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Mum2three
Posts: 8
Joined: Thu Jul 03, 2014 7:56 pm

How long and how much will mum suffer

Postby Mum2three » Mon Jul 28, 2014 8:33 am

My mother was diagnosed only a few short weeks ago after months suffering pain, being unable to eat and ending up bed bound. Her diagnosis was missed by a few doctors although I had suspected that cancer would end up Being involved.

It was a shock though, when the diagnosis finally came, when we were told nothing could be done and survival for six months would be very optimistic. Chemo was discussed but my mother was so ill and weak and treatment would make her worse for very little gain. That and the thought of losing her crowning glory made it seem not worth while to her.

My mother came home from hospital with strength of mind and determination, she never cried when she was told. She was going to get strong and mobile and with the help of the cocktail of drugs to help her digest food was going to start eating again. Her grandson is marrying in November and that was her goal, to see him get married.

The weeks that followed were up and down. The many tablets weren't explained to us on leaving hospital and my mother (always been a tablet dodger) was scared of taking them. I kept going to the house and finding the strip of tablets sorted for the day still full. After much googling I was able to talk her through what they did and how they would help stop the Diarrhoea and sickness and help her body digest food. Still I would go one day and shed taken them then another something would happen and she'd stop again. The last two weeks at home all she had was a small cup of stew juice (just the juice, she wouldn't drink a blended stew) but she still thought this was enough to get her better. But the Diarrhoea got worse again. Then for some reason when my mother phoned to order her repeat prescription from the surgery she was told she didn't need to take the tablets from the hospital anymore (we think this must have been a misunderstanding) and she immediately stopped taking them all. By the end of that day she was feeling very ill. We tried out of hours but after three hours waiting for a dr my husband phoned for an ambulance. My mother didn't want to go to hospital but she was in so much pain.

Her blood pressure was very low and she'd started vomiting dark brown. She's been in three days now, she vomited a lot and blood pressure is slowly getting lower and lower, along with her pulse. Doctor has confirmed that she has been vomiting blood from the tumour and that it's putting pressure on her heart. She's had bag after bag of fluid, glucose at first but just sodium now. She's also on oxygen. Morphine seems to need increasing regularly but they seem to be keeping pain mostly under control. She is very sleepy now and her eyes closing as she's speaking. She'll nod off and suddenly wake and jump into the middle of the conversation. The whole time since diagnosis we've all kept a sense of fun and laughter and positivity going, the running joke is that my mother hasn't stopped talk since she was diagnosed. And she's had us all bending over backwards buying her all shes wanted. We couldn't do much else because we couldn't get her out, although she had managed a short trip outside in the wheel chair before she took a turn. I was hoping to do much more. These last three days have been so weird, seeing her so quite, trying to make some kind of conversation when we're so used to her talking our ears off. We've managed to raise the odd smile from her, more so now her pain is in control. She said yesterday that her plan hadn't worked. When my sister asked what she meant she said shed planned to get better but she's just got worse. I feel so angry that this lovely, not perfect because non of us are, but kind woman. Who's looked after me through illness and cared for my diabetic father from the age of 15 when they first met (she's 76), is fated to leave us in such a cruel way. She does not deserve this. How long is she going to have to suffer, how bad will this pain get. I don't want my mother to go but if this a point that cannot turn around then I don't want her to go through days of increasing agony. Is this what's coming? Sorry for the rambling but this is the first time I've shared this. There have been more than one occasion since diagnosis that I've thought she didn't have long and started preparing myself but she's seemed to get better, I think this time though....

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: How long and how much will mum suffer

Postby sandraW » Mon Jul 28, 2014 4:53 pm

Hi there so sorry to hear what you are going through, I know how hard it is for you and completely understand how you feel about not wanting your mum to suffer but of course you don't want to loose her. This is such a cruel devastating disease.
No one can tell you how long your lovely mum has left, they can give you a guide, but everyone is different, don't give up hope we had heard on here that people have rallied when there medications are sorted and have had more time with their families.
Please post whenever you feel you want to, it helps to just get it all out, just be there for your mum, you obviously love her very much, and I a sure you will find the strength to get through what ever happens next. take care sandrax

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: How long and how much will mum suffer

Postby Sueoliver » Mon Jul 28, 2014 10:41 pm

I just wanted to say Hi and I am glad you have found this forum as the people on it are so nice. I can't answer your question I don't think anyone can. This is a hard journey but the support on here is great. You could ring the nurses on this forum and I am sure they would answer any questions you have.
My mum is also 76 and I understand how awful this all is. I had never even heard of this cancer before my mum was diagnosed and now I feel I know more than I want to know!
Look after yourself and stay strong.
Sue

brodders
Posts: 65
Joined: Fri Jun 20, 2014 7:51 pm

Re: How long and how much will mum suffer

Postby brodders » Tue Jul 29, 2014 9:19 pm

Hello,

The way you talk about your mum, it could be mine. My mum was 76 too and was diagnosed at the beginning of February, she was admitted to hospital with painless jaundice. I won't go into detail about her illness, it seems to me most people are different, the care is dependent sometimes on the health authority and the chemotherapy on their state of health. All I can say is I am totally with you and completely understand how you are feeling. My mum said something very similar to yours, please take care, love, cherish and try to enjoy your time together- it is precious. Stay strong Cate xxxxxx.

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: How long and how much will mum suffer

Postby LMD » Tue Jul 29, 2014 10:45 pm

Hi there, just wanted to say Hello and let you know that I'm thinking of you.
If you want to talk to someone the nurses on here are lovely and very helpful..do give them a call.
Keep posting x

brodders
Posts: 65
Joined: Fri Jun 20, 2014 7:51 pm

Re: How long and how much will mum suffer

Postby brodders » Wed Jul 30, 2014 4:06 pm

Hope you and your family are ok. It's a very surreal time. Thinking of you Cate xx

Mum2three
Posts: 8
Joined: Thu Jul 03, 2014 7:56 pm

Re: How long and how much will mum suffer

Postby Mum2three » Fri Aug 01, 2014 8:18 am

Thank you for you kind words. She's been up and down, much more herself after they pumped loads of fluids into her but it didn't last. She's getting awful pain and they take so long to come with oramorph she lays there in agony and that's when she looks so frail, it takes a while for her to feel better but she looks a little less bright each time. They want her to eat but she only manages a bite and within minutes it's straight through her and that with taking enzymes. She looks like she just wants to be left alone and my dad just wants to take her home and care for her. It's breaking my heart. I want the best for her but I just don't know what that is anymore. She's been moved to another ward yesterday, I think they said its a medical ward. I know there are other terminal patients there. My mothers face last night when the doctor said for her to have an enema because she may be constipated, she is so unhappy in there. Taking dad down later, another day of hoping to see a smile because they've managed to make her a little better.

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: How long and how much will mum suffer

Postby sandraW » Fri Aug 01, 2014 2:58 pm

Hi just to let you know we are thinking of you, its must be so hard for you. Regarding the enema when people get constipated, diarrhoea can bypass the blockage, so that's possibly what they are thinking, hope she feels better soon take care sandrax

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: How long and how much will mum suffer

Postby nikkis » Fri Aug 01, 2014 3:07 pm

Hi there,
Have you asked if there is any possibility of your mum being transferred to a hospice? They are so good at getting the pain under control and supporting you all. It can also be a stepping stone to getting her home if this is what your dad wants. I would also suggests that you speak to whoever is in charge about the delay in getting painkillers as it's not good enough.
Thinking of you all,
Nikki

Mum2three
Posts: 8
Joined: Thu Jul 03, 2014 7:56 pm

Re: How long and how much will mum suffer

Postby Mum2three » Sat Aug 02, 2014 6:58 am

Didn't see her yesterday. Other family members took dad but I kept in touch. He asked about getting her home but they needed to make sure they can cope at home first. All the relevant people were meant to go and see her but no one did and I doubt anyone will over the weekend. Dad says she looks sad and very quite. I think she's just been doped up since she's gone to this new ward. I wonder if that's why she was moved because the other ward wasn't managing her pain effectively. I've read a bit about hospices, not sure what's in our area I couldn't find much on line. Will ask about it. If I didn't have a young family I'd go and stay with them and look after her myself, I do have two other sisters who don't work and kids grown up but what can I say?? Had a very emotional day, ended in getting very drunk. That's happening too much. I know I have to stop because I will never forgive myself if I'm unconscious when she needs me the most. Hopefully owning up here will help me knock that on the head tonight.
Thank you for all your advice:)

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: How long and how much will mum suffer

Postby nikkis » Sat Aug 02, 2014 8:32 am

It sounds like you are doing a good job at keeping everything running, we just have to do whatever gets us through, so don't feel guilty about needing a drink at the end of the day! Just try and take care of yourself too,

Nikki

Mum2three
Posts: 8
Joined: Thu Jul 03, 2014 7:56 pm

Re: How long and how much will mum suffer

Postby Mum2three » Sat Aug 02, 2014 10:40 am

Thanks Nikki,
It's getting too much now. Spoke to dad this morning and he's really had enough of this ward. He said last night my mother was laying on the bed in the nude with the door of her room wide open and people walking past. I'm in total disbelief, I can't understand how anyone working on a ward with terminal patients could think that's ok. He told the nurse he wants her home and he'll just have to cope. I totally understand and feel the same to be honest, I dont want what could be my mothers last days to be spent fighting for her dignity. I don't know what state of consciousness she's in but she would be mortified, they are both very proud and private people. I'm taking dad after lunch and taking my oh with me, he's not affraid to speak up unlike me and dad.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: How long and how much will mum suffer

Postby nikkis » Sat Aug 02, 2014 11:57 am

That is absolutely shocking, I have a nursing background and stories like yours (of which there are too many) make me very sad. From experience people that complain do get better care, I know this as a nurse and as the wife of a complainer! There will be a duty manager on for the hospital so if I was you I would ask to speak to them, no hospital wants negative stories getting out so they will try and fix it. Your local district nurses should provide support to your dad if he takes her home, so make sure that is set up. If there is a hospice or Marie curie locally they will help at home too, the hospital staff should know what there is, and if they don't refer you sometimes you can self refer. If all else fails, if your mum has a good GP, it might be worth contacting them on Monday to see if they can help.
Hope you can get something sorted,
Nikki

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: How long and how much will mum suffer

Postby J_T » Sat Aug 02, 2014 4:10 pm

If you can get her home and you can cope - do it! With the help of the district nurses, who came everyday and the Macmillan nurse and our GP we coped very well with Ray. He was semi conscious for the last week but he was comfortable and had his family around him in his own home and that's what he wanted. Its not feasible for everyone and hospices have an excellent reputation so that's a good option too.

I do hope you can get this sorted out quickly. Good luck and look after yourself too.

Julia

Mum2three
Posts: 8
Joined: Thu Jul 03, 2014 7:56 pm

Re: How long and how much will mum suffer

Postby Mum2three » Sat Aug 02, 2014 8:15 pm

Thanks. Firstly wanted to say that my dad had exaggerated a bit on the phone. When we got the full story my mother was being washed and dad was stood outside the room. The nurse came out for something, closed the door but while it was open my mother could be seen nude in the chair. Still a bit undignified but not as bad as dad had made it sound this morning.
She was really bright this afternoon. I think she was hoping to go home. Dad asked and they want her to stay until Monday to get a blood test and see the doctor. I also pointed out that getting hold of people to make sure her care package is sorted will be impossible at the weekend. If she can come home Monday we can get on to her social worker, nurses etc. The hospital are supposed to be sorting her care package but not been told if anything in place yet.
Her happy mood slipped a bit while we were there and she seems to keep trying to cope with the pain. She was getting increasingly uncomfortable. I asked if she'd had anything and she no, not for about three days. She actually had oramorph last night and talking to the nurse, mam just not asking for it. She thinks their supposed give it to her regular but I think it's just when she's in pain. I told her to make sure she buzzes the nurse as soon as she starts feeling pain and not the wait until she's in agony. I also think she doesn't like feeling out of it.
I get a bit nervous when she suddenly looks better because she often gets a little bit worse when she goes back down. She has puffy feet today also.
Thanks for taking the time to read my ramblings x