update on mum

[rachelqt]

Aww Louie, I hope your ok? Such a hard time. Were all here for you and please do keep us updated as your always in our thoughts. Thinking of you xx

[Nardobd]

Oh Louie I'm so sorry that your Mum had such a bad night. Fentynl can cause severe side effects and "drugs.com" offers the following advice:

"Seek medical attention right away if any of these SEVERE side effects occur when using Fentanyl:

Severe allergic reactions (rash; hives; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); blurred vision; fainting; hallucinations; muscle rigidity; seizures; severe or persistent dizziness, headache, or light-headedness; slow or irregular heartbeat; slow or shallow breathing; trouble breathing; weakness."

Perhaps you ought to phone Mum's consultant and let him know?

I hope you're wrong about Mum hanging on to see your brother. You know where we are if you need us.

Love

Nicki

[louiepc]

Thanks Nicky and Rachel

I checked the info that was in the medicine box and saw that it said about hallucinations etc, we have told the nurses, but mum is still on the patches. In fact, I don't know if it was the patches, because she hasn't had anymore adverse reactions like she did.

I saw her today, and voice is stronger, not so much of a whisper now, still extremely confused, and its heart breaking listening to such an intelligent, articulate lady, stumble over whether she wants mash for tea. She calls herself stupid, which I deny vehemently to her, but she is obviously aware that she cannot communicate properly and it is so frustrating for her.

She had a catheter fitted today, so hopefully that is one less pressure for her to worry about. We are at the moment debating whether to take her to hospital on Monday. She is due to be drained, and I am honestly thinking that it would be to traumatic for her to get to hospital, have the procedure done, possibly stay over night, for what? She is going down hill at a rate of knots, I think the kindest thing for mum is to let her stay at home and be comfortable. She desparetely does not want to die in hospital, and I have an awful feeling that if she is still here, she may not come out of hospital and we have gone against her wishes.

Terrible decisions to make for the person you love so much.

I got the outfits for my children for her funeral today - surreal really, considering she is still here, but I saw them, know that they will have to have them in the not too distant future, so I got them, one less worry. Got a dress for myself, but I'm not sure, think I will re-think that.

Thank you everyone who is thinking of my beautiful Mum, please pray that when the time comes, its a peaceful end and no pain or suffering involved.

God bless you all.

Love Louie xxxx

[ali]

hi keep strong, you are doing the right thing to get organised even though it feels so awful.

i posted loads from end of june and got loads of support,have not posted much recently,but always keep looking at boards.

I know at end of june there were less than 600 members on here and now much much higher.

my mum died june 12th after feeling unwell from beginning april (prior to this very fit 78 yr old golfing ,driving etc.) Then this most awful diagnosis--was only in hospital for 10 days.

Brought her home (thankfully ) on the wed and she went to sleep forever --peacefully on the sunday evening-actually very quick as did not suffer jaundiced,ascites etc------diagnosed End Stage but weird minimal symptoms (or so i think--sore back definately )

Anyway crap time of year--getting a few xmas cards for her that some old friends did not hear--so upsetting

Actually ,some days cannot believe it has all happened xx take care---it is truely awful

[ma2houra]

Thinking of you and you're mum from across the world.

[dairylee]

Hi Louie,

I just wanted to add my support too. It is a truly surreal and confusing time, especially when you are having to keep some sense of normality for your children. We went through the same thing last Xmas - our previously healthy mum was taken into hospital in early Dec and died just 19 days later on the 27th Dec. It is just so, so sad and there is no comfort to be had at this terrible time. It just seems so unfair.

I'm sure you are doing a great job of keeping strong for your Dad, even if you are falling apart inside and he will appreciate that. Everyone is different, but I found my baby daughter helped me cope with everything, I'm sure your children will be a comfort to you. You'll get through it, because you have to get through it.

I am thinking of you and your family.

J. xxxx

[laura]

louie, have been away for few days, so sorry to hear things have sltered again so drastically, my thopught and love are with you and your dad and family love laura xx

[ali]

Hi

to everyone on these boards--either having lost someone or about to--to this horrible LATE presenting/advanced State PC hope you can all try and make the best of this time of year

take care

Helen xx

[louiepc]

I feel so scared and worried. Mum has been on massive amount of painkillers last night. A syringe driver is being fitted this morning as she can't swollow anymore. I know the driver is used to administer medicine, but I have had 3 people in my life who have had these fitted and have gone fairly soon after. Her breathing is extremely shallow, I fear we may have reached mums last day.

To make matters worse I can't be there until my hub gets back from work as my son has a sick bug. Of all the times!

Thank you for your thoughts and prayers, they mean so much, and I ask if you could pray that my beautiful mum passes peacefully.

L xxx.

[rachelqt]

Louie, im lost for words. Im lighting a candle for your mum and will say a prayer she does go peacefully. Thinking of you

(((Hugs))) Rachel x

[Nardobd]

Oh Louie

I'm so sorry to read your post. Of course my prayers go out for your Mum - and for you too.

Nicki

[laura]

dear louie, my thoughts and love are with you and your dear mum, not forgetting the rest of the family lauraxx

[HelenF]

Dear Louie,

I am so sorry to read this. I will be praying for your Mum and your family.

Love Helen x

[Mistipop]

I'll be praying for you all. It's so damn scary, i fear my family and I are only weeks behind you Louie.

Stay strong

X

[lynbo]

Louie

Sending love to you & your mum

Xxxxxxxxx

[CFF]

Thinking of you Louie. xx

[louiepc]

My mum is the strongest person I know. She is still hanging in there, infact, she amazed us yesterday as she stood up for the first time in 4 days, she ate a little and chatted. Unfortunaletly I didn't see her yest, going over to her now, but she out of it again, doped up on morphine and various other drugs. It's just a waiting game of when she's ready to go.

I hope that everyone can manage to have a special time with those they love, over the next few days. Those who have lost loved ones I'm truly sorry. I will let you know when my beautiful mum has gone. x

[ali]

Hi hope you get xmas and your mum is good-amazing what happens!

We are having a very differant xmas from all that i ever remember-ever ever---but hey ho will make the special effort (deep down could take to my bed and cry ) our 25 yr old daughter home from Brussels for 10 days and she so so misses her gran!!

So nothing else for it but to chill,have some vino and talk about mum/gran as we always do.

Went to place wreath at grave yesterday --so sad (but glad we got mum's ashes beside dad in October)--so they are together now.

Thinking of everyone on these boards

Take care

Happy and Healthy 2012

Love Helen xx

(sorry for rabbiting on and on!!! )

[louiepc]

Well it's been a real rollercoaster this last week.

We had our Christmas with Mum, in fact the first thing she whispered to me was "I've done it, I've won this battle". She meant that she had made it to Christmas as the doctors had written her off. I cooked Christmas dinner, and she ate - a small amount - but she ate. She even managed a small glass of wine.

Unfortunately Boxing day was different, my brothers came down for her and she was out of it all day. In a way I feel an enormous amount of guilt that I had a wonderful Christmas with Mum but the boys didn't. I know it could have been so different, but you can't help how you feel. I let the boys have their time with Mum on that day, although Dad had rung during the day and said she doesn't look too good, so I was on standby.

I got a call at 12.30am, Mum was calling for me. I managed to get dressed in a matter of minutes and drove over there. I remember Simply Red - holding back the years, and Knights in White Satin playing on the radio - the words seemed very apt.

I sat up all night holding mum's hand. She was in an enormous amount of pain, her face contorting to be unrecognisable. I was trying to help her breathe through the pain - the only pain I've ever known is labour, I doubt it even came close to the pain that she was feeling. She had two call outs from Rapid Response who gave her injections to control her pain, the first injection did nothing. She was then allowed to have two codeine, this did nothing, then 2.5 of oramorph, again nothing, her patch was changed, again nothing, eventually after waiting an hour for the RR to come out for the second time, she was given an injection of morphene and madazolam (spelling?), this calmed her down and eventually at 5.30am she fell asleep.

I managed to get my head down for a few hours, but the look on my mum's face will never leave me, you feel so helpless, the person you love in so much pain and there is nothing that you can do apart from hold their hand.

When the district nurse turned up in the morning they decided to up her driver from 5 to 20mg - she has been unconcious ever since.

I spent all day with her yesterday, I read to her for most of the afternoon, I wiped her lips with the sponge, I listened to her breathing. She seemed to be in the most deepest of sleeps.

I have just rung Dad, Mum is still with us, but her breathing is very faint now, yesterday we could stand in the doorway of her room and her breathe, now you can't hear it if you are more than 6inches away. We have been told that she wont regain conciousness now, and that she is in the final stages.

All I have done these last few days is pray that god takes her, and she goes peacefully, I suppose at least she is unconcious, and hopefully she will slip away without a struggle.

My mum is so strong willed, she got her wish and made Christmas, she has a will of iron, and if I can be half as strong as she is, then I think that would be good. She's an inspiration to me, I love her so much, and can't believe that after all this pain and fight the battle will soon be over.

My thoughts to everyone (especially Diane who went through this last week), this is a terrible time of year to lose someone, a time where people are enjoying themselves and expect you to be happy too, I don't know what next year will be like, I have to try and make Christmas good for the kids, and also because mum loves it so much, if I didn't celebrate it, I feel that it would go against her memory. As for New Year, I couldn't give a stuff. I've told my husband that I don't want to stay up, I'd rather go to bed early and forget about it. I also feel that I have to take down the decs today, before she goes. So that when she has gone, it's not Christmassy, I feel that i may be able to cope more with this time of year if I disassociate Christmas with the day she dies. Weird? maybe, I don't know anymore what's right and what's wrong.

Take care everyone, much love to you all.

louie xxx

[AnneD]

I'm so sorry to hear about your mum, Louie.

You managed to have Christmas dinner with her and that is something good to remember.

She is peaceful now and that must be a comfort to you.

It sounds as though you are strong, just like your mum.

Thinking of you and your family,

Anne.

[PCUK Nurse Jeni]

Hi Louie,

So sorry to hear what you are all going through as a family. It is a difficult time of year for sure.

Sending our regards on behalf of the Charity.

Jeni, PCUK.

[laura]

hi louie, so sorry to read that the inevitable is so close, i cant imagine how you are feeling, if i can wish some strength and love your way i will send it now.

you have done all you could, try and remember that?

thinking of you and dad, love laura xxxx

[rachelqt]

Hi Louie, My heart goes out to you and your family. I cant help smiling that your lovely mum made it to Christmas day and managed to join you for dinner. She certainly won that battle! I hope she has found peace now and the pain has gone. You have to remember that she will always be with you.

Thinking of you..Rachel xxx

[HelenF]

Hi Louie

I am so pleased for you that your Mum made it to Christmas day. I was telling my Mum yesterday about you and Diane, we had a very subdued Christmas as my Dad only left us 6 weeks ago. I really understand about the decorations too, we didnt put any up this year. Will wait to see how we feel next year.

I am thinking about you and praying for your Mum

Much love

Helen

[Nardobd]

Hi Louie

My thoughts and prayers go out to you and your whole family.

Nicki