Help please re mums treatment

[Vanhalen]

Hello, I hope someone can help with regard to my mum. I posted earlier re the time scale of having chemo after being diagnosed. Thank you again for your help.

Mum was discharged from hospital on 1st April.

She had her first treatment on 12 May.

I don't know whether that's correct?

My mum had her second course of gemcitabine today. She's not having the capecitabine yet. She's been given metoclopramide for anti sickness.

She's feeling very ill. But, not being sick, just, in her own words, feeling so really awful and wants to feel at least normal.

I don't know if there's anything more I can do to help, make her feel more comfortable.

She was discharged on 1st April and so far we've had no one to visit her. She lives alone. I don't know how these things work. She's asking if this treatment is worth it as she remembers how she felt after leaving hospital after having the stent fitted. She was weak but got stronger. She could get into her garden then, something she can't now. That's where I want to see her. Quality of life?

Any help would of course be really appreciated.

Thank you.

R

[john27]

Hi R

My Mum's has just been diagnosed and it sounds like we are a few weeks behind you as the biopsy/chemo is still in front of us, but I do know that the Macmillan nurse looking after Mum is really good. She liases between us and the District nurse, the GP and the Hospital. If you are worried about your Mum being by her self then here is a link to their website where you can get help. They are amazing and have already helped us alot. Copy and paste this link into your browser...

http://www.macmillan.org.uk/HowWeCanHelp/Nurses/AboutMacmillanNurses.aspx

Hope this helps

John

[Vanhalen]

Hi John

First of all let me wish your mother well.

Many many thanks for your help and earlier this afternoon I went with my mum to see her excellent GP after phoning him earlier in the day asking to see him.

I was ready to suggest Macmillan nurses and he beat me to it and suggested getting a hospice involved to assess mums health and care.

I feel relieved to know things may be moving and mum can get some help.

John, thank you again for pointing me in the right direction.

Your help is invaluable.

I wish you and your mum all the very best John.

Take care

Rich

[john27]

Hi Rich,

I'm really glad something is happening for your Mum, it does help alot to know that there are people and services that do care. When I first found out about my Mum, the shock and feeling helpless was awful. And even though this disease is bad I have read many positive stories that are keeping me going and have made me determined to do whatever I can for Mum. Have spent many hours looking into research being done around the world and have received replies from doctor's in the states. In all liklehood not going to be able to help people suffering now so much,(which pains me greatly) but the future I'm sure holds treatments that will be able to make a big impact to PC.

Wishing you both all the best

John

[Vanhalen]

Hi John

Thanks for your reply and I obviously hope things go well for your mum.

As I'm sure you feel it's the speed of all of this which really shocks. Id never really heard of PC before so it's been a quick learning curve.

But hearing from others like you is a real help.

Thanks again.

Take care

Rich

[Vanhalen]

Hi John

I really hope your mum is doing well.

John, could you help by getting back to me as I want to ask you about the help your mum is getting.

Thank you.

Best regards

Rich

[john27]

Hi Rich

How are things with you and your Mum? Really good I hope.

What was it you wanted to know? We have a biopsy date now of the 17th, things seem to move so slowly.

Cheers for now

John

[anita_m]

Hi Rich,

I hope your mum is feeling better.

My mum has just finished her first cycle of Gemcap and her first 'rest' week was surprisingly the one where she felt worst of all. Really tired, bad digestion, swollen ankles and all round very low.

We've found the medical support to be patchy. There does seem to be a gap when it comes to reassuring patients about symptoms and providing the emotional support. I understand that people have had good experiences with Macmillan Nurses but we, as yet, have not been able to get mum referred...

Hope that you can get some help and things improve.

Anita

[Vanhalen]

Hi Anita and John

I really hope both your mums are ok. I really just wanted to know what kind of care you guys were getting for your mums.

My mums GP has referred her to a hospice. But she doesnt want to bother anyone.

I'm learning ( I think)! that the Macmillan nurse help Is what my mum is getting from the hospice.

But I've had the best help from Jeni on this site!

My mum was discharged from hospital on the 1st April. She was eating but had horrible bowel movements minutes after eating. Jeni emailed me on the 26th May and asked if mum was having enzyme replacement therapy. She went on to explain what the symptoms might be, the bloated stomach, flatulence, oily and foul smelling stools that were hard to flush away( sorry to be so graphic but if this helps anyone else then good). My mums symptoms were exactly that and at 83, living on her own, this was very embarrassing and uncomfortable.! Not only that but the food she was eating was not getting into her system so she was eating but losing weight. I now know this to be steatorrea.

I got a prescription of Creon for mum on the 31st May. Since then she has had only minor bowel problems. She had at least 8 weeks unnecessary discomfort and weight loss. To say I'm angry would be an under statement!

Even more so when one of the people from the hospice visited mum and she explained her bowel problems, only to be told that was called steatorrea and that was just a symptom of PC.!

Mum is very tired but I'm trying to get her something to counteract that, steroids or whatever, again thanks to Jeni for her advice.

I really did not think it would be this tough to get help after being given countless bloody leaflets about how mum would be looked after and her quality of life would be paramount.

Take care

Rich

[john27]

Hi Rich

I'm so sorry to hear your Mum has suffered like this. I'm not sure of any advise to give you as my Mum hasn't yet had any real problems eating or the enzymes not working. Only thing we've had is constipation with taking Oramorph, but fruit (mostly apples) seem to help get her back to normal. As I said before we are behind you with all this and I'm sure there are many people on this forum that can advise you especially Jeni.

Sorry I can't be of more help as I know the frustration you are feeling but I certainly wish you and your Mum the very best

Regards

john

[Vanhalen]

Hi John

Good to hear from you.

Im glad your mum is doing ok and its interesting to hear that she hasnt had to have any enzyme replacement. I suppose i thought mist people would have to have it.

John, is your mum on chemo yet? Shes got biopsy soon?

Can i ask what kind of visiting from anyone she gets. My mums 83 and so far shes had a couple of visits from hospice nurse but thats all. Seemed to be more to do with filling out forms for disabled badge, taxi and allowance. Shes on her own and i thought thered be more than that.? I help with cooking dinner every night and put her into bed.

Best regards

Rich

[john27]

Hi Rich

I guess Mum doesn't need the enzyme help yet as her pancreas is still working abit. When she was diagnosed her tumour (from CT scan) was 4.8 cm long which I think is about half the size of the pancreas. She has had a few visits from our Macmillan nurse (once a week at the mo) who is really great and has sorted out stuff like prescriptions with the GP and transport for Mum when she does start chemo (as I can't always be around-work abroad). There is also the Upper GI nurse based at the hospital who I call quite alot for advice and has been with us since diagnosis. We do have a District Nurse but haven't called her yet, do you have a Mac nurse? She will be able to advise you about care for your Mum as these nurses don't do things like cooking and help getting into bed, but it might well be worth getting contact details for Marie Curie who offer overnight and weekend help, don't know exactly what they can offer but have been given their details by our Mac nurse....so they must be good ....just haven't had to use it yet....

I hope this helps

John

[Vanhalen]

Hi John

Mums got a nurse from the hospice who's been out to see her a couple of times.

She had a visit from an associated specialist from the hospice today. I'm glad she saw mum. She gave advice on her diet.

I get the feeling that as she's not "too" bad, that's the way it is.

All the best to you and your mum

Rich

[Vanhalen]

Dear everyone

My precious mum had her wishes granted earlier today, at 2pm and found peace.

She passed away after suffering for too long.

She was and is the most perfect mother ever.

She put up with so much and went through with everything that was asked of her.

She was so strong, even though she would question this.

Of course there's so much more.

I must add that the hospice nurses and doctors were superb. They did everything they could to make mum comfortable.

My thoughts are with everyone on this site going through the same problems.

Love

Rich

[AnneD]

Dear Rich,

So sorry to hear the sad news about your mum

but glad that she is at peace now. It's good to hear

how wonderful the doctors and nurses from the hospice were.

Sincere condolences,

Anne.

[louiepc]

Dear Rich

I am very sorry to hear your sad news. My deepest condolences to you and your family at this terrible time.

Louie xxx

[Hopefulwife]

Hi Rich,

I've just read all your posts, upto and including the latest one with your sad news. Please accept my deepest sympathies and take the only bit of comfort that you can at this time, in the fact that your lovely Mum is no longer in pain.

Diane xx

[john27]

Hello Rich..

I'm very sorry to hear of your Mums passing,I have a fair idea of how you must be feeling now but take comfort that someone so special to you isn't suffering anymore. It's taken me quite awhile to even be able to come back to this site, but as time goes on, the pain/feelings of loss and sadness gradually get easier to bear. Death is a difficult thing to deal with but we all face it sometime, what I mean to say is 'your not alone'

Keep ya chin up mate.

Best regards

John

[laura]

hello rich, am so sorry for you, thinking of you and yours,words don't seem very adequate at times like this, take care of you now. love laura xx

[Vanhalen]

I haven't been able to come back to these forums recently, as they remind me of the times when mum was alive and I was trying to find answers to helping her feel more comfortable. I had the best help from Jeni.

This may not be the place to say this, but my mums funeral was the most memorable occasion. Having the theme of Brief Encounter played at the service (Rachmaninov) was just heartbreaking. She loved that film.

Thank you for everyone's kind words and I just wish everyone a kind future.

Rich X

[laura]

hi rich,

thanks for thinking of us, at what must be a heartrending time for you,we're all around if you need to "chat" at any time

love laura x

[Vanhalen]

Hi Laura

Thank you for being there, as well as others. It's a real help.

Take care

Rich x