update on mum

[louiepc]

Hi everyone

I know I have not been on here a lot recently, been a bit of a pants time truth be told.

Mum was in hospital again last week - unfortunately her permanent drain that she had fitted got blocked, so they have now taken it out, and we are back to square one, with having to take her to the hospital as and when she needs to be drained - which is fine whilst she can get to hospital, as they have already told me, once she is unable to get to hospital, she will not be drained anymore. Great, nice prospect to look forward to!

The hospital cocked up big time too - it was yet another different hosp. For some reason they hadn't transferred over her drug charts. she was nil by mouth for the day of the op - so had codiene at 8.30 am and was "refused" any other medication, she went for her op at 4.30 (whilst in pain), then in the middle of the night, when in a great deal of pain, was "refused" morphiene. Apparently they didn;t have a note of it and couldn't dispense it to her without a docs approval. Finally got it for her, after about an 1-2 hrs wait. The thought of my poor mum being in pain, makes me so damm angry, but the thought of the incompetitence is unforgivable. You would think, a termainlly ill patient, possibility that they may need pain relief would rate high??? apparently not.

She was wiped out most of last week, then had the Eleanor Hospice ppl round to say that when my Dad does have his heart op in Jan, she will not be allowed to go in the hospice, unless she has 2 weeks or left to live - they actually said that! We now have to find a respite home - hoping and praying that mum is still with us when Dad has his op, and get that sorted. Nothing is ever simple.

Saw mum today - she very lathargic, and down. Not eating a great deal, when she does eat, she feels extremely sick and in a lot of pain. She is also saying that she has a terrible pain in her back by her spine. Wondering whether it has spread further??? I am feeling so damm angry most of the time, my emotions are unrecognisable. I used to be so happy go lucky - I don't feel that I smile much anymore.

We have Christmas just around the corner - and I am sorting everything out so the children will have a great time, but i'm dreading it, I don't even know if mum will be here for it.

Major moan and whinge tonight - sorry.

xxx

[Nardobd]

Hi Louie

Sorry to hear that your Mum has been having such a hard time...still she has you to look out for her which is more than some people have. It is terribly hard seeing a loved one in pain and it does make us all very angry when hospitals seem not to have anticipated things which we would all think were obvious. Still, we learn for next time and I'm sure that in the future you'll make sure that Mum's pain medication is written up before you leave!

Sometimes it seems as though everyone is putting blocks in our way, such as the hospice you mention. It is incredibly insensitive of them and I'm sure that you really don't need to have to sort out respite care on top of everything else. Usually, though, these things work out for the best - perhaps your Mum will get better care in the facility she eventually ends up with?

PC brings with it a huge rollercoaster of emotion and it's not surprising that you're not seeing the happy-go-lucky personality you used to be, particularly since you're also worried about your Dad too. Don't forget to spend some time looking after you! You're no good to anyone if you make yourself ill.

Pancreatic cancer can cause back pain and it doesn't necessarily mean that the cancer has spread or is getting worse...it could just be that the tumour is pressing on a nerve. It could also be completely unrelated. No one should have to be in pain this day and age so make sure the doctor knows about it next time that Mum sees him.

If Mum isn't eating very much what about giving her some food supplements like Complan...more like a milkshake than food and it will give her some of the nutrients she needs. Jeni Jones will be able to give you more info on this if you email her at support@pancreaticcancer.org.uk

Don't be sorry about having a whinge...we all need to from time to time and that's what we're here for, to listen and try to help.

Kind regards

Nicki

[HelenF]

Hi Louie

Sorry your Mum is having such a horrible time. I found that Complan wass really good for my Dad it is super soluble so no lumps and doesnt taste. He hated the Ensure an Fortisip but they do have all the nutrients in if she can drink. Our Macmillan nutrionist ordered a sample box with lots of different flavours so we could see which ones where more tolerable - all free of charge.

One other thing, it could be nerve pain so you may want to ask your palliative care Doctor about Pregabalin. My Dad was on this and Oxycontin and whilst he lost his battle nearly 2 weeks ago now, he never was in any pain- a small blessing for us.

Thinking of you, I know how hard it is

Helen

[rachelqt]

Hi Louie

Your poor mum, im sure you just feel like screaming, "give her a break"!!

That is absolutly awful about the draining, I suppose she is too weak for another one to be placed? Being left in pain, in this day and age is terrible and I can totally understand why you would get angery. It makes me cross that alot of medical staff know little or seem confused about this cancer!!!

My dad has nearly finished his first cycle. Started of well but eventually he started to have real tired and nausea days, and had a little vomiting on the night of his chemo day. Somedays he looks like a wee grey shrunk man and others he looks great. He has a week of next week thankgod!! He also got a pain across his lower back on wednesday night and we went into panic mode. The oncologist and like Nicki said it can be completely unrelated.

Christmas also feels different to me this year as dad is terminally ill, but for the sake of the kids you seem to have to make it normal for them. We are spending christmas with my mum and dad this year. We have all decided to make the most of it, while dad is reasonably well as we may not get this chance next year.

Look after yourself hun, I know this experience is bloody awful but you will get through it. Your often in my thoughts.. Rachel xxx

[laura]

hi louie and rachel,

so sorry for you both, must be so hard to plan for xmas and give the children a happy time, the good thing is it will pass and soon be over! i dont enjoy xmas now there are no small children around, bri and i will be with our friends we met at chemo 18 months ago. and wiil have a quiet day together, doing not very much!!

rachel, bri was and still is tired, thats the chemo, the best way to deal with it i found was to let him rest or sleep. when he wanted, he went to bed today for 3 n half hours! had no chemo now 3 weeks, do find energy drinks help, we live a differant normal, do hope things improve for dad and all of you xx

louie, what an awful time you are experiencing, its hard for me to imagine what its like, we have had such a differant time at truro hospital, how on earth can it vary so much? i know gps and nurses, unless specialized are not very clued up on pc in general, how to take creon etc etc, once bri was diagnosed our gps were brilliant, i do think they realized they had missed some signs that bri had been mentioning, a lot was put down to his stress !! and they continue to be supportive. i know you have a lot to deal with but you could go and see pals at the hospital with your concerns,they will act on your behalf.

about mums pain control and difficulty with the hospice wont your macmillan nurse sort that for you?.

truly my heart goes out to you both, i know that doesn't actually help,. wish there was something i could do.

take one day at a time and try not to prempt the next day, and soon that day will be yesterday. my love and thoughts to you both. laura xxx

[louiepc]

Hi everyone,

Thank you so much for all your replies, and help and thoughts.

I went with Mum to a hospital app today, and so pleased that I did. We were beginning to feel that she was "being left", the Dr asked how the pallative team was, and we said to be honest, not very good. No contact from District nurse for 2 weeks, been told that she cannot go into the hospice when Dad has his op, which will be 5 Jan. We are being left to decide whether she is swollen enough to get drained - which in my mind is potentially dangerous, as we could not realise that she is too far gone, and then she's admitted as an emergency.

I also mentioned the medication that, Helen F, mentioned to me - Thank you Helen. Mum is going to be put onto these.

Mum got admitted to be drained after her appointment, and is staying over night having this done now - she may have to have another blood transfusion.

I spoke to the Elenor ppl, and feel that I have finally got somewhere, Mum is going to go to Day Care at the local hospice, it will be once a week, where she will be monitored by docs and nurses, she can have alternative therapy, such as massage and reflexology and I think it will do her good.

Sadly I know that mum is deteriorating quite rapidly now - this past weekend has been full of tears, I honestly don't think she will be here for christmas, I saw her on Friday where she is basically sleeping most of the time, and to be honest I feel that she is giving up now. Today, she looks deathly thin and very pale, it is such a sad situation to see your lovely mum in such a way. And too be completely honest, today, for the first time ever, I actually thought she would be better off going sooner rather than later. How terrible is that??? It's not that i want mum to go, I love her so much. She is a shadow of herself, she can barely be heard when she speaks she is so weak, she doesn't want to eat, or wash or do anything except sleep.

I know the next few weeks/months are going to be the hardest i and my family have ever had to deal with. I don't know how we are going to deal and cope with this, but we have to, I have to be so strong for my kids, and my dad. He is broken, such a strong willed, stubborn man, completely broken. Terrible terrible times.

Louie xxx

[john27]

Dear Louie

My heart goes out to you, unfortunately I know only too well what you're going through right now as do many others here. I think it's safe to say we are all with you in spirit during this time. Sorry not to have posted before to you as have been following your posts but only just able to now y'know.

It isn't easy to be strong when things are so dark, just be with her as much as possible and keep letting her know you love her, as you so obviously do.

It's no consolation, but you're not alone...

Love and best wishes

John

[lynbo]

I agree with John, your not alone, your doing a great job, we're all behind you.

Love and prayers to you.

Keep strong xxxx

[HelenF]

Dear Louie,

I am so pleased you made some progress with the Pregabalin. It is absolutely shocking that we get more information from these discussion groups than actual Dr's it really is self service.

I hope your Mum is comfortable no-one should be in pain or any discomfort.

I can only agree with everyone else, you are in my thoughts, I know what you are going through, it is an absolutely awful time for your Mum and all her family. It wont get easier but you will manage and cope, its amazing where you will get your strength from.

Its been 2 weeks since I lost my Dad, I am heartbroken but I get strength from coming on here and like I said when I am feeling abit better I will be getting more involved to put PC on the map.

Sending you a big e-hug

Helen

[Nardobd]

Hi Louie

Just adding my voice to the supporters and sending thoughts of strength and comfort your way.

Nicki

[laura]

hi louie,, like everyone else so sorry to hear that you feel things are deteriorating, what can i say, nothing really other than my thoughts are with you and your dad of course, terrible for all of you, i sincerely hope you get all the help and support you need, deserve, ask for, my love laura xx

[ali]

Hi

Try and enjoy your next few weeks/months with your mum--this disease is " awful " for everyone

thinking of you and everyone else on these Boards

Helen xx

[HelenF]

Hi Louie

I was dricing to my parents house last night and I started thinking about you and your Mum alot yesterday, I hope you are both ok under the circumstances.

Best Wishes Helen

[louiepc]

Hi everyone

Thank you all for your lovely messages of support.

I took mum to the hospital hairdressers today, I don't think she wanted to go in the end, she is losing the ability to walk now, but we did it, and she enjoyed her pampering. She was absolutely exhausted when I got her home. She is very weak now, her legs have swelled so much, they feel like they have lead weights in them.

We had the most surreal and wierdest conversation today, I apologise in advance if I upset anyone, but I feel that I want to share it with you.

Mum was talking about the Oramorph, and that she doesn't like it because it makes her halucinate. She was saying "there are people standing all around me now, and when I went out someone was standing by the fence and then I turned again and they weren't there". Mum, I said, you haven't had your Oramorph for about 2 weeks now. It made me remember when my Nan died, she was talking about people and scenery that she could see and that I couldn't. I said to Mum that this is probably normal, maybe because she's at this particular stage in her life, her mind opens up to things that we can't see. And even though the reality of mum dying is awful, in a way, I now know that it is something she has to do and that it is a calm experience for her, and nothing to be frightened of. I said to her that I don't want her to hang on and suffer just because she feels that we want her here. What we want doesn't come into it, if she is ready to go, then she has to do what she needs to.

I told her that I have been looking at an outfit for her "day", I am going out tomorrow to see if I like it, I don't want to wait too close to Christmas and find that I can't get what I want. I have to do my mum proud, and feel good in what I wear for her.

Dad and I looked at nursing homes last week for when Dad has his operation, one of them I wouldn't want mum to go to, the other was nice, but to be honest I don't think she will be here. It's really strange, I can sit and talk to mum quite openly about what is happening, but back here at home with my husband I have cried so much.

Anyway, I really wanted to thank you all so much for your kind words, thoughts and prayers, it honestly means so much, and I really hope that you are all ok. Whether with your loved ones still here or with their cherished memories.

I will update you on mum's progress.

Much love xxxx

[lynbo]

Hi Louie

I remember Andy hallucinating a lot, he spoke of people being in the room - it wasn't frightening, at first I was a little shocked, but in the end I just went with it, I think you are doing an amazing job, no one knows what it's like for us all, that's why it's good to have the support on here.

Much love to you too xxx

[HelenF]

Hi Louie

I am glad you are both hanging in there, it sounds like you are having some quality time with your Mum. My Dad never mentioned seeing people, but I actually think it is lovely whether she knows them or not. I would like to think these are angels that will look after you Mum when the time is right.

Take Care

Helen

[rachelqt]

Hi Louie,

You have such a wonderful relationship with your mum, and you seem to cherish every moment with her. Im sure you will have no regrets when its your mums time. I like what Helen has to say about these people she is seeing as her angels

Hugs...Rachel xx

[CFF]

My dad also had hallucinations in the weeks before he died but didn't find them distressing - I thought it was linked to the Oramorph or the Ketamine. It is the most surreal, awful, hardest thing in the world to talk to your loved one about them 'going' but I believed with my dad, and still believe, that doing this makes it 'ok' - well as 'ok' as it's going to be' for them to accept and 'go'. And it's no wonder that you go home and sob. I did the same thing too and it's what gets you through it.

You are doing brilliantly and your mum and dad must be so proud of you. Thinking of you lots.

xx

[louiepc]

Terrible day today, a nurse spent a few hours with me and dad. Mum has days/week now, my poor dad was like a little boy, I'm holding his hand whilst we are trying to take this horrendous news on board. We were asked about resuscitation and that completely floored my dad, he couldn't make the decision and asked me to. I'm doing things I never dreamt I would have to do.

I have cried so much tonight.

Louie xxx

[lynbo]

Oh Louie

How can anyone take in this kind of news? It's just awful, and I can't imagine how you were feeling at the time, but it sounds like you held it together for your dad, then have had your moment in private.

No words I say will make things better, but I'm thinking of you all, and... Hope you can keep strong to cherish each day and take each day as it comes

Xxxxxx

[Nardobd]

Louie I'm stuck for words but I wanted you to know that I'm sending thoughts and much love to you all.

Nicki

[rachelqt]

Louie, my thoughts and prayers are with you and your Dad. I suppose the only thing now is to make your lovely mum comfortable and tell her you love her. You are a blessing to your mum, as she is to you. That decision im sure is heart wrenching. I just wish there was something I could do for you.

Love Rachel xx

[laura]

oh louie,, so sorry to read of your devastating news, what can i say? my love to you and your dad, you have such a difficult task, you will find the strength but you must feel torn in so many directions, try and take care of yourself dear. love laura xx

[HelenF]

Your Mum and Dad must be so proud to have a daughter like you. It is a dreadful time, I know and you and your family are often in my thoughts.

Bless you ,

Helen x

[louiepc]

Hi

Mum was put on some Fentynl patches yesterday, and we are not sure whether it was these that did this or whether it was something else.

In the earlier hours of this morning, Mum was crying and having nightmares/hallucinations, according to Dad she was petrified, saying "they are going to get her". He honestly thought she was dying before his eyes.

Then this is the strange bit, she seemed to have a second wind, my brother visited, she hasn't seen him for 2 weeks, and yes she is extremely weak, and struggling with speaking and getting very confused now, but she managed to eat a little and drank 2 glasses of milk.

I am afraid that she hung on to see my brother and now that she has, she will go quite rapidly. It's awful everytime the phone goes, my heart is in my mouth.

Look after yourself everyone, take care and I will be in touch soon.

Louie xxx