Waiting results to be confirmed ....

Hello Welshpuffin

I am sorry to hear of your Mum’s illness. Waiting for information from medics is hard as it is difficult not knowing what’s going on. The palliative nurse will be able to give advice. Also have a look at the Pancreatic Cancer UK site and maybe phone the nurses there. They are experts and very helpful.

Let us know how you get on.

Squeaky

Received the call today, biopsies are not conclusive but based on scans etc they have clinically diagnosed PC stage 1, invited to clinic in 2 weeks to discuss options, don’t think treatment is an option because she is so frail & weak (consultant on holidays). 

This is good news but feel as though exhausted by the whole thing, mum is so weak, bowels still a real problem, can’t take Creon so looking at prescribing imodium, she is eating very little and painfully thin. It is normal to have mixed feelings? Is it an impossible question to ask how long will it stay at stage 1 or will it progress and get worse? 

Lots of emotions going on at the mo ....

Hi Welshpuffin

it is incredibly difficult to care for someone who is so unwell. What I have learned about PC from these forums is that people’s experiences of PC can vary greatly. You say that your mother is very frail and you doubt treatment will be offered . Certainly for treatment  people generally need to have some strength.

Have you tried opening the Creon tablet and mixing it with applesauce or something like that. That is suggested when people have difficulty with it.

Your Primary carer is the GP so whilst you wait to see the consultant you could always ask advice from your surgery.

Squeaky

Hi 

It seems as though we’ve got something new everyday to deal with; mum has a chest infection so now on antibiotics and severe pain on her left side under her ribs. Palliative nurse visited today and we discussed Creon and pain relief - mum agreed to restart Creon, as suggested I mixed it with jam but she refused to take it. 

I found today really hard, it seems I’m battling with mum, I just want to stay as healthy as possible for as long as possible, 

Appt with consultant next week to discuss next steps, not sure if we’re looking at treatment due to her frailty.  It’s just so hard.

Hi

You are right . It’s incredibly hard.

From my experience with my husband I think it’s best to let your Mum do as she wants. Taking Creon would probably help her digestion but, after discussion with her she doesn’t want to take it then it would be best to leave it for her decision.

The palliative nurse seems very helpful. As I mentioned before it’s worth giving Pancreatic Cancer UK a call.

Keep us posted.

Squeaky

Saw consultant on Friday, he confirmed that there’s no treatment available for mum; sad news.  So it’s a case of managing her symptoms until the day comes when she’s no longer with us, 

Hospital bed & ‘just in case’ bag came last week she’s prescribed more antibiotics for chest, steroids to encourage eating, tablets to help sickness, medicine for oral thrush plus pain killers. 

Mum is so frail, she’s eating and drinking very little, I think she’ll take to her bed soon.  Know I sound defeated but it’s so sad watching your mum slip away day by day. 

Hi Welshpuffin

I've only just come across your thread and what you and poor Mum are experiencing are somewhat similar to Anne my wife and myself. Anne hasn't yet reached your Mums stage but she is losing weight rapidly even though she is struggling to take her Creon. I know we are reaching the stage of the offer of a hospital bed but quite frankly, according to my two neighbours who lost their wives, these beds are huge and so persuaded both palliative nurses that their wives own beds would do.which is what their wives wanted.  It seemed to work.Could you please enlarge on this matter, in your experience. I feel for you my friend and can relate in so many ways that I could waffle on about it all day but this is your thread. Just thought I'd let you know you are not alone in this evil dilemma.

Geoff

Hi Welshpuffin

I’m so sorry for your situation, I understand how you are feeling I lost my mum a year ago to this vile disease. 

I just wanted to give my opinion on the hospital bed. My mums last 5 days were in bed. It was really important to her that she was in her own bed so when her Macmillan nurse offered a hospital bed I turned it down. It was a mistake and the only thing I regret. After a couple of days even though we were turning her regularly she broke out in horrible bed sores. When this happened it was decided that it was too late to change anything and as she was on a syringe driver they upped the dose. She did keep getting breakthrough pain and I’m sure some of that were the sores. 

On the plus side of having her own bed I was in it with her when she died and my dad and sisters were sitting on it. 

Mid im ever in that situation again I would definitely go for the hospital one. X

Hi Splodge

I just read your letter to Welshpuffin and found it very informative.  Our problem, and that of our neighbours just before the time of their losses,  was/is our houses only have one living room unlike  conventional  older houses so there is limited space,  but a hospital bed would just about squeeze in judging by my friends description.  Anne sleeps in her single bed these days but I can see the time when she wont be able to climb the stairs to bed thus a bed in the down stairs living room will be required. Your experience is to recommend a hospital bed it seems. May I ask a question?  How does the hospital bed score points over a person's own bed.

Thanks in advance Splodge.

Geoff x

Hi both 

thank you for your messages, they really help and it’s sad that I’m not the only one in this awful situation. 

Mum moved in with me 7 weeks ago when this journey started, we are fortunate that we have a room downstairs which we changed into mums room, she was sleeping in a single bed. The district nurse recommended and ordered the bed, I think in a hope that when mum decided that it was time she took to her bed then it would help with pressure sores; so far no pressure sores.  The bed arrived 3 days later, mum sleeps well it and personally I find it a godsend as you can higher and lower the bed and it has sides so she not at risk of falling.  Yes it’s bigger than a standard bed but it is does help. 

Mum is having a particularly bad day, she had her first temperature, sickness, pain and she appears uncomfortable as she’s rocking backwards and forwards and she doesn’t want to eat.  The palliative nurse told me that I’ll start to notice daily changes in her - think we’re at that stage.  It’s just so wrong. 

We have to keep strong and that help & kindness from all round us.