My Dad

[Gill1301]

Dad's first session isn't until this afternoon. I am at work thinking about it constantly, probably making all sorts of mistakes too.

They gave Dad a nice new thermometer at the information session so Mum said she will make sure they check his temp daily (is that enough?)

Thanks once again for all the support xxx

[rachelqt]

Hi Steve and Gill

Really hope it all went smoothly for your Dad today. I know my dad and the family were so nervous on his first treatment, but thankfully it ended up a good experience.

Chat soon

Rachel x

[Steve983]

Dad had his first infusion of chemo yesterday afternoon at about 5pm and I'm pleased to report he has had no ill effects at all so far. He woke up this morning feeling the same as he had the previous morning and at the time of writing is feeling fine, I know there may be delayed reactions but this is better than I dared hope for.

The other good news is that since he's been taking the Creon his appetite has improved and he is looking forward to meal times again (like he always used to!). He also gained some weight last week so lets hope he can gain even more now. (It's funny, Dad's been overweight all his life and we've always been trying to get him to eat less - now we're practically force feeding him custard donuts!)

Thanks again for all the support here. It's true to say I think that if we hadn't known about the the things to ask for, like the Ensure drinks and the Creon we wouldn't have been offered them - or at least it would have taken longer to get them. It's a great comfort to know what we are doing all we can for him!

[PCUK Nurse Jeni]

Hi Steve and Gill,

Good news that your dad is coping well so far with chemo. Long may that last. Good that he is enjoying food again, and putting weight on.

Gill, regarding the temperature, once a day is ok, but also, if he is feeling unwell at all, the first thing to do would be to check his temperature. Careful also that he does not take paracetamol without checking his temperature first, and letting the chemo unit know. Paracetamol is a very good pain killer, and safe to use as directed, but it also lowers a temperature. This can mask any signs of what is going on in the body ie: underlying infection. The temperature will settle, but the cause of it will not.

You may like to have a look at the following link: http://www.pancreaticcancer.org.uk/information-and-support/treatment/treatment-faqs/starting-chemotherapy

Some of the information may be old hat now for your dad, but it will still help to give a better understanding of chemo. Also, http://www.pancreaticcancer.org.uk/information-and-support/treatment/treatment-faqs/common-chemotherapy-questions

This gives some of the frequently asked questions when someone is undergoing chemo.

Hope you find it helpful.

Jeni.

[laura]

hello steve and gill, lovely to hear that dads ok from 1st chemo, its great to get it overwith isnt it, and realize its not always so terrible, tho i realize some peoples experiences are very differant, any way good for dad and keep feeding the doughnuts. love laura xx

[Gill1301]

Dad has now had 3 sessions, had to miss one as he had a chest infection.

He is feeling very tired now, and his appetite is still not good but is keeping strong and determined.

[laura]

hi gill, glad things are still moving along, chemo will make dad tired and possible affect his appetite, it is after all a poison, and having had a chest infection its bound to hold him back a bit, dont despair, its a steep learning curve this chemo! but where would we be without it eh?

you may find that the end of the cycle things seem worse, i think thats why the week break, but not every cycle may be the same, so chin up you and dad, and your brother,and meet this dratted thing head on lol.

best wishes to you all love laura x

[rachelqt]

Hi Gill and Steve

Glad your dad is still feeling positive. After the first month of Chemo, we found an improvment with my dads appetite, it slowly got there. After 4 months of chemo he is now eating quite well and has put back on a stone and half..so there is still hope for your dad! Sorry to hear he had a chest infection. Its very easy to pick up these infections on chemo. My dad has a nasty cold and cough at the minute, he is so miserable with it and seems to be getting him down a bit. Hopfully it will pass soon.

Good to hear from u and hope your Dad picks up soon..Rachel x

[Gill1301]

Thanks again Rachel & Laura,it really does help hearing about your experiences battling with this dreadful "thing" Am really hoping Dad does get his appetite back soon, it's so strange seeing a man who always had eaten everything put in front of him (and more!) disinterested in even the most wonderful food.

[Steve983]

Things were going quite well but Dad has been feeling very poorly this week.

He called the hospital yesterday to talk to them and they sent an out of hours doctor out to see him. The outcome is that he is ok but it is the treatment that is making him feel very tired & dizzy and his appetite being very poor now. The hospital rang to say they are considering putting him on a lower dose of the Gembitacine with a view to reducing the side effects. It seems all we can do is hope he will improve and that some of the many drugs he is on will somehow improve his appetite.

[Gill1301]

Bigger setback now.

Dad has been admitted to hospital after becoming increasingly weak to the point where he couldn't even get out of his chair to go to the toilet. Poor Mum has been doing her best but at almost 82 it's a struggle for her.

Currently he is waiting for a bed on an antiboitic drip (for his ongoing chest infection) and oxygen.

None of know what is going on and whether he will be strong enough any time soon for some more chemo.

I feel so helpless

[Nardobd]

Dear Steve and Gill

I don't want to give false hope but it is quite frequent to find that chemo leaves one feeling weak and tired, and with a chest infection too, I'm not surprised your Dad is struggling at the moment - let's hope that after a good rest your Dad will feel much better.

One of the worst things about someone you loving having this disease is just how helpless and useless you feel. Rest assured that the best thing you can do is continue to show Dad your love and support and to let him know that you'll make sure that Mum is looked after too, so that he doesn't have to worry about her.

Thoughts and prayers coming your way and don't forget we're here if you need to talk.

Love

Nicki

[Gill1301]

Thanks Nicki.

Dad went into hospital on Monday night, currently on the Acute ward having iv Antibiotics and oxygen. he is very confused and still so very weak.

Mum is doing ok, considering.

We hope he will be put on a normal ward later today. Goodness knows if and when he can have any more chemo until this chest infection is finally gone

[louiepc]

Ah Gill

I am sorry your Dad has had this set-back. It is very worrying how quick these infections take hold, and also quite shocking at how helpless we really are.

your Dad is in the best place, hopefully with careful monitoring and iv antis, drip, etc. He should get over this infection no problem. Once he's over the infection and his body is strong enough to deal with the chemo he should go back on it.

I know my mum was on Gemcetibine, and quite a low dose at that, I think cos of the size of her frame, her body couldn't take too much, and it does completely wipe you out. She had an infection just before going on it, and had to make sure that she was completely better as I'm sure that you are aware it wipes your immunity out, before she was allowed to continue treatment.

Good luck, hopefully your mum gets lots of rest too, whilst your dad is being looked after. Have you got carers coming in? If not, it may be a thing to ask for. I know its not the nicest and you want to carry on doing things yourself, but with your mum's age, it may be a help. Maybe speak to your Macmillan nurse.

louie x

[Steve983]

Slightly better news now that Dad was moved from the Acute Medical Unit to a normal ward while we were there this afternoon. He is awake and more lucid although a bit confused and has been rather delusional and even a bit violent last night apparently.(Not like him at all).

Rather frustrated that he is not getting his energy drinks because even when he is in hospital they cant get hold of the dietician to prescribe them for him - we will have to take some more in tomorrow! Ridiculous! I have to say I am getting a bit frustrated at the lack of joined up thinking in the system at the hospital and so far the Macmillan nurses have done nothing for us, to be able to get hold of them on the phone is hard enough. Lack of resources I guess but thats another story.

I think the biggest problem we have right now is Dad's lack of appetite, he is virtually refusing all food - how do we get him to eat? Any ideas welcome - many thanks!

Steve

[louiepc]

Hi Steve

Does your hospital have a hospice linked to it?

Our one, actually has the hospice office situated in the hospital. They have there own care team for patients who are in patients, and then when they are sent home/hospice they have the nurses that see the patients then.

I did find, that if you don't ask for things, it gets overlooked, whether on purpose or not. Ask, ask, ask, don't leave things to chance, and if you get to be a pain in the bum, probably all the better - at least that way things get done, and they get you out of their hair. Think about "continuing-in-care" too, you have to ask for this, it is basically on a means/need tested basis, if your dad is unable to look after himself due to health issues - yep tick box there - you should be eligible for it. They then pay for any care and support that is needed. This could be carers coming in 3 times a day, equipment in the home that may be needed. even if things went really bad it could mean payment for staying in nursing homes etc. It is a major thing, and one huge less worry to be thinking about at this terrible time.

I hope your Dad, perks up soon. As for food, Mum was a bit of a nightmare, when it came to food, she would say she wanted one thing - we'd go out get it for her, then she decided - no, don't want that. grrr. Anything palatable, soups, rice pudding, yoghurts.

Take care

louie xxx

[laura]

hi gill and steve, my goodness, things have been happening to your poor dad, so sorry for all of you, cant come up with any suggestions that nicki and others havent already suggested,sorry,

do send my good wishes and thoughts to all of you, and hope things buck up soon,

love laura x

[Gill1301]

Bit more good news, Dad is now sitting up in a chair and finally eating a little!

Let's hope he will be able to come home soon.

Thanks again for all the support

[rachelqt]

Hi Gill & Steve, glad things are looking up for your dad. Its all a step in the right direction! Hope he gets home soon..Rachel x

[Steve983]

Thanks for the advice folks. Dad is improving a bit each day and will be reviewed again on Monday by the doctor. I just hope he can get strong enough to come home again sometime soon. We are trying to contact the Macmillan nurses again, Mum called them yesterday but got an answerphone message that they are unavailable until Monday! We'll keep trying...

[ali40]

Hi Gill and Steve,

Hope your dad is back home soon sounds like he's really been through the mill lately.

I'm new to all this mum had her first chemo session last week so it's a steep learning curve for us, but helps to read other peoples stories so we are even more aware of what can happen and try and react quickly enough.

Best wishes

Alison

[suef]

Dear Gill & Steve,

I'm so glad your dad is making progress, hope he can be home soon. Must be so hard for your mother at her age.

Dear Alison,

I also get a lot of support from this website, there is so much information on these pages, and real, practical experience from people who have been through it! It is also great to know people are thinking of you and what you are going through.

Much love,

Suef

[laura]

hi gill and steve, do hope that dad continues to improve, seems like forever when things go wrong doesn't it?

you say mum got the answerfone when mum rang the mac nurses, i believe that if you leave a message it is passed to the nurse/s covering that day, perhaps you could ask for future reference, when you see the nurse?

hope things go well for all of you, cos what affects dad has a knock on affect on the whole family. love and good thoughts laura x

[Gill1301]

Sadly Dad lost his battle earlier this morning.

We spent the day with him yesterday as we were told he only had hours, but he battled on and passed away around 8am today.

We are all devastated as you can imagine.

[louiepc]

Dear gill and Steve, I am so sorry for your terrible loss.

Please accept my heartfelt condolences to all of your family at this very sad time.

Louie x