82 year old dad newly diagnosed with pancreatic cancer

[carmel]

My dad was taken to hospital on 1st February with severe jaundice and rapid weight loss, (wouldn't see a doctor until pushed then emergency admission). He has had all the tests, a stent fitted to get rid of the bile from the blocked bile duct which has been effective, Unfortunately been told he has a tumour 2cm big in the head of his pancreas.the doctor said today he didn't think worth operating on because of his age, (even though rest of health good) and situation which is the head of the pancreas, and painted a really doeful picture. Chemo might be an option to stop growth. Dad is in no pain and eating even though losing weight. I wonder if anyone can give advice from their experience of loved ones in this position. We want what is best for dad and don't want him to have operation if no hope. Is it best just to refer him to a hospice and watch him die or to have the op in the hope he might get a few more years? Any comments will be really appreciated as my sister and I just want what's best. The Dr reckons dad only has 3 months. His weight has gone dramatically so he may be right.

Thanks

Carmel

[lynbo]

Hi Carmel

Have they said if the tumour had spread to anywhere else?

If he is eating and in no pain it doesn't sound like it?

And if they have run tests, have they done a boiopsy?

You need advice from the oncologist, be firm and maybe write down all your questions ?

You and your sister could go together?

Take care

Lynne

Xxxx

[carmel]

Hi Lynne

They said the cancer hadn't spread to anywhere else as far as they know, and have done biopsies etc. I think the doctor was against the op because of where the tumour is, (head of pancreas). He is only a junior doctor we haven't seen an oncologist. The junior doctor seems to be relaying information between the people who made the decision and our family. My dad wants chemo to stop any further growth but he is becoming so frail we don't think he will withstand the treatment, They are supposed to be "reviewing the review" i.e. original decision not to operate. I think my sister and I asked all the right questions. We will see what happens today but if the op is too risky we don't want him to have it. My dad wants to die fighting which is why he wants the chemo which i think they may give him.

[PCUK Nurse Jeni]

Hi Carmel,

Your dad should be seen by a HPB consultant surgeon with regard to the operation.

When they speak about fitness it refers to how strong the heart and lungs are to cope with the operation. And the anaesthetic.

If they consider surgery, there are tests which can be carried out to assess this (Echocardiogram and lung function or vitalograph).

This would easily give the yes or no for surgery.

Jeni.

[carmel]

Hi Jeni

Thanks for the info. Just sent you a message from my e-mail address. I will ask to speak to a doctor tomorrow and find out what's going on, they seem to forget that time isn't on our side.

Carmel

[Juliana]

Hi Carmel,

3 months sounds a bit grim considering the tumor hasn't spread, had no biopsy and is 2cm in size and not attached to anything.

Second opinion is the way to go. Also if your Dad is losing weight, but not lost his appetite -and he finds his stools to be fatty/floaty and smelling differently then his Pancreas may be struggling to make the digestive enzyme required to absorb all the nutrients from his food,including the fat in particular.

ASK FOR CREON! Its a capsule he will take each time he snacks or eats. As for the amount, it differs for everyone. Personally to not waste any more time, ask for the 25,000 strength, take 1 with a snack(tea and biscuits) and 3 with a roast dinner and see if it makes a difference. Any excess creon that doesnt get used just leaves the system, so no over dosing etc.

Good Luck,

Juliana

[lynbo]

Hi Carmel

Been thinking of you, what's the latest with your dad?

Xxx

Lynne

[carmel]

Hi Lynne, Juliana and all my supportive bloggers out there including Jeni who very kindly rang me with sound advice which I took.

Well it turns out dad,s heart is too weak, to have an op or chemo he had the test. But on Jeni's advice we asked for a dietician and Creon tablets, (which were suggested also by Juliana) which he mus tnow be getting as he has less diarrhoea and looked perkier today. Also had sleeping tablets so is sleeping better and regaining his strength a bit. his diet has improved (dad likes all things bad for him).It is now palliative treatment he is getting, and we hope he will improve in himself even though we know he hasn't long. Unfortunately, my dad was the main carer for my mam who was very stressed with the way my dad's health declined and subsequently died in her sleep yesterday so double devastation. But dad's attitude is keep calm and carry on which is what I am doing. Poor dad is missing mam as we all are but there's nothing we can do for her except give her a good send off so that's what we're going to do - at their local pub after the funeral.

I am disgusted at things which have happened at the hospital(hospital name removed -moderator) where he is. The doctors are not telling the nurses what's going on, treatment is too slow. The Doctor on call didn't know dad had diarrhoea for 6 weeks. The sister on the ward who was excellent didn't seem to know much about dad and took the trouble to speak to me - more so when she found out mam had died. some of the nurses make you feel like you are being a nuisance, which I am now. One doctor was "batting" for my dad to have an operation and made the board sit twice but sadly the op turned out not to be an option. It seems some of the staff are very good and others don't seem to care. weekends are ridiculous as there are no doctors. My dad has got swollen legs and an infection, and my sister is visiting tonight so i have told her to get an on call doctor out, that's what they're paid for. I am going to visit dad tomorrow evening as I can see what drugs they are giving him then and how much Creon he is getting as thanks juliana for that info on dosage, I will check what he's getting. I will keep you all posted, as this site is the only thing keeping me sane - it's a wonder that i am not heading for a spell in the funny farm. I will certainly be doing some fundraising for pancreatic cancer uk in the future when my life has regained some kind of normality, as I am a fitness instructor so will think of something innovative. Thanks everyone I will update dad's progress.

[Ellie]

Dear Carmel

I am so very sorry to read about the problems you are having with your dad and also for the sudden loss of your mum, too. What an awful time you are going through right now. Life is so unfair, isn't it?

Just wanted to say I was thinking about you and hope you find the strength to see you through everything you have to do right now.

Take care,

Ellie

x

[margb5343]

Hi Carmel,

I am really sorry to hear the news about the sad loss of your mum and also what your dad is going through at the moment. It is a godsend this sight as I found it really helpful when I lost my mum aged 64, 3 weeks ago.

I wish I had found this site a lot quicker as we may have been able to help mum out a bit more.The nurses and doctors had the same couldnt be bothered with her attitude, nurses were not made aware that she was terminally ill and only had a few weeks left. For the last 10 days of her life, we managed to get her into the Alnwick town hospital which had a macmillan suite and she got the care and attention she needed. This was so much more dignified for her, having her own room and the peace and quiet she needed. Prior to that she was just shoved from ward to ward ie people with gall bladder problems instead of being in her own room.

We have a meeting at one of the hospitals in a week to discuss the lack of care my mum had, not that we expect anything to happen but at least if it can stop anyone else going through the same.

Mum was only buried 2 weeks ago so at the moment its still very raw for us. I still havent been able to come to terms with any of this.

Take care and give your dad all the attention you can.

love margaret

xxxxx

[ladywood]

Dear Carmel, just wanted to say how sorry I am to hear about your fathers illness and the sudden death of your mother. Life can be a bitch sometimes. I do hope you get better treatment now for your poor dad. I buried my sister on thursday it was heartbreaking but we were comforted by the support and kindness we received from everyone, and I too have found this web site a godsend. Thinking of you and family at this sad time. With very best wishes. Marie

[carmel]

Hi Everyone.

Thanks for all your kind wishes and support. It sounds like other hospitals are the same as the one dad is in.

My dad has put on weight so the Creon is working which is good news. today he wasn't asleep when we arrived so that is another plus for now. Still no doctors about so will be complaining tomorrow as his legs are in a state and he hasn't had antibiotics. May look at moving him somewhere better as not happy with that hospital but I will let you all know. Many thanks for all your replies and advice and information, especially as most of you will have been through what I am going through now. Mam's funeral is Friday and is giving me something to focus on. I will keep you all informed of dad's progress.

Carmel x

[carmel]

Hi Everyone

New turn of events dad is coming to live with me, (they are discharging him tonight) and they are talking about sending him to the outpatients at one of the main specialist hospitals in Newcastle, so maybe he will be offered some treatment after all. The leg infection turned out to be an irritation from salty skin caused by the bile duct problem so he is having lots of moisturiseres on his legs and they were a bit better last night and less swollen. He has been for a haircut today I took him to the barbers, it is the first time he has been out of hospital since 1st february and it was a lovely sunny day.

I think he got a taste of freedom so said he didn't want to stay in the hospital, (also because problem with another patient stealing stuff and trying to get in wrong beds as he is apparently mentally unstable and dad had no sleep). Before I even asked the doctor, he mentioned that dad would be better off at home. So we are all very happy. It is my mam's funeral tomorrow so we have to get through that, but we are all supportive of each other so we will battle on.

Thank you all so much for all your kind words, support , help and advice. I don't think my dad would be at the stage he is without it. PCUK gave me the knowledge to ask the right questions and keep pushing for dad> I had never heard of the charity but when things are a bit normal I will be doing some fundraising and raising the charity's profile. Anyone out there with relatives with the disease I say DO NOT GIVE UP HOPE AND EXPLORE ALL AVENUES OF TREATMENT. Dad May not have a chance yet we'll have to see but at least we will have done our best for him. Watch this space!

[pamela]

I'M so sorry to hear of the loss of your mum and of your dad.

When my dad came home,a district nurse came out twice a week,the times increased as the weeks went by until they came in three times a day each time being here at least an hour. We were also lucky enough to have an overnight nurse come for the last few weeks[mum is not well herself ]

Get all the help you can.

My thoughts are with you.

Pamx

[lynbo]

Hi Carmel

Glad your dad is coming home, it will lift his spirits.

But, the fact you have your mams funeral is not good.

I hope you get through the day, and get the treatment you deserve for your dad.

I've heard Newcastle is a good place, we didn't get chance to go there.

My thoughts are with you xxx

[carmel]

Hi everyone

Just a quick update for people that have been kind enough to blog me about my dad and for anyone else looking at information.

Latest on dad is that he is waiting to see a specialist in [name removed -moderator] as it looks like he will receive either an op or chemo. He is happy at the moment, seems to be coping ok with his grief, and he is enjoying living with us and has adapted well. He is eating and putting on weight, and his time in hospital seems like the distant past. So now we are just playing the waiting game with appointments. They said he should get a decision 4 to 6 weeks after discharge. The stent inserted in his bile duct seems to be working but we are awaiting the results of a blood test to confirm his bilubrin level but jaundice has almost gone by the look of him. They said that the tumour is in the ampulla of the pancreas so I must look this up as maybe it is a better site for an op, as we were told head of the pancreas initially but we have been told so many contradictions by the hospital in question, that is is difficult to be certain of anything anymore. I will keep you all informed. Thanks for all your kind words

Carmel

[lynbo]

Hi Carmel

So glad things are looking up for you and your dad, I've heard good things about [name removed -moderator], and reading between the lines we must live close and Im betting the hospital in question that you previously visited was the one we were at!!

Shocking, and I felt the same as you about the people there.

The fact that the jaundice is subsiding is such a good sign.

Chin up, onwards and upwards

Xxxxx

Lynne

[carmel]

Hi lynne and everyone.

My dad has an appointment with the specialist on 31st March for a biopsy to confirm tumour is cancerous, (they already said it was so confused about this). He also has to ride a bike for a fitness test to see if he is fit enough for an op. They said he might have to stay overnight and to take overnight bag. I am assuming this is because of the time it takes for the sedation to wear off, his appointment is 2pm. On 4th April they will tell him what they are going to do. I can't believe this has been going on for a whole 2 momths! We have forgot about his cancer we have been too busy going out and about, and dad is fairly mobile so we are making the most of it. I think he will have the op if offered. I will support his decision but think it will be the end for him. Chin up onwards and upwards.

[lynbo]

Hi Carmel

I find it frustrating for you - that still you are waiting for definite answers as to what and when your dads treatment is.

I know with my Andy they said that although they knew the tumor was cancerous they had to determine what type of cancer. Which took 3/4 weeks.

But the length of time you are experiencing is excessive in my opinion?

Shout louder I think?

Your dad being mobile and about is nice to hear.

So "chin up" as my Andy always said.

Love to you all

Lynne

Xxxx

[carmel]

Hi Lynne and everyone.

To cut a long story short. Dad had the fit test. Also a biopsy. Went for the results on 4th April. Told borderline for surgery, biopsy result wasn't back so it is unlikely we will get it now. Dad has decided he would rather have a possible year to live than be poorly after a major operation from which he might not recover or die. Chemo not offered. I wholly support his decision in fact it's a bit of a relief as I would hate to see him suffer and the experience we have had with medical staff at both hospitals has been poor. He is now on Creon so should put on a bit more weight.Thanks for all your kind words and support, we are now just trying to live a normal life as possible. No more hospital visits for another 3 months which is a bonus.

Love to you all

Carmel x

[lynbo]

Hi Carmel

You have took the bull by the horns, good on you all, if your dad is okay with it, your supporting him, that's all you can do.

All the faffing around with the hospitals is not on.

The man down my road having same trouble, in and out of hospital 4 times in last week and a half, his is stomach cancer though.

I'm sure you will support and help yr dad all the way.

You are in control now, you can build his strength up, then enjoy some quality time.

Love to the family

Xx

[carmel]

Hi Lynne

Thanks. I have conversed with you that many times, I feel like we are old friends now. Shame other people have the same trouble with hospitals. Our hospital sent me a questionnaire but I couldn't be bothered to fill it in. The any other comments page would have been too small to write in all my gripes!

Best regards Carmel x

[lynbo]

Hi Carmel

I know, when I speak to my parents I refer to people on here as 'my friend'

It's good to have people who understand your situation.

Xxxx

[lynbo]

Dear Carmel

How are things?

Haven't heard from you for a while

Hope your all as well as can be xxxxxx

[carmel]

Hi Lynn

Sorry for late reply but there have been more twists and turns with my dad than enough and we managed to book a couple of weeks holiday to destress and only got back on 4th July. Today he has been operated on as they eventually decided that the tumour was small and situated in the ampulla of the pancreas which is a good place to be "got at." Haven't seen him yet but hospital report looks favourable, all went to plan and was recovering. I will be visiting him tomorrow. Can't believe it has taken 6 months to get sorted.

Prior to op He was doing well so we let him return back to his own house but we think he wasn't looking after himself as well as he should and he started to go down hill a bit last week, so if he he hadn't had op I think he would have got worse pretty quick and we would have had to arrange care for him. It was stressful for us when he was living with us. As soon as he was feeling better he took over the house and the garden bless him so it was time to send him home!

I am worried sick about all post op complications etc so I am doing some research on his op called pancreatico duodenectomy, (think that is how it is spelt). I will keep you informed, you must be psychic I was going to send you a message then spotted you had got there first.

Best regards

Carmel