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Re: Don’t know where to start

Posted: Tue Jan 09, 2018 10:45 pm
by Dandygal76
Hey Christine,

All these tablets etc and the illness can play havoc with the bowels. You need to get the GP on board but also try Imodium and stuff over the counter as it will not hurt your mum and is a very safe medication. As for the smoking - I am an ex smoker for 6 years and used to smoke 30 - 40 a day since age 14 - it was a nightmare of stress and multiple tries to quit. It is the least of your worries and will probably cause stress to you all to try and get her to quit. A lot of the problem is yes she has been on the patches but that does nothing to overcome the psychological factors. In all honesty - I would probably start again if I was stage 4 pancreatic cancer because I would still love an excuse to have just one more!

I once paid a fortune to go to an Alan Carr stop smoking 2 day course and the most interesting thing that happened, even though we knew we were to quit the 2nd day, was that they told us to smoke a cigarette and then when we finished they said that was the last cigarette we would ever have. Everyone agreed that the panic and stress was immense at hearing that. It was not the last cigarette of the course but a show that it is a mental addiction you have to overcome because we had just fed the addiction beast. x

Re: Don’t know where to start

Posted: Wed Jan 10, 2018 3:21 pm
by Christine49
Thank you.
They’ve prescribed some Creon tablets to have every time she eats but that side of things seems to have settled down before she’s started them so we’re wondering if it’s been from all the meds and antibiotics last week.

We’ve got the community palliative nurse and the district nurse coming in tomorrow so hopefully we can discuss it further with them. Plus they’ve sent her some Fortsip and Fortijuice to try out the different flavours.

So far since being home she has been eating quite well. She’s never been a big eater anyway so it’s not too different but I’d like to see her put a little weight on to get back to her regular size before any treatment starts.

She’s decided to stick with the nicotine patches but had a wobble or two and has used her e-cigarette which does seem to get her through those patches. The hospital told us she also has COPD now which she didn’t have on her last X-ray so I guess that’s another reason to stay off the cigs but we do appreciate that if she wants one it doesn’t make much difference now anyway.

On Friday she has an appointment at the cancer centre to meet the oncologist. What sort of thing will be discussed at this appointment? I want to prepare myself a bit. I assume we’ll be finding out if she is suitable for chemo? We now know it’s adenocarcinoma from the biopsy report.

Thank you all again. It has helped enormously being forewarned on some things, making it all less shocking as I’m able to reassure my parents about what is happening and why.


Re: Don’t know where to start

Posted: Fri Jan 12, 2018 11:52 am
by AndAde
Hope all goes well with your mum today xx

Re: Don’t know where to start

Posted: Sat Jan 13, 2018 11:19 am
by Veema
Hi Christine...apologies for not replying sooner, but you'll probably have noticed we've all been rallying round Mo...I hope things went well on Friday.

Glad to see that the tummy issues have settled...creon should also help keep things normal in that respect. I'm not sure if I've mentioned it before, but procal powders are great for adding extra calories to food and drink, so worth asking your dietician if you can try some of those and if she's not keen on the fortisip, there are other supplements she can try.


Re: Don’t know where to start

Posted: Sun Jan 14, 2018 10:10 am
by Christine49
Thank you for your replies and kind thoughts. The appointment with the oncologist went as well as could be expected I guess.

She’s to start chemo soon, next week we’ll have an appointment all about it and then she starts chemo that is tablets and IV a few times, 3 weeks on 1 week off I think.

However the past couple of days she’s gone a bit down hill to me. Her appetite has gone again and she’s had more pain and less energy. I’m concerned she’s not drinking enough either. Her bowels are either doing nothing or it’s all go, plus they’ve started her on iron tablets as she’s anemic as well.

The district nurse is due out on Tuesday but do I wait for that or call the local palliative care team before then?

Mums currently down to 7st from 8st. She’s always been very slim and used to regularly weigh in at 7st years ago but I’m terrified they’ll say she’s too weak to start chemo if she doesn’t start getting any strength back soon.

We’re supposed to be using this week to get her eating up and her walking around more but it’s going the opposite way. I just keep hearing her oncologist saying her pancreactic tumour is ‘very large’ in my head (though apparently the liver function isn’t too bad considering). I think the pain is making her not eat. I’m trying to get Fortisip drinks in her but she’s always had a bad relationship with eating and drinking properly.

Are we already too late to help in anyway??


Re: Don’t know where to start

Posted: Sun Jan 14, 2018 11:06 am
by Dandygal76
Hi Christine,

Don't wait to get people involved, call now - you need to nip these symptoms in the bud in my experience. They can get the pain under control - she should not be in pain. Perhaps also ask for some steroids as well to get her appetite up and give her some energy before you start treatment? I am not sure of the protocols but it should help. The chemo should help with the pain etc hopefully and trust us... we have all had the panic of whether they will give chemo but as long as her bloods are okay and she is walking they should go ahead.

You can also be asked to be referred to the hospice for drug / pain management. It does not mean what people think re hospices... they will get it all sorted and then she can come home on a new regime. Our hospice has outreach and actually do visits at home.

Try not to push mum too much and just find small bites of high calorie like eggs etc. We used to also drizzle olive oil on things without saying. Stay strong and see what next week brings and have faith it could turn around with a bit of Chemo.


Re: Don’t know where to start

Posted: Sun Jan 14, 2018 3:04 pm
by Veema
I agree...always ring if you are worried...if it turns out to be nothing, then there's nothing lost...there's no need for her to be in pain, there are many different types of painkillers they can try.

The eating thing is something that has frustrated us all...appetite seems to go out of the window with this disease and you need to find things she will eat or drink happily and then try to boost the husband lived on glasses of milk and bowls of cereal for many a while...milk was heaped with procal powder to make it more calorific. Everything she eats needs to be the full fat version, which is really hard in this day and age as everything is low fat! Rice pudding made with full fat milk is a good one. Google high calorie foods and that should point you in the right direction.

Good luck


Re: Don’t know where to start

Posted: Tue Jan 16, 2018 7:44 pm
by Christine49
Thank you again.

We’ve had an extremely rough day today after a couple of ‘not too bad’ days where we were even talking about a short trip out tomorrow which she hasn’t managed since being home from hospital on the 4th Jan.

Last night brought more pain and this morning she was in a real state, basically wanting to give up and not even attempt to try chemo. I hate to say this but she’s always had a child-like reaction to being ill and it’s difficult to help her when she’s got herself into a state.

She decided this morning she wasn’t going to eat anything at all today and I’ve spent all day just trying to cajole her into a little of something and at the very least some of the Forijuice.

I called the palliative care team first thing and they called back with the suggestion of upping her dose of slow release morphine and upping her oramorph. Mum is insisting the oramorph doesn’t help her at all and makes no difference to the pain, just makes her sleepy and nauseous. They’re also changing her anti-sickness meds again to see if that helps. The increased dose starts from this evening. They wanted her to take 5ml of oramorph but she has refused it all day and I’m not convinced she’ll take it during the night either.

The district nurse came in as scheduled as well today and took all her obs which seemed okay then her GP also turned up at the same time (we were only expecting a phone call).

As I suspected she’s still got a chest infection so he’s put her back on antibiotics for a week and told her to stop using her nicotine patches as they are probably interfering with her sleep and causing her weird dreams (we put it all down to the morphine).

I’ve just FaceTimed her and she doesn’t look well at all and I’m not sure what to do from here. The palliative nurse is coming in on Thursday to see how she is doing. Are we just hoping the increased morphine / lack of patches / antibiotics will do their job or is there anything else I can do?

I’m sorry to say I got a bit narked with her earlier as I sometimes feel she won’t help herself and has stopped trying with food and fluid (the fluid part worries me the most). I’ve been tetchy with my dad as well today as I am not coping well and feel like a horrible person all round.

She definitely seems worse at night when I am not there. Is it common to have more pain at night or is part of it from anxiety?

Thank you all xx

Re: Don’t know where to start

Posted: Tue Jan 16, 2018 7:59 pm
by Veema
Coping with a sick person is very trying on the patience front...we'd be lying if we said we'd never lost our temper or had a good moan about it so don't beat yourself up about it.

There does come a point where we, as carers, just have to let it go...we have to stop trying to make them eat and go with the flow. The palliative care nurse needs to know everything that's going on and they will be able to help best they might be better if they could come and have a chat with your mum about making sure she takes her meds etc. If she continues along this road, she wont be fit enough for chemo. But, she may decide she doesnt want it and tough as that is, you do have to respect that decision.

Hopefully, the antibiotics will buck her up a bit and she starts eating a little again.


Re: Don’t know where to start

Posted: Wed Jan 17, 2018 8:41 am
by Christine49
Thank you Veema, that really helped to read that last night x

Mum generally just doesn’t feel well, we’re thinking it’s the chest infection that’s making it all harder work so we’re just concentrating on that for today, keeping her comfortable and warm. She slept a little better with the increased dose of slow release morphine.

I hope that controls the pain again and she sleeps better as that will help her mentally more than anything. The district nurse mentioned perhaps a sleeping tablet if the nights are difficult. I’m not sure mum will go for another tablet and the risk of wetting herself at night might be a factor but maybe that will help?

Yes we are of course leaving the chemo decision up to her but when it was offered on Friday she was keen as my sister just got engaged and she would like to see her married ... I think the pain got the better of her yesterday. I deal with chronic pain myself and have for over a decade so I know how it goes to be consumed by it but I just don’t want her making a decision like that when a few days later we can control things again, if that makes sense. It is so tough!

Thanks again xx

Re: Don’t know where to start

Posted: Fri Jan 26, 2018 7:49 am
by Christine49
Well you guys are certainly right in calling the PC journey a rollercoaster.

Mum’s palliative nurse suggested some steroids for her to boost her up a bit and they have worked a treat, given her some energy and appetite back for about a week now. She said she feels more like her old self again and now she’s finished a second round of antibiotics seems to have finally shifted the chest infection she picked up in hospital over Christmas.

We had two ‘random’ incidences of vomiting - one on the day of starting steroids where she was eating, didn’t feel sick but was suddenly very sick and then once again a few days later after eating a fair amount the day before and waking up feeling nauseous. We suspect both were caused by a combo of not taking enough Creon and being pretty constipated which now appears to be an ongoing problem.

We had the appointment with the chemo nurses a couple of days ago and Mum is now due to start chemo next week. We’re all terrified but equally keen to get it started. Such lovely nurses at the unit it almost makes it a less frightening experience.

Unfortunately yesterday we were told she’d need to come off the steroids in order to start the chemo which was a bit of a blow as they are making such a difference, she’s been pottering about and keen to get out for the first time in weeks. So it goes.

I am keenly looking into things like nanoknife but no idea if mum would qualify and find myself getting confused with conflicting information.

I’m trying to read up on everyone’s stories but I find I am getting too upset each time so please forgive me if I only spring in and out of the forum for help and reassurance.

Best of health to everyone. Xx

Re: Don’t know where to start

Posted: Sat Jan 27, 2018 4:20 pm
by Christine49
If anyone’s reading I have a question from my sister who wants to get married very soon so mum can be there. She’s currently looking at the end of March.

Mum’s chemo starts next week so we have no idea how she is going to respond to it yet but my sister wants to know if it’s better to book her ceremony for the week off from chemo? Mum will be 3 weeks on (IV + tablets) then a week off from everything before beginning again. The date options for her venue show for a Thursday which will either fall 2 days after the IV chemo or 9 days depending which week she picks.

Thank you. X

Re: Don’t know where to start

Posted: Sat Jan 27, 2018 9:09 pm
by Veema
I can't help as my husband had a different chemo, but would imagine it would be better on her week off as her body will be getting ready for the next lot.


Re: Don’t know where to start

Posted: Mon Jan 29, 2018 10:12 am
by PCUK Nurse Rachel C
That's lovely news that your sister is getting married! What a lovely gesture too, to try and fit in around Mum and her chemo....I'm sure your Mum is very pleased!

I guess in an ideal world, it might be nice if the ceremony was booked for Mums week off chemo, where she might be feeling slightly better in herself. As you may know, sometimes chemo dates can change(due to side effects and blood counts), however, if Mum just lets the Oncology team know that she has a very special occasion to attend, they should be able to work the chemo around Mum.

Sometimes, people can also have an extra week off chemo for special occasions or for holidays, so do discuss this with Mums team and take this into consideration. I'm sure the Oncology Team will do everything they can, to work the chemo out around Mum.

With kindest regards,

Rachel. C.

Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
support line: 0808 801 0707 (Monday-Friday: 10am-4pm)

Re: Don’t know where to start

Posted: Thu Feb 01, 2018 11:57 pm
by Dandygal76

I am glad mum was better on steroids. I have not been on much but re the wedding, I would book as you see fit and then just ask for a break. If it was me (with hindsight) and you really want mum to enjoy it then I would have the week off before as well and her dr's should go for that. People have time off chemo all the time for all sorts of reasons and I know it seems frightening to do so but if your mum is looking forward to it, just go for it. It is really hard to see when you are down the rabbit hole that it prob won't effect anything too much but will create a beautiful day you can all enjoy. Also, dad always took steroids for such occasions so make sure you get some for it! It will make the day more enjoyable for mum.