Such a horrible disease

[jules 2015]

Hi

I have been reading the posts on here for some time but have not had the courage to post until now. My dad was diagnosed with pancreatic cancer in july and since then life had been like a really bad dream, everytime we think that things are bad, we have been hit with even worse news. My dad has been unwell since about easter and after various illnesses and tests we were finally advised that he has non operable pancreatic cancer.

Originally although devastated, we were advised he could have chemo to reduce the tumour, unfortunately this made him so unwell that he ended up in hospital. It was then that we were advised that the cancer has spread towards his stomach and that he only had weeks to live. I find this so difficult to come to terms with and have been signed off work, i think it is more important to spend time with my mum and dad right now.

Since then he has been at home, but he has lost so much weight and is so weak. They decided not to do anymore chemo as he is not well enough. We managed to get a light weight wheel chair as part of his care plan and have been trying to get out occasionally to do the things he wants to do, eg trainspotting, which has been really good.

Things had been going ok until thursday this week when he had a fall and went unconscious, I had to call 999 and it was so scarey. He was taken to a&e and was given various tests, including a chest xray, ct scan and brain scan. Fortunately these showed no concerns, however they found that his blood pressure was low and they think this caused the fall.

He is now back at home and we are going to make sure he is not left alone again. He was released from hospital with specific instructions to eat, drink and exercise more.

Could anyone advise the minimum number of calories he should eat per day, everyone advises to get as many calories down as possible but how much would you recommend?

Also regarding liquids, how much should he have?

With the exercise, he can't really walk around unaided anymore buf could anyone advise what type of exercises he could do to strengthen his legs and arms?

Sorry for rambling, any advise would be appreciated

Julie

[cestrian]

Julie

Welcome to the forum from which you are sure to get plenty of support, love and advice. You do need to push for professional help for your Dad and this should be available through your GP or the hospital treating him. You don't mention McMillans but they also offer excellent help and can be accessed as above - until I saw them I'd no idea I was eligible for Attendance Allowance and a Blue Badge but they are wonderful with pain relief and practical help. Jeni and Dianne are medical professionals attached to this forum and will offer excellent advice.

My own twopennorth is that walking, even supported by his wheelchair, would be great exercise especially if he can get out when it has the added bonus of fresh air and mental stimulation which may also help his appetite. I'm sure there will be lots more suggestions from other patients and family members in similar circumstances to your own. Luckily I'm not yet there but I do find Lucozade palatable,digestible and calorie laden even though full of glucose, I also drink Roses lime juice by the pint. Most of us patients are a pain in the *ss as what we may eat happily today will turn our stomach tomorrow and vice versa. My wife has had to come to terms with this so that when I say how much I enjoyed something she no longer fills a cupboard with it but just buys one or two to avoid waste, particularly with perishable stuff!

Love and Peace

Mike

[Cathy]

Hi Julie

Welcome to the forum and I'm sorry to hear your Dad has been so poorly. My partner was diagnosed last December with inoperable pancreatic cancer although thankfully has managed to stay well so far (touches wood).

Mike has given very good advice. Do apply for a blue badge. My partner also gets DLA although if your Dad applies this would be called PIP now. Macmillans would be able to help you apply although you can do so via http://www.gov.uk. His GP or nurse (has he been allocated a keyworker, a specialist nurse?) need to fill out a separate form which will fast track this. You should hear back in a couple of weeks.

Others on here can give you far better advice than I can re what the eat but I know some have used certain types of energy drinks that are highly calorific. You could ask for your Dad to be referred to a dietician who could give advice (your GP could do this) Is he using creons? These are enzymes taken in pill form to replace his bodies own and they help food digestion and will stop weight loss caused by the body not digesting food properly. Again your GP can prescribe these. In some places they are prescribed as a matter of course for anyone who has PC.

I'm sure you will get lots more replies and, as Mike says, the nurses here can also provide a lot of very good comprehensive advice. You can email them on support@pancreaticcancer.org

Hope your Dad picks up soon now he's back home and that you are all getting support too. Contact Macmillans if you haven't heard from them yourselves yet as they should be able to help you out with a lot of this.

All the best

Cathy xx

[nikkis]

Hi Julie,

So sorry to hear your Dad has had such a rough time, and you are all affected by this horrible disease.

I would just echo what Cathy has says, gets some high calorie drinks prescribed, ring your Dad's GP's surgery and they should do that for you. Even if he only has sips of these they can help.Also a top tip I read was if you are giving him soups and milky drinks you can add some milk powder to push up the calories, have done this for my husband and he hasn't noticed!

The most important thing is to find things he enjoys to eat and drink, but as Mike says don't buy masses of something as preferences can change daily, I currently have a fridge full of lattes that my husband has gone off!

Take care of yourself as well,

Nikki

[Bee]

Hi Julie,

Welcome to the forum, you have come to the right place!

I am sorry yours dad is so poorly, as others have said I hope you can get some support from Macmillan or your local equivalent. My husband has high calorie drinks prescribed by the gp 400 calls in 200ml , they do a juice or milkshake variety.

Also creon supplements ( enzyme supplements which are taken with all food), they halted my husbands weight loss. Again they can be prescribed. Keep us posted, everyone here is on the same journey as your family.

Take care

Bee xx

[belgrade]

Hi Julie,

Sorry to hear your Dad is so poorly. Eating can be a real problem and I would echo the other suggestions that have been made. My husband had difficulty eating and had a very poor appetite and as others have said, what he enjoyed one day could make him ill the next. However, he seemed to tolerate tomato or chicken soup quite well and I would add cream to it. He also enjoyed crumbles, sponge puddings and custard, strange, as before his illness he rarely ate puddings. Perhaps this is not advisable, but the important thing is to try to get as many calories in the least amount of food. Dave also enjoyed the high calorie shakes made up with full cream milk, though he felt these were very filling. He was unable to eat meat, but could eat eggs and again, try to pack as many calories as possible with cream, cheese etc into omelettes. My husband was diabetic and also had Crohn's disease so food was a real problem. However, our GP and his dietician advised that it was more important to try to ensure he had as many calories as possible and not worry too much about his sugar levels. I kept a daily record of his food intake to try to identify any patterns or certain foods that triggered sickness or constipation. This was also useful when discussing his diet with dietician, DN, GP etc. I think the bottom line with diet is that it is very much trial and error!

Take care and I hope your Dad will improve.

Hilary x

[PCUK Nurse Jeni]

Hi Julie,

Welcome to the forums, and thanks to all our wonderful "forum family" for the fantastic advice on here.

Would echo all that has been said, but will also email you directly with a bit more information on things.

Sorry to hear about your dad's fall - could be a combination of things, but not uncommon for this to happen.

Kind regards,

Jeni, Support Team.

[EmmaR]

Hello Julie glad you have joined us though its a place know one wants to be but all I can say its the best place for support and advice and rantings I have many of those! and we are all on same path as you so good luck but as you are finding out we need a bit more than that .

Love Emma x

[LindaH]

Hi Julie,

You are spot on with your title 'Such a horrible disease' and I am so sorry your dad is struggling especially with eating.

At my lowest times I found that Complan was the only thing I could stomach. I avoided Chocolate, but other than that it has served me well and you can drink it slowly so that you don't over fill your stomach.

I hope you may find this useful.

Linda ((hugs)) to your dad.

[PCUK Nurse Jeni]

Hi Julie,

Just checking that you received my email,

Jeni.

[jules 2015]

Hi

Thanks everyone for your kind words, support and advice. My dad is under care of GP and has both a Macmillian nurse and other nurses which visit him regularly. He is also getting the attendance allowance and has a blue badge, which has really helped with hospital visits and visiting places.

His pain relief seems to be under control, he has slow release morphine tablets, however they do make him tired and confused at times. He is also on steroids and tablets for his sickness.

He really struggles to eat and tends to eat custards, cream caramel, fortisips, soups and his breakfast cereal. My mum has stopped stocking up on things he fancies as like some of you have said his taste changes daily, he too mainly eats sweet things now, when he didnt eat puddings before his cancer. Mum is trying to get as many calories down him as possible which varies between 1000 - 1500 daily but he is still loosing weight, being sick and getting weaker, this seems to be worse since his fall. He is on creons but I wonder if the dose is correct? He only weighed 9 stone when we went to the hospital today.

My dad has 3 fortisips a day, is this the best type of high calorie drink or are there any others he can get on prescription? Or at health food shops?

Since dads fall he has become even less steady on his feet and has been getting numb legs, we have been to the hospital for tests today which has revealed that he has blood clots in his groin, they are starting him on injections daily to break down the blood clot. Bless him its one thing after another, he also has a chest infection which he cant shift. He is on his second course of antibiotics but doesnt seem to be able to shift it..

Jeni - could you send me the email again please as I haven't received it. Let me know if you need me to confirm my emsil address.

Thanks again everyone I really appreciate your support

Julie x

[Cathy]

Hi Julie

Glad things seem in place for your Dad and there is support there for him, you and your Mum.

Creons, most people take 40000 per meal, although you can take more (or more than you need) as they will just pass through your body.

A number of us on here have experience of blood clotting unfortunately. It is common with this type of cancer. The injections can be a bit stingy but do the trick (or they did in my partners case, he had a clot in his arm). I wonder if your Dad's numb legs are connected to his blood clots?

Others on here, or the nurses, will be able to give you advice re high calorie drinks I am sure.

Best of luck. It sounds as if you and your Mum are coping very well. Hope your Dad picks up soon and can shake off his chest infection.

Cathy xx

[Jwilson]

Julie, hi forceval is quite a good wee orange flavoured drink. Packed with vitamins and minerals. Also calshakes has your dad got those? My hubby hated the shake things mind you and I gave them all back to the pharmacy. I just read everyone's posts and second all that they are saying. Good luck

June W

[jules 2015]

Hi

Dad is now really struggling to get upstairs. Went round last night to help Mum get him upstairs. mum has asked for occupational health and the Macmillan nurse to come round again, is support available for someone to come round each day to help with getting him upstairs? Me and my husband can help out most days but worried what would happen if we are out.

Julie

[Cathy]

Hi Julie

Your local authority (probably the adult social care service) could do a carers assessment for your Mum to give her some support. You could also talk to them about the help they can give your Dad - they could get someone in at certain times of the day to help (e.g help to get up and washed, helped to bed etc).

I think I would talk to Macmillans first as they will know who to contact for your area, particularly as they are already involved.

Good luck

Cathy xx

[Jwilson]

Ok hi. About the stairs. My husband fell downstairs last week and could have killed himself so you need to be so so careful. A physio called with us a few days ago and I asked her advice about the stairs. She told Bill to turn and go down one step at a time sideways. She also told me to put a chair at the top of the stairs and one just on the little turn on the stairs. This might help a bit until you get to speak to a professional! Bill finds the stairs very very difficult. Last night I got behind him and shoved! His problem is breathing as he has clots on his lungs and also massively swollen feet and ankles.

June and good luck!

[jules 2015]

Hi

I can't believe that I am typing this already but my dad lost his battle to fight this terrible disease last night. He developed blood clots and pneumonia and was unable to fight anymore. We were there with him every step of the way. It was just so cruel, he was the best Dad in the world and didn't deserve this.

Julie x

[Bee]

Hi Julie,

I am so sorry to hear your dad has passed away. Of course he didn't deserve it, and neither did you. It is such a cruel disease.

As you say you were with him every step of the way, And I am sure you did everything you could to help him, I hope you have lots of support around you.

Take care

Bee xx

[cestrian]

Dear Julie

So sorry to hear that your dear father has sadly lost his battle against this damned awful disease. My sincere condolences to you and your loved ones and may you find the inner strength to guide you through the days to come.

The fact that the pain and suffering a loved one was experiencing is finally ended is often a source of some small comfort and maybe this thought will help in coping with the natural torrent of grief. You have been a wonderful, caring, daughter and have done everything possible for your Dad so please try to think of all the good times you had - I know that is what I want from my own family when the day finally comes.

You know you have the virtual love and hugs of us all to surround you

Love and Peace

Mike x

[Cathy]

Hi Julie

I echo the others sentiments and am so sorry to hear that your Dad lost his brave fight.

I hope you and your Mum and the rest of your family are getting lots of love and support at this sad and difficult time.

Thinking of you and sending lots of virtual love and hugs

Cathy xx

[KATB]

Oh Julie I am so sorry

Having lost my dad only 3 weeks ago I know how hard it is. I still have not really got my head around it or processed all that has happened. I think it will be a long road but we are all here for you and each other so please keep posting.

Thinking of you and sending love

Kate

x

[J_T]

Hi Julie, I am KATB's mum so what she said goes for me too.

I am so, so sorry for the loss of your beloved dad.

Julia x

[nikkis]

Dear Julie,

So sorry to hear about your Dad. Thinking of you and your family,

Nikki

[Slewis7313]

Julie, I like all your other friends am devestated to hear of your terrible loss.

My thoughts too will be with you and your family at this difficult time.

Steve

X

[belgrade]

So sorry to hear about your Dad Julie, my thoughts are with you and your family.

Hilary x