder you are shocked and upset. It makes it worse that it's a weekend and you can't even get hold of anyone until Monday.

I hope you will stay strong over the weekend until you can get more info early next week.

Thinking of you and sending you my best wishes.

Ellie

x

[kazzie]

Lesley,like the 2 previous posts,I am so sorry that your mum had to experience that sort of behaviour and with that sort of news,especially at a weekend,be strong and monday will come when you can try and do something,we are all here,on here.

thoughts are with you

Karen x

[ladywood]

Dear Lesley Anne, I've been following your posts and I'm so sorry to hear what has happenned. What an awful way to break such bad news. How can someone do such a thing, dont they have any empathy? Like Lymbo said go straight to doctors mon morning and try and get it sorted. Dont let them put you off! Wish you the very best of luck and will be thinking of you and your family. Love from Marie x

[kazzie]

Lesley Anne,Am thinking of you and your family, tomorrow and wishing you all my thoughts and prayers for the next few days while perhaps you might find out more xx

karen

[lynbo]

Lesley Anne

Just wanting to say keep strong for tomorrow, bet you cannot wait for it to come, pen and notebook at the ready, be firm but calm, and try and go in person if you can, it's always better.

Will be thinking about you all day.

Xxx.

[lawalsh]

Lynne, Ellie, Karen and Marie,

You don't even know me and yet you are so kind to me, thank you, it really gives me hope. I do see your messages but don't have the strength to type, just now I'm having a strong moment, so here's the update.

We have secured an appointment at dad's gp tomorrow morning at 10am, that was the earliest we could get, I hope they don't mind my mum, dad, brother and me all turning up. Also, we are going to see the dietician on Wednesday afternoon, so at least the ball is rolling. It is the most horrible feeling of waiting, and no news that we receive is ever good, I think that is the hardest part. I'm going to be ever so nice, polite, but firm to make sure my dad gets the best treatment.

Has anyone looked at Budwig, taking flax seed oil and quark mixed, or does anyone have any other diet tips? Whilst I'm a bit more positive today, I'm looking at food and what might help my dad. It seems a consensus of opinion on lots of cancer websites that cutting out meat from the diet is a good help, does anyone know this to be true? And what about fish? It also says everywhere that sugar is bad for cancer, that's fine because he is now diabetic, but it also says that wheat and corn flour aren't good either. My mum is very old fashioned in her cooking, baking etc... it will be such a shock to her, poor thing.

Let me know ladies of anything positive that you know I can do to help. Lynne, you say Ted is still going strong, how, what's his secret? I am still very new to this site, I have tried looking for the thread that tells me about Ted and can't find it.

Bye for now and a million thanks for your lovely messages,

Love LA xxx

[kazzie]

Lesley Anne,All the best for tomorrow,like in previous posts,go armed with a paper with questions on,that you want to ask,because once you are there you just don't know where the time goes and as for being tongue tied,it all seems so much to take in at the time.I did the same as you I read the posts and when I felt I could I replied ,we all are either going through this or have been,so we all understand.

My thoughts with you all

Karen xx

[lynbo]

Lesley Anne

Hi, been waiting all day for your post, just hoping you got on ok.

So tomorrow, the GP won't mind, you ALL need to be strong as a unit and find out what's happening next.

The dietician will advise on all those questions you asked in your post, and they may give your dad drinks, called fortisip, and calogen, they are small flavoured drinks, very high in calories, but easily digestible.

Think colognen is 400 or 600 cal per drink?

Anyway, you should ask when your dad will be seeing an oncologist, and starting medication/treatment?

Did you get in touch with the place where he had the scan? As they are the ones who ramg your mum?

Ted - he is Nikki's partner, she is on here, not Ted.

Good luck for tomorrow, try and write questions down, because when you get there sometimes you get carried away, lots to take in, and forget, I know I did.

Will be thinking of you all

Lynne

Xxxxxxxx

[lynbo]

Me again

Nikki posts under nardobd, she's an inspiration, and very clued up xxx

Lynne

[lawalsh]

Thank you Lynne,

I have just read your message as I am dashing out of the door and written down the names of those drinks, I will let you know what is happening as soon as I am back home. You are brilliant support and you have no idea how much it means. I would really like to speak to Nikki too, I'll try to work out later how to contact her. Thank you so much xxx

[Nardobd]

Hi Lesley Anne and I hope you got some peace of mind from your Dad's GP today. I'll just take the opportunity to thank Lyn for her comment, which was so nice to read.

Ted, my husband, was diagnosed with advanced pancreatic cancer in February 2009. He was told that it was too near to the Portal (?) Vein to be operated on and that he would have pallative chemotherapy to ease symptoms. He was given 6 to 9 months as a time guideline at that point. He's not only still here but has a reasonable quality of life!

What's the secret? I can only tell you what we've done and what's happened for us. Please take what you find helpful!

Firstly Ted, who can be a pushover in everyday life, has a steely determination when he sets his mind to something. After his diagnosis I was crying in his arms (yes, wrong way round, I know,...call me selfish!), and he promised me that he would fight this disease until his last breath. He had too much to live for to just 'pop his clogs'. I do think that this fighting attitude has a bearing on it - we don't know just what affect the brain has on disease and it could be crucial to adopt an attitude of "it's not going to beat me!"

We decided that we were going to be proactive, with a positive mental attitude. We would spend every minute we could together and we would enjoy it. Early on, Ted said he didn't want to focus on his disease, so we don't discuss it much. I took a year out to see Ted through chemo (and as I thought then, his last few months). We attended the hospital together for every session and other than that and ancillary appointments for scans etc we didn't let the cancer affect us or what we did.

Ted and I prayed that he would be one of the few that survive. I don't know whether that has had any affect but I'm leaving nothing out here. On that basis I should say that some years ago I trained as a spiritual healer and Ted said that when we were in bed at night I was like a radiator (heat is supposed to be a sign of spiritual healing).

I became very proactive and did a lot of research...some of it was way above my head and other articles I dismissed as being quacks trying to rip off the desperate. There are, however, two things that I implemented in Ted's diet which continue to this day. The first is papaya - there was some research indicating that papaya fruit helps - there are articles on this board about it but I won't go into the theories at length in this post. I encouraged Ted to try papaya fruit and he likes it so it was easy to incorporate that into his daily regime. The other is Omega 3 (fish oils). Again there is some credible research that this helps and Ted just takes one tablet every day.

Both of these things are changes to his diet that won't do any damage, even if they don't work and they're not hideously expensive.

Ted doesn't eat a lot of meat generally and eats less now than before his diagnosis. He has cut out alcohol althougher.

We've been very proactive throughout and every time there's a sign that the disease is breaking through, such as his tumour markers rising, I nail down his consultant (not literally!) and insist that we have a full review of the position. Ted did the initial six-months of chemo cycles (3 weeks out of every 4) and due to tumour markers rising had another session of about three months, which was cut short because Ted started to get recurring infections. He's very lucky in that what side-effects he did get were mild the first time round (a bit of nausea, tiredness and hair thinning), although his immune system was obviously affected the second time.

Wow, I've rambled on and on here and probably given you way too much information, although I've tried to keep it brief. As I say, take what helps and feel free to ignore what doesn't.

Sending thoughts to your Dad, you and all the family.

Nicki