Don’t know where to start

[Christine49]

Hello everyone, I am glad to have found this forum.

My mum was officially diagnosed with PC on Boxing Day after a few months of upper abdominal problems and pain at the side of her ribs for about 6 months.

We’d been drip fed a little information following an ultrasound and CT scan by her GP and following one trip to A&E so we already knew what was coming but after some severe vomiting and not eating for about 3 days she was rushed into hospital and they finally told us. We know there’s some lymph node involvement and a spot in her liver.

Unfortunately we’re already familiar with the condition as my mother-in-law passed away from PC only 4 years ago.

I want to gather as much information as I can so when I attend the specialist appointments with her I know what questions to ask as she’s not very good at making her point at times (especially in front of doctors).

She’s still in hospital at the moment where they’ve determined the vomiting was due to the oramorph (and previously co-codamol) she’d been prescribed and they’ve changed her over to slow release morphine pump and some gabapentin which so far is much better - in fact she can’t stop talking at the moment!

She’s due a biopsy on the liver spot once she’s gone 5 days without her blood thinners to ensure it doesn’t cause a clot (I think?) and then they’ll know which type we are dealing with.

Anyway, any ideas or pointers for questions we need to ask will be gratefully received.

Thanks you everyone.

[Veema]

Hi Christine...sorry to hear about your mum.

I think you need to know exactly what you are dealing with, where it has spread to etc. You can then find out what treatment plans will be available...there are various chemo options and some centres offer radiotherapy. I would say that because of the lymph node involvement and possible spread to the liver you are looking at palliative treatment only.

The other thing I would suggest you ask about is getting the palliative care team on board, especially as she is suffering from pain. In our area the hospice nurses carry out this function, but it may be Macmillan or some other agency where you are. They will also be able to help with any benefits she may be entitled to and things like a blue badge etc.

You probably know from dealing with your mother in law, that the long term outlook isn't great, but a good quality of life can be had on chemo...it just depends how well she tolerates it. You do have to be prepared for her not wanting to go down the chemo route, and that's ok...have a read of Marmalade's thread 'Our journey without chemo' which will give you an insight into that side of things.

Keep us posted.

Vx

[Marmalade]

Dear Christine,

So sorry to hear your news, it doesn't matter if it is something you have encountered before, you only have one Mum and it's ghastly news, my heart goes out to you. I'm glad you have found the forum and hope you will get comfort and the information you seek from it.

One of the many issues with this diagnosis is that there is no set pathway to this disease, as you read other people's stories you will see that that no two manifestations are the same which makes it very hard to ask the right questions. Veema has given great advice, especially about getting form DS1500 from your care team, Macmillan finance will help you deal with it over the phone and will follow up. The suggestion to make contact with the palliative care team is also really good advice as they often do courses in caring and coping which will help you recognise what is going on and how to best cope with common issues like exhaustion, nausea, pain etc. and I would add that an email or call to the nurses on here would be a good idea as they are really good at this sort of advice, what to ask etc and at interpreting the responses.

The reason they want your Mum off her warfarin is that it thins the blood and therefore increases the risk of bleeding and haemorrhage in any procedures. It sounds like your Mum is being treated for hypertension (blood pressure) or another heart condition. In due course it may be suggested that she come off some of those medications which are designed to prevent strokes and heart attacks to make way for a broader range of symptom control drugs for her PC.

Very best wishes,

Marmalade xx

[Christine49]

Thank you for your replies. I have a million more questions but am getting confused as the information we’ve been given in the hospital has changed a few times and we’re all exhausted so I don’t know if I am coming or going at the moment.

Mum had a decent day yesterday but seems to have gone backwards a bit today. Seems totally manic, shaking and loopy with anxiety. Forgetting to tell me when she needs the loo until it’s too late and very, very weak again. She’s not gaining any strength. I think both the gabapentin and diamorphine are causing these symptoms but they are also stopping the terrible pain so it’s a no win.

Mum had a small TIA a few years back, hence the blood thinners. She’s meant to go home tomorrow and then back in on Tuesday as an out patient for her biopsy once her blood is less thin but I honestly don’t know how we’re going to manage that if she can hardly walk still by then.

I asked about all the numbers and details for the palliative care team etc but the consultant (not the one that is due to be her regular one) actually laughed and said no point as it’s a bank holiday. Is that right??

Should I accept that she needs to go home if her sickness and pain is under control or be pushing for her to stay as she’s so weak? My sister is making herself ill staying at the hospital every night. I’ve got fibromyalgia and a few other health problems so physically I’m coping terribly as well and my dad is not great at being responsible for things (plus he’s really hard of hearing) as it’s always been mum that’s covered that side of life so it’ll fall to me and my sister to care for her at home and today I feel like we can’t cope.

Perhaps it’ll be easier at home because it’s her own bed and toilet etc. I’ve ordered Tena Lady, bed pads, nicotine patches and a loud hand bell for her to call for help when needed. Anything else that would be handy?

Thank you for any advice you can give.

[Didge]

Hi Christine. I think he’s right about the palliative care team. I wouldn’t expect anything over the Bank Holiday weekend. As far as your mum being discharged tomorrow if you have concerns about how she/you will manage you must voice them. It may be that if your mum is still very weak tomorrow they won’t discharge her anyway. Is she eating now? If not are they giving her Fortisips or something similar? X

[Marmalade]

Dear Christine,

I'm sure you are finding this all very difficult, it is not easy for any of us. If your Mum's symptoms are under control (all of them) and if she wants to be cared for at home then the hospital will allow her to go home but should ensure a care plan is in place if there is no one able to care for her. If her symptoms are not all under control then it may be suggested at some point that a short term bed be sought in a hospice to get your Mum comfortable and settled and in a position where she can be cared for at home. Hospice beds are scarce as they are fundamentally charities working with, and in some cases supported financially by the NHS.

Your Mum is entitled to attendance allowance at the full rate and this can be used to help pay for carers or other services you may need such as laundry - how your Mum spends it is up to her. To claim this allowance you need form DS1500 which is supplied by your hospital specialist nurse or by your GP.

You might want to think about a monitor (like a simple baby monitor) so that you can have it nearby whoever is caring for her so you can hear if she needs help especially helpful during the night. You can also ask your GP to arrange an assessment by the local community nursing team after which they will supply any aids you may need such as a hospital bed, walking frames, raised toilet seats, commodes, perching stools or seats for the shower, pads for the bed etc. Sadly no one teaches you howe to change a bed if they are mobile or how to keep them clean. There are techniques to make it really easy but you pretty much have to watch carers or ask someone who has done it to show you. If your family needs help caring for your Mum you need to speak to your GP who is ultimately responsible for her care. The GP will set in motion the assessments and support free on the NHS, Macmillan Finance, the number for which is on the Macmillan website can help you claim the attendance allowance and any other benefits which your Mum or her carers are entitled to and these are there to pay for additional support she may need.

If your Mum is going to be cared for at home it may be helpful to take out any unnecessary furniture from the bedroom to give you plenty of room for a hospital bed, a comfy chair or bed for family carers to rest in, space for a commode and to work from both sides of the bed. A radio or TV can also help to pass the time. We found a baby's toothbrush very effective for teeth cleaning and moistening the mouth. Two smallish plastic bowls for washing and rinsing water and two flannels and plenty of wet wipes and small towels are good for keeping Mum fresh. You may also want to get some rolls of small plastic bags and some disposable gloves to dispose of soiled bed pads and debris prior to putting in the household waste.

If your Mum is at home during a bank holiday and needs medical attention you call 111 and explain your need and they will get a nurse or doctor to contact you.

After the holidays it may be worth looking at any caring courses.

I know you feel you have to be doing something but your concerns can perhaps be addressed by asking to speak to your Mum's specialist nurse or GP who should be able to talk you through her care package and clarify things that have been said. Some of that package will depend on what your Mum has told them about how she wants to be cared for and the GP and or hospital will put the plan in motion including contacting the palliative care team.

I hope this helps

Marmalade x

[Christine49]

Thank you for the great info, I’m making a note of everything so I can gather together what will be needed.

As it happens she’s still in hospital as we had a rough day yesterday. She had a chest X-ray as was running a temperature and turns out she’s picked up a chest infection at the hospital. She was extremely weak and wobbly and the nurse was getting her up and down to take her blood pressure which was very low then trouble with getting her on the commode (leakage problems) and she then fainted.

I do not wish to speak badly of the nursing staff because on the whole they have been amazing but we had a very grumpy nurse on yesterday and I am sure if I wasn’t there mum may have fainted off the commode and on to the floor as she wasn’t listening to her at all.

Got her back into bed and they monitored her all day, giving her antibiotics, extra fluid etc then she fell asleep about 2pm into a deep sleep and I couldn’t get her to wake up at 4pm so alerted the nurse who also couldn’t rowse her properly, called the doctor and ward sister.

Anyway long story short her bladder was retaining fluid and wasn’t flushing the morphine out of her system effectively plus they feel her dosage was a bit on the high side anyway for her tiny size. The nurse on during the day was supposed to be measuring her urine output anyway but it didn’t seem to happen properly. So catheter in and that has helped enormously, thankfully she perked up quite quickly following that.

She is still very dopey though. Is this the combination of chest infection and morphine (plus gabapentin, paracetamol, anti sickness and now antibiotics) or should I make more of a fuss that she’s zoned out? I almost didn’t yesterday and would have gone home without saying anything as no one else seemed too concerned but that has scared me a fair bit seeing her like that.

I ended up feeling very ill and lightheaded myself and my poor sister has had to take over today even though she stayed with her all of last night as well.

Her biopsy is in the morning, I am hoping they can wheel her there in her bed as I don’t think she’s strong enough for sitting around in a chair yet.

With regards the GP can I call the surgery and speak about her to her GP or does it have to be her doing it or both of us in front of the GP?

Thank you. X

[Christine49]

Oh one other question I have today (and I think I probably know the answer) but mum has been a smoker all her life and the 7 days she’s been in the hospital have been the longest she’s ever gone without a cigarette.

They’ve given her nicotine patches and I’ve got some ready for her for when she comes home (whenever that may be) but is it actually worth her sticking to not smoking now she’s begun, albeit enforced, or is there really very little point? Thank you.

[AndAde]

Hi Christine,

We had this dilemma. Adrian's consultant said there's no point in giving up the cigarettes, but when we spoke to our GP he said it would ease his symptoms if he gave up. Adrian tried and failed but he's cut down a lot.

Sorry I guess this doesn't help much xx

[Christine49]

Thank you that does actually help because if there’s any positive reason then I’ll try my best to keep her off them but I just didn’t want her to be struggling with that as well if there was no point.

I think also as she prefers to smoke outside it would help if that wasn’t a factor longer term.

[Marmalade]

Hi Christine,

You can ask for an appointment to speak with your Mum's GP. The GP does not have to share information with you but you can give him or her information on what is happening with your Mum at the moment and your concerns about how she will be cared for and kept comfortable. I was not a patient at my husbands surgery but his GP was very supportive and as Louis became less able to do things communications came through me, although I always made sure he and the GP had privacy when she attended him at home. We were also in email communication and I can't say often enough that you need to establish a good relationship with the GP and surgery staff.

As to the smoking, I don't know what age your Mum is but given the prognosis I would leave the smoking decision up to her. The damage is done now and if it gives her solace so be it.

Best wishes

Marmalade

[Christine49]

Thanks Marmalade,

That makes sense, I think I can get all that arranged.

Mum is home now. My sister has stayed with her for two nights but absolutely must go home tonight as she hasn’t slept in her own bed for two weeks.

I’m really worried as my dad is really deaf (I have now booked him a hearing test under protest) and sleeps in a separate room from mum due to their snoring habits. He just won’t hear her during the night and me and my sister can’t be there all the time.

The main problem is that mum has soiled herself a few times in the past few days and she’s not really sure why. She is on strong antibiotics currently as well all the pain meds. It’s very loose when she is going to the loo and she feels like there’s no warning and she doesn’t feel the urge before it happens. This is a new symptom.

Is that a PC symptom or meds side effect? She’s on slow release morphine, gabapentin, antibiotics (until the end of today) and antisickness plus paracetamol and her regular meds which have never caused that problem before.

Thanks for any advice. I will of course ask the doctor about this come Monday.

[Marmalade]

Hi Christine,

This is a question for the GP I'm afraid. As to the fact that your Mum needs help with her personal care, that is what the attendance allowance is for. I strongly suggest that you arrange to go with Mum to the GP or ask the GP to call when you are at home with your Mum so that the appropriate care can be arranged. Your dad can have the doors open and the baby monitor with him at night, you can make them very loud and he should be able to hear your Mum.

Best wishes

Marmalade

[Marmalade]

I think a pad on the bed and some incontinence pants would give your Mum a bit more confidence and it sounds like it would be helpful to have the items listed earlier in the thread to help keep your Mum clean and fresh unless she is able to shower or bathe herself.

Marmalade

[Christine49]

Thank you Marmalade,

We’ve put some of the items in place already based on the recommendations, mainly as we were worried about her not making it to the loo for a pee in time but this has surprised us all a bit and we’re just wondering why more than anything, especially as she has the urge to go #1 but not for #2.

Worrying to say the least. Is this common?

[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

[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.

Xx

[AndAde]

Hope all goes well with your mum today xx

[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.

Vx

[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??

Xx

[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.

xxx

[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 calories...my 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

Vx

[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

[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 can...it 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.

Vx

[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