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My gorgeous mum is now in hospital with secondary stomach cancer. This started as ovarian 4 years ago. She has just been taken off her 4th course of treatment as she can't stop being sick....her legs have swollen to 4 times their size and she can't eat. She is on a drip and is practically bedridden. Although she seems woozy, she is still mentally bright and I am finding it heartbreaking to watch all of this happen and now the docs say there isn't anything they can do. I personally think she has a bowel blockage, but the docs say not. I know you have to trust them , but i don't feel like they are doing enough.
Does anyone elso have any similar experiences they can share with me. I have a strong family and friends but i can't stop crying and feel so alone.
Thanks so much
I know how you feel. My mum is dying of cervical cancer that has spread to her other organs. She sleeps most of the time and is barely awake for a few minutes at a time, unable to eat and swallows the odd sip of water etc occasionally. We are trying to get her discharged as soon as possible so she can die at home. It is truely horrendous but try to be brave, you are not alone. I hold her hand and treasure that and appreciate these last few moments we now have.
not defending doctors in any way but the fact that your mother is not eating and is on a drip means she is not digesting any solids therefore no need for bowel to work
if you have lost confidence in doctors you always have the option to ask for a second opinion
my heart goes out to you i was in a very similar position back in december 2008 with my wife and it's not nice to watch someone you love so dearly going through all this you just have to be strong and hang in there
i managed to get my wife home in january and although she is not any better she is where she wants to be
but be prepared it's very hard work
I went through seeing my Mum die of breast cancer but it was a long time ago (1981). All you can do is accept that is the case. You don't want it but you have to put up with it. It is not nice but perhaps you can get her home (and fortunately my Mum was at home when she died and I managed to look after her with her three little grandchildren about her. She was very mentally alert but she just faded away so make the most of the fact of your mother being mentally alert and spend time with her and do what you can to comfort her. It is a very distressing time, I know, but if you do all that you can you will not regret it afterwards.
Don't feel alone. Come to this site where so many people know what you are going through and just do the best you can. And turn to your family and friends who probably feel the same. I am an only child but I got great support from my mother's two sisters. Just make sure your mother has effective pain relief.
Plough on, Judith
Thankyou to all the replies so far. It really does help that I am not alone in these feeling of utter helplessness and despair. I really am trying to be strong but even taking the kids down to school and getting a knowing smile or squeeze from a friend sets me off! I have doen so much deep breathing that my lungs think it's their birthday!
Now comes the task of trying to be there for my dad. Mum has developed this terrible cough which is sapping her of even more energy. The docs won't drain her lungs or stomach to ease the situation. How can this be when it will make her more comfortable? Dad rings me up in tears.....
We are hoping to transfer her to a hospice soon where as least she will have some degree of help. My dad feels guilty but he needs the space at night. At least the family can all be with her without the restriction of hospital visiting hours. Any advice re hospices and levels of care would be useful.....and if there is anything else i can do really to make me feel better....my dad feel better and my mum feel better.
Lots of love to you all and thinking about you too
I have no personal experience of hospices but those people who have say nothing but good about them. In my mother's case it was easy to look after her but in some cases such, perhaps, as your mother's it may be easier to try and get her into a hospice. I'm not blessed with nursing skills (and a lot of people are not). It depends on how your Dad is coping and he should not feel guilty if he can't cope with all this. I think you have to tell him that your mother will be more comfortable in a hospice where people are trained to look after such situations.
As for draining off fluid to help your Mum it is a difficult procedure which may cause considerable discomfort. Yes - I know what you are trying to say but I would leave it to them. Perhaps if she was in a hospice they may consider doing this if she has round-the-clock nursing care.
I really don't think any of you should feel guilty. I suspect your Mum would be horrified if she knew the extent of your feelings. So try and get her in a hospice ASAP and just know this is the next stage of this terrible game and in the long run it is best for her and all to know she was getting expert help. A very difficult decision, seemingly, but I do not think I could cope myself with this situation. Every case id different and this is one where she should be with nurses expert in this sort of thing. As you say you can go and be with her whenever you want. And that is the main thing and it will take a terrible strain off your Dad.
With love and thoughts, Judith
unless your mother is getting nursing care on a 3 patients per nurse ratio i would get her out of the hospital ASAP when my wife was in the ward had 28 beds in total with at times only 3 nurses on duty totaly inappropriate for people in this condition ideal would be one on one but you and i know thats not going to happen visiting restrictions are also prohibitive
hope you can find a suitable hospice nearby so your dad can visit easily and stay as long as he likes and you can drop in whenever it suits you
Hi lovely people
Thankyou for reading and your continual support.
My mum is now havind a drug for her fluid...72 hours after I suggested it to he doctor. Frustrated isn't the word but it is what it is.
We have found a very caring hospice and she is being transfered today. We were told that the level of care she needs couldn't be met by home care, so this has at least been a comfort to my dad.
I have written a letter to her to read in her own time which has helped me too. I am still managing to see her every day, which i find exhausting but i need to give her that hour of massge to bring her peace. It seems that is the only time she stops being sick and coughing...amazing really. She talks without emotion and i am finding that hard....but relieved that she isn't getting upset and instad has an inner calm.
I love her so much that I am finding this sooooo sooooo hard. It's a great diet...not that i had 1/2 stone to lose in the first place. I am eating and trying to look after myself and my dad and family though.
Any comments or helpful stuff .....thanks xxxx
PS My chin is so far up my head has doubled back on itself and i can almosw walk backwards!!! Am sure you are the same xxx
Glad to hear your Mum is going to a hospice. If she is very sick I'm sure your Dad will be very relieved. I suppose the drug she gets is one of those diuretic things that makes you wee quite often. One can have the fluid drained but as I think I said before the procedure is not without its difficulties.
When my Mum died at home it was very easy - just a gradual fading away, but with symptoms like your Mum has got then she will be far better off in a hospice.
One awful thing that I found myself doing - and you might find the same - is that for the last few days when my Mum really was fading away I used to think "I wish I could walk into here and find her dead". I felt guilty about this feeling but on talking to other people in similar situations one just wants one's loved one to be at peace. This happened recently with a friend with motor neurone disease and his daughter said the same. Well everyone was very relieved when it happened. I'm just warning you about this in case you think it and feel guilty.
I think to speak without emotion means that she has accepted things and does not want to bother any more. Just spend what time you can with her and take your children to see her. My Mum derived comfort from seeing her little grandchildren. And don't forget your poor Dad. A lot to bear for you but I guess you'll pull through.
With many thoughts for you and I hope things will go peacefully for your Mum. Judith
hi hammie 36
it always amazes me how after you suggest something two or three days later it becomes a good idea it's as if i didn't think of that so we won't do it scenario now why didn't i think of that as you so rightly say most frustrating
i am realy pleased you have found a nice hospice for your mum and you can visit every day
you are not alone in finding it hard my wife MO has asked me for some refuse bags and will i give her a hand to clear out her clothes and take them to the marie curie charity shop fortunately my son is coming this afternoon dosn't know it yet but i may just delegate task
as for your mum talking without emotion thats her way of trying to protect you i am fine when MO is like that it's when she breaks down i find it hard to handle
you have to look after yourself because if you don't you will only be an additional burden on everyone try and get some of the inner calm your mother has
look after yourself and family my thoughts are with you all
You have done so well in supporting your mum, especially over such a long period of time. Your Mum must be so proud of you.
I thought it best to reply to your post from Jampot's board here instead, I hope you don't mind.
From reading all your posts and the responses you have had I think you have been amazing. Four years is a long time for your mother, you and your family. I can't imagine what it must be like, my Dad died with cancer on 23 Dec 08 and we only found the cancer on 9 Nov 08. So for me it was very quick, my Dad was oblivious as he was in a confused and incoherent state. It wasn't easy, but the common thing we share is the final stages of life when treatment has to stop. I feel awful writing that as I know you are struggling now.
You found her a hospice, your Mum will have the right care and the right people around her. Getting your Mum away from the hospital was the best thing you could of done. My Dad had to stay in hospital and as one of your posters have said, you do not get the attention for your loved one as you would in a hospice. I can vouch for that.
I feel you have done the right things so far, writing a letter to your mum is a real positive thing, because you are telling her how you feel about her and sharing your love to her while she is still able to. My GP, and my friend recommended I do something like that and I did. Sadly, my Dad was not able to read it, but I know what I wrote and I read it to him when I said goodbye so I know he knew what I wanted to say. It's part of the grieving process. Hopefully, you will find comfort in knowing that you did that. I know I do.
You must try and give yourself some rest when you can, being with your Mum now will be exhausting, as it is so difficult to leave them and you don't know how long it will be before they fade away. Again, another poster (sorry for not using poster name) said, you may have a thought about wishing for all this to stop, these thoughts do happen. Only because you can't stand seeing the loved one suffer anymore, plus its just so distressing waiting, watching, wondering when, wanting to be there to the very end etc. My sister and i took it in turns to be with my Dad, my sister was able to sit through most of the last nights before he passed away. I couldn't I would sit to about 1030pm to about midnight and then go home and rest. My sister would take a break in the morning. For me it was too distressing watching my Dad and waiting for him slip away. I needed to take time away and I would do this by walking in the gardens of the hospice where my Dad would of been, walking on the beach, finding a quiet space where I could reflect, think about my Dad and not be distracted by the hospital routines etc. The peaceful ness of it all was so comforting. Believe me, the hospice is a good place rather than a hospital. Maybe if my Dad had been at the hospice I could of coped better, but I won't ever know that. All I know is I did what I did and it was right for me. I felt guilty for leaving my Dad, but I believe he would of wanted me to have a break and give him a break too.
Make the most of the time you have with your Mum, cherish every moment, it will help you now and for later. To help you prepare yourself for the next stages the pallative care team, should be explaining what happens. If, you do not know and want to know speak to the Macmillan nurse or the team. I was given a leaflet which explained, but I could always go and talk and ask questions, because its not all text book stuff. A leaflet doesn't cover it. That's hospitals for you, hopefully hospice's have more face to face contact. The information in the leaftlet did explain things though, not everything but enough.
Hammie, my thoughts are with you and your Mum, you are being strong, I know emotionally and physically you are exhausted, but be proud of yourself for how far you have come, you will get through this, it just takes time. I'm still raw, trying to make sense of things, but I have a good support network and I am taking little steps all the time. I miss my Dad enormously, but I comfort myself that I did everything I could for him and that his family was with him when he slipped away. He's at peace now and ultimately, that is what I wanted for him, when there was nothing else left medically to do.
Take care Harryboo
Harryboo - what a great help to all in this position. I heve seen your posts to Jampot and am glad you are able to support each other in this way.
Even though it is a long time since my Mum died I still wish she were here to see her grandchildren (she saw them but they were very small). I've got 2 grandsons and a third grandchild on the way so I would like to be around long enough to get to know them properly. One of my mother's sisters is now 91 and was a second mother to me. She enjoys seeing her great-great nephews!! (my daughter's two lads) and regards them as her great-grandchildren.
So life goes on and you can only do the best you can at the time and then there will be no regrets.
Thank you for acknowledging my support to Hammie and Jampot. I share my experience (very limited in living with cancer) of losing someone with the posters here as I know how much I wanted help and support too. I wasn't lucky enough to find this site when my Dad became ill, but I found it later when Dad had passed away. Helping others to find comfort and support makes my loss less painful and I feel I am doing something positive.
I've seen your many posts and I know you have a lot of experience and have shared it positively with others and me, when I initially came to this site. To share such personal, distressing experiences and find support and comfort has been emotional, inspiring and informative. To help people move on is important. If, any of my experiences can help anyone then I feel I've achieved something for people living with terminal illnesses.
Keep up the good work Goldenbird.
Keep strong Hammie and Jampot.
Oh wow, Harryboo, Goldenbird and Cluckie ( and to all other posters)
Thankyou from the bottom of my heart for your advice and support....you are wonderful, brilliant people.
The hospice is wonderful. Her room and level of care is wonderful. I wish i had got her here sooner , but we were always holding onto the 1% hope the hospital promised us.
My heart is breaking......I went to visit her today and broke down before i got through her door. A nurse ( who unfortunately had been eating garlic bread!) guided me away in order for me to compose myself. I asked her what the doctor said this morning and she looked at me and said what I already knew...which is that 'she was very poorly' and 'there wasn't long left' .....she was very kind and tried to word things in a caring way. I still want someone to wake me up from this nightmare...but I know that they can't.
She read my letter.....she said how lovely it was...but she hasn't the energy to cry. She can hear everything I said to her and she managed to suck a quarter of a wherthers original! Who says they are just for grandpas?!! God am I going mad. Sorry for rambling.
She had her eyes closed and enjoyed a head tickle I gave her. Relief from her wig I think. Me and my brother cried to each other across her bed.
Then I put Katherine Jenkins on the stereo and kissed her goodbye. I hope to see her tomorrow.
My dad phoned tonight after visiting her and followed by 2/3 of a bottle of wine to say that she wasn't coughing as much, had had some sorbet and was breathing heavily.
This past week seems to have hastened everything so fast, but thinking about it she has been poorly so long, apart from a wonderful year of remission 2 1/2 years ago. Maybe I have been in denial...always hoping...always wanting to be positive...guided mostly by my mums determination and strength.
Missed my friends 40th tonight. Couldn't go.......no amount of makeup could cover the pain of today.
Still not sure how to cope, but thankyou for your caring suggestions.
Night night...god bless. xxx
My son made her a get well card today, with a picture of her and a huge mountain with a sunny sky. Maybe its the one we all need to climb over , over the coming days.
hello hammie 36
thank you for those kind words
what a moving post just try an stay strong for your family
thinking of you all