GP is ringing her tomorrow morning....letter just says he needs to discuss some test results with her. Bless her she says she is starting to get breathless again, I hope it isnt the fluid building up again. Mind you chances are it is I suppose.

Jacci

Hi

Have just caught up with your thread (internet access has been up and down).  Wish you and your Mum all the very best for her next appointment/discussion with the doc. and hope she can have a peaceful Christmas and be kept pain free.  (My hubby has cancer of the lung membranes  and I am aware of the breathlessness /pain problems that your Mum will be experiencing).  Do hope she can give her doc permission to discuss things with you which may make it easier for you to help her through any discussions that take place.  I usually go with my hubby for his hospital appointments (he knows only too well what is going on as he wanted to know right from the beginning(but does not find it easy to talk about from a very emotional point of view - diagnosis was nearly two years ago now and he has palliative care involving pain relief/regularly check ups)  as he prefers not to discuss things more than is necessary.  The only thing I would say is to take a notepad/pen both with the questions you/your Mum may have and also to jot down anything the doc may say so that you can refer to it afterwards (I find it helpful as very often its hard to take it all in at the time).  The forum is a very supportive place and its a good place to offload anytime you need to share your thoughts/emotions.

Take care.  Jules54

Hi Jacci,

Have just been reading through your posts and just wanted to say how sorry I am for what you and your Mum are going through.  This terrible disease affects not only the patient but all those who love them, and to watch somebody suffer with cancer is indeed beyond cruel.  I lost both my parents to cancer within 5 months last year and I can appreciate the suffering you are going through at this moment.  I wish there was something I could say to make you feel better.  Sometimes we think we can't go on anymore but we do somehow find the strength from somewhere. Wishing you strength.  Hope23 x

Hope, I do not know how you coped  but in the end we have to dont we I suppose, I know I will cope for my Mum because I have to be strong for her I am all she has really.I have 2 sons, 21 and 25 and hubby is going to tell them for me, the eldest doesnt live at home so I havent seen him since xmas as Ive never been around and my youngest Ive hardly seen as I  have only been at home to try and sleep. They do both know their Grandma is very poorly but they dont know quite how bad things are. They will probably come and see Mum this weekend, that will be emotional for everyone. 

Well I will go and see Ma tonight, if I had my way they would put her into an induced coma, I hate to see her like this, she is frightened, confused, pathetic ( and I really dont mean that in a horrid way), well all I can do is be there for her but it really doesnt seem enough somehow.

Take care ,

Jacci xx

Hi Jacci

I don't think anyone here knows how they cope but somehow we do.  With my Dad is was hard knowing I was to lose him (nearly 6 yrs ago now) but quietly reassuring that he would no longer be suffering and he was so comfortable in the hospice for the last two weeks of his life and they were so supportive of the whole family.  I do hope that your Mum can be kept comfortable and whilst  I have  no doubt that the visit with your sons will be emotional for everyone, you are doing it together and having two children myself who went through this  you will help each other  through. When my hubby had full diagnosis facts we called the children round and broke the news together to them, cried together andnow continue to takestrength from each other.(unbelievably nearly 2yrs have passed since then and we hope for more).   My thoughts are with you as this is an emotional period to traverse through but with your family/friends and the forum around you please do not try coping alone.

When my Dad was unable to chat much my Mum read poetry and did her crosswords as she found it hard sitting doing nothing  (mind you she was in her early eighties and more spritely then than now.

Sending virtual hugs along with a virtual shoulder to lean on.  Wish I could offer more.  Jules xx

Hi Jacci,

I don't know how I coped or how any of us do, but I guess we really have no choice.  Like you, I was all my parents had (I'm an only child), so I carried on going through the motions of everything that you do when somebody is so ill.  I also have 2 sons aged 17 & 19, and they (plus hubby) were my rock and still are as I still have bad days coping with the roller-coaster of grief.  I'm sure this will also be an emotional time for your sons but I'm sure they will also be a great support to you.  I understand entirely your comment about wishing your Mum could be in an induced coma, it is beyond cruel watching those we love suffer.  I'm sure you've been told this before but try and take each day at a time and be kind to yourself, remember you can only do your best.  Hope x

Well last night was very very sad, all she is really doing now is moaning and talking to herself...its all poor me, why me, I have never done any harm to anyone...it is distressing to say the least. Mentally she is failing very fast but the morphine doesnt help Im sure.Physically she doeant seem to be in as much pain at all although she says she is.....but you can tell she isnt..I think she is getting reliant on the morphine...she has been on it now for at least 10 days or so.

Mum said a nurse came round to see her today talking about how she can manage at home....if they do send her home I will have to move in with her, I couldnt leave her on her own.

Anyway take care all.

Jacci xx

Hi Jacci,

I'm so sorry to hear how bad things are and I understand how distressing it is for you to witness.  It is difficult managing at home; I got my Dad home as was his wish and he died 3 days later, my Mum managed at home for 7 weeks but went to the Hospice the last day.  We had brilliant carers and district nurses, I didn't move in but was round there constantly.  Looking back I wished I'd moved in but I was trying to juggle so much and was actually terrified of watching the same cancer that had just taken my Dad take my Mum.  The Hospice care was amazing and was a much better environment than any hospital round here. I hope that they continue to control the pain for your Mum, I am sure they will; that was my only consolation that neither of my parents suffered too much pain.  Please take care of yourself and take support from others as much as you can.  I found this site a great help to me during my darkest days.  Sending you a virtual hug Hope x

Thanks Hope, well will see what today brings.....it is horrible just sitting there when she is saying things like why was I born etc. All I can do is be there for her I suppose. I just wish she would be more capable of having a conversation but if she does actually talk to me its to say things like...I dont know why I bought that new jacket...I wont be wearing it now.She doesnt know that the chances are there will be no treatment for her so Im dreading when they tell her that. She also doesnt like the nurses talking to me, one was talking to me last night just about the trains being bad and Mum statred groaning loudly as if in pain, when the nurse left she was fine!

Well I suppose we will have an appt soon once they know exactly what form of cancer we are looking at. Being selfish I am totally exhausted but was supposed to work on Sat morning and have cancelled that so hopefully can have a lie in then. Im finding I cant sleep at night but after 6 which is when I should be getting up I can sleep like a baby then! Did that this morning, woke up at 6, Hubby made me a drink and then woke up at 8.02, thank goodness my son was there so he could drive me in!

Take care,

Jacci xx

Hi Jacci

Really sounds like  you need to get some rest for yourself so hope you manage that lay in on Saturday.  Its so hard that 'normal'life has to go on hold.  Though my Mum is still around she is in residential care at present as there is no way she can look after herself (mobility and mental issues) and I am not in a position to look after her (like Hope am an only child too but have never had a great relationship with my Mum) and now my priority has to be my husband.  I am sure visiting every day is very tiring and it sounds like the morphine is causing her personality changes though to be fair the older I get my patience gets a bit thin at times!!  Hope now that your husband has explained the situation to your sons, they can offter you some comfort and support - sometimes just a hug and no words is enough to make me smile despite all that is going on.  Will hope that you have a better visit with your Mum today.Take care  Jules x

Aah Jacci, it is so hard for you.  You are right in saying all you can do is be there; even when we know somebody we love is very ill it still doesn't stop us getting a little frustrated by their ways.  When my Mum was in hospital she was so depressed, I used to go and see her all the time and she wouldn't hardly talk to me or if she did she would just repeat how she hated the hospital; so I sympathise with how your Mum is. I used to feel like my heart was breaking but somehow carried on. I have also had the "selfish feelings" but let me tell you, you are not selfish at all, we are only human and can only bear so much, but we tend to forget that.  You must have some time for yourself because it is exhausting going through this journey.  Sleep is a difficult one, I found my mind was either racing at 100mph and I couldn't sleep or I was so totally exhausted I couldn't wake.  I used to listen to a relaxation tape I had and found that helped a bit. Take care & keep in touch.  Hope x

Just got back from hospital and tonight was strange. When I first got there she didnt really recognise me, I think she thought I was a nurse and she asked me and I quote..what is the time tomorrow...The drugs are really affecting her I think. She actually said the pain was better today which is wonderful to hear.Then she said hopefully its not as bad as they think so she did seem a bit more positive.

She keeps making this almost cross between a humming and moaning noise and all she kept saying for the rest of my visit was I dont know what to do, God I dont know what to do. About 7.00 she asked me to go and get a coffee and then when I came back she said that she was sorry but she was very tired. I asked her if she wanted to go to bed, she said yes and then said Im sorry can you go home now! I said of course I can if you are tired and that was it, back home I came.

Initially I was quite happy tbh as Im so so tired but now Im starting to worry....However, I will enjoy my early night..Im in my bed now in fact.

Dont quite know what to make of tonight at all...

Anyhow good night all.

Take care,

Jacci xx

Just got back from hospital and tonight was strange. When I first got there she didnt really recognise me, I think she thought I was a nurse and she asked me and I quote..what is the time tomorrow...The drugs are really affecting her I think. She actually said the pain was better today which is wonderful to hear.Then she said hopefully its not as bad as they think so she did seem a bit more positive.

She keeps making this almost cross between a humming and moaning noise and all she kept saying for the rest of my visit was I dont know what to do, God I dont know what to do. About 7.00 she asked me to go and get a coffee and then when I came back she said that she was sorry but she was very tired. I asked her if she wanted to go to bed, she said yes and then said Im sorry can you go home now! I said of course I can if you are tired and that was it, back home I came.

Initially I was quite happy tbh as Im so so tired but now Im starting to worry....However, I will enjoy my early night..Im in my bed now in fact.

Dont quite know what to make of tonight at all...

Anyhow good night all.

Take care,

Jacci xx

Hi Jacci,

Hope you managed to get some well deserved sleep last night.  Regarding your hospital visit last night I think that medication together with the disease in general is probably causing the responses from your Mum. My Mum wasn't on a lot of medication but her memory (which was failing a little beforehand), got increasing worse with the illness.  I will never know how much of that was perhaps the onset of dementia, illness, grief, depression or a combination of all of them.  You are doing your very best for your Mum and that is all you can really do.  Do be kind to yourself and keep us updated on how things are going.  Hope x

Just had a phone call from hospital, Consultant wants to see me tomorrow at 1100 on Mums ward. They must have results so will be telling us tomorrow. Absolutely dreading it.

Take care,

Jacci xx

Hi Jacci

I see that lovely Hope has been keeping you in her thoughts.  She really understands the situation you find yourself in having been through so much herself.

I see too that you have an appointment with your Mum's consultant  tomorrow and can understand why you must be dreading what news this will bring especially as your Mum sounds like the medication she is on is making it difficult for things to make any sense to her.  My Dad rambled a lot of nonsence when on the morphine medication and its hard not to react at the time.  We used to talk it through after we left him to sleep. Sometimes our visits were minutes rather than hours, we just had to be guided by his mood/hospice staff recommendation and Mum got through endless cuppas along the way.  Please come and chat with your forum friends when you need to and am sending virtual hugs and will be thinking of you tomorrow as your continue your journey with Mum. It wont be easy to sleep I know but try and catch up when you can.  Jules xx

Hi Jacci,

I'm sure tonight is going to be difficult for you as you await tomorrow's meeting.  I can't think of any advice to give you to make the waiting better. For me although the facts were difficult to face I still wanted to know everything, that's just the kind of person I am - I needed to get everything straight in my head. So after I'd had meetings I felt that I could process things a little better.  Depending on what king of person you are maybe this will be the same for you.  Will be thinking of you, please post and let me know how things are.  Hope x

Hi, well that was a very strange visit tonight, she is so high on meds she didnt really know where she was, she kept thinking she was in a shopping centre and thought she had been to a park this morning. I had a look at her med charts and they have put a note on to say she is extremely sensitive to opiods,they were giving her hallucinations, and they have crossed the oxymorph off the list and I think have changed it to oxynorm. She has low sodium levels so drs have restricted the amount of fluids she is able to have. To be honest at least she was happy tonight and she did have some lucid moments where she asked me if I thought she was getting dementia and I reassured her it was just the meds.

One thing I noticed was she has had a blood test today and also has a cannula in her other arm with 3/4 ports and they have started her on Nystatin liquid 4 times a day to wash her mouth out with, this makes me think they are going to do palliative chemo but I will obviously find that out tomorrow.Also she said she saw the Dr today and a palliative care nurse or a nurse beginning with P as she said and they said she would be able to go home after the weekend , well we shall see. They have put her in an adult nappy thing which she wasnt very happy with but it was nice to see her smile, drugged up or not.

Well I will see what the Consultant has to say tomorrow, she doesnt know about the meeting so I didnt say anything to her.As much as Im dreading it it will be very helpful to know all the info they can give me.

Take care and thank you so much for your support it is helping me so much.

Jacci xx

Hi Jacci,

Sounds like the meds are causing your Mum's confusion, but you know so long as she's not in pain perhaps it is quite nice that she thinks she's been shopping and to a park - better than realising you're in hospital. My Mum was prescribed Nystatin liquid when she was in hospital because she got thrush in her mouth, not quite sure why, probably just lower immune system; anyway she had Nystatin for a week and it got better.  Good luck at the meeting today, I hope you are able to get answers to your questions.  I'm so glad I have been of some help to you; the people on this site helped me so much during some of my darkest days, and continue to help me as I do still have them sometimes, so if I can help someone through their dark times it is a good thing.  Take care and let me know how it goes.  Hope x

Well today is the day I find out what is going on with my Ma, I feel the worst I have felt during this journey, if I let myself I could sit and sob but that wont get me anywhere today will it.I dont know if Dr is going to see me and Mum together as Mum mentioned nothing about the meeting yesterday and if she is as confused as she was yesterday she wouldnt be able to take it all in anyway. I am meeting Dr on the ward so I will hide from Ma I think until I see him and then find out if we are having the meeting together. Its all so confusing but at least by the end of today I will know all I have to and will be able to help and support Mum through this next part of the journey, whatever that entails.

Take care all,

jacci xx

Hi Jacci

Will be thinking of you as you attend the consultation with your Mum's doctor today and am sure you are very apprehensive which is only human.  I know what its like to hold back tears but when you have time for yourself (easier said than done) let it happen and it does bring with it a certain amount of release. virtual hugs Jules xx

Hi Jacci,

I don't remember if we have spoken before or not but I have been reading your story on a regular basis. I do understand for I know all to well from my own experience how painful it is watching someone we love suffering from this evil disease. I felt so inadequate when watching my mother who had breast cancer. It was eight years ago yesterday that I lost her.

I will think of you today and hope that you get all the information you want. Take care, best wishes, Brian.

Hi Jacci,

Have been thinking about you today and wondering how your meeting went?  I hope you are OK.  Hope x