My Amazing Mam, Advanced, Devastated. (Swallowing Help Pls)

[Ella50]

Hi, Pls can anyone help?.. my mam has been on steroids now for one week which, at last, has given her an appetite.. but since she finally feels like food she is having trouble swallowing (cant win)..

She is only managing juices.. the dietician hasnt been much help.. got a prescription for a type of ensure drink you can freeze..

Think she needs more to build her up than that?? especially if asking for food??!!

Heard about a feeding tube or what is this creon? no-one seems to be suggesting anything..

Please can anyone advise on this, things seem to be happening so fast..

Havnt been able to check any posts here this week, so busy with mam..

sending love to all..

Thankyou xx

[suef]

Dear Ella,

It is great that your mother has got her appetite back but I am sorry the dietician is no help. You can get drinks called Fortisip and Fortijuice that are high protein and have all kinds of vitamins etc, but I think you need a prescription. Creon is used for people whose pancreas cannot produce the enzymes needed to digest food, I am not sure if you would use it with Fortisip.

It is dreadful that you cannot get such basic information! Push hard!

good luck,

SueF

[Ella50]

Hi Sue.. thanks for your reply and so I am 'on a mission' now

Your explaining creon, and it has never been discussed with us, will be finding out..My mam had to send in a diet diary to the dietician of everything she ate and drank for a week, that was a month ago and nothing heard since..Until my dad rang up today and still not much info, So not the best..

Just wish there was a corner we turned where we didnt seem to hit a brick wall.. Grrr.. xxxxx

[PCUK Nurse Jeni]

Hi Ella,

Regarding the few things you have mentioned here:

Swallowing: not sure what is causing this? Is she being sick? Is she feeling nauseated? Has she got any problems within her mouth? White coating, for instance? This might indicate that she has an infection or thrush, which will cause pain in her mouth, and possibly affect her swallowing. Does she have a sore throat, for instance? There may be other reasons for her swallowing being affected, but it is difficult to diagnose this remotely. Have you contacted her GP? If she is vomiting, then there is a case for taking her to A+E, in case she gets dehydrated.

Ensure drinks: these are complete meals, and are packed full of nutrition and calories, minerals etc...which a person needs to survive. If a person is not eating, they can survive on these drinks, at least 3 per day, more if tolerated.

Creon: Has she been told that she needs creon? A good percentage of people with PC have enzyme insufficiency and will need creon to aid digestion. It is available on prescription from the GP or via the hospital, or via the dietician, whichever one sees your mother first. You should ask if she needs it. You can tell if she does if she has pale stools which are oily and difficult to flush, bloating, cramps or wind. This is a guide.

You can email us any time at support@pancreaticcancer.org.uk

Kind regards,

Jeni.

[Ella50]

Hi Jeni.. Thanku for getting back to me.. not long after i spoke to you my mam went into hospital..

she is getting some fluids into her now and has a mouth wash, both seem to be helping.

Im happier today as she seems to be getting back to being her 'old self' a little, able to eat a little and have a nice chat- as last couple days some things she said didnt make sense to us. (?)

On a ward since fri night- had bloods taken and chest xray, not sure of results as we havnt been able to talk to a doctor due to it being the weekend !!

Was due to see oncologist tomorrow, our 2nd appt. to see if steroids working.. unable to attend.. tho nurse did say she will sort something so that he comes to see her (?)

Hoping for some hospice care, as she shldnt be on the ward she is on..

hope to know more tomorrow..xx

[PCUK Nurse Jeni]

Hi Ella,

I am really glad to hear your mum has been admitted. It looks like she may already have been a bit dehydrated. If she was saying things which were not making sense, it might have been an indicator of salts/mineral imbalance due to dehydration. Hopefully, the drip will improve this, and the mouthwash will help her swallowing.

Do keep us updated on how she is.

Kind regards,

Jeni.