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,

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

Hi Jacci,

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

Meeting went as well as can be expected in the circumstances, Consultant did his job well.Mum has got poorly differentiated adenocarcinoma stage 4 , very advanced.Mums first question was will it kill me and the Dr said you will die with this Mary but not necessarily from this which I thought was quite a nice way of putting it.Mum doesnt know prognosis but I have been advised weeks or if she is lucky months. I will post more tomorrow but am truly shattered tonight, Ive literally just got back from hospital.

Thank you all again my virtual friends and hello Brian.

Take care all.

Jacci xx

Hi jacci

I've been thinking of you and your dear mum today

I'm truely sorry to hear your mum had stage 4 lung

Cancer, this must be truely differcult for you to take

In right not and I'm sure your exhausted.

Please take time to look after yourself, and keep us

Posted when you can, much love to you both xxxx

Hi Jacci

Hope you managed some 'recovery' sleep after such an emotional day.  Though not nice news to be given it was good to read that your Mum has a doctor with a good bedside manner.  Your forum buddies are hear to listen whenever you feel able to post.  In the meantime sending virtual hugs and peaceful thoughts as you continue the journey as a family.  Jules xx

Hi Jacci,

I'm so sorry that your Mum's prognosis was not good; it does sound like the doctor is compassionate though which may be of sime comfort. If you are anything like I was you will be rushing around on auto-pilot: try and get support from whoever and wherever you can. Am wishing you strength at this difficult time and we are all here for you. Hope x

Hello everyone, I actually feel like my brain and emotions have been put through a washing machine today.

I could not be a Dr you know, how they do the bad news thing I dont know. He was nice though, he made sure that I knew why I was there and forewarned me it wasnt good news before we went in to see Mum, obviously I knew but that was lovely of him.

I would really like to dig myself a hole somewhere and just stay in it tbh but I know that I cant do that, Im so tired, sad, worried and I feel guilty (I will explain that in a mo) this morning it all feels too much but once Im up and about those feelings will just have to be put away as they wont do Mum any good at all.

I saw the Macmillan nurse yesterday, she  was with us when Dr told Mum her results.She was a very caring lady, she kept asking me how I was I said I was ok and just wanted to look after Ma as that is all I can do for her now.Ma is desparate to come home and that is what they are going to arrange, she is still very disorientated but much less confused than she was...now this is where the guilt comes in, my heart feels that if Mum goes home I should move in with her, they are going to arrange carers 4 times a day so I could travel to work and back so Im with her overnight,Both the Macmillan nurse and hubby have said that as I would have to travel 2 hrs each way and work during the day it is a very bad idea....the nurse says I must look after myself as things will only get worse and I will  need to be well....I have backed down and said I will stay over a couple of times a week but I was brought up a Catholic, not that I am now. and Catholic guilt is extreme! Therefore in my mind Im letting her down, I know in my mind its not rational but there you go.

Mum thinks she will go home, get herself back to normal and that life will be the same for her, obviously thats not the case.My normal Ma would hate having carers and would hate all the devices they are going to put into her home and would hate me for letting them do this.They have said that when the time comes they will arrange a nursing home or hospice nearer to where we live. Also, bless her she has now got a chesty cough, this is a new symptom.

Well that is all my moaning done for now, thank you all so much for understanding.

Take care,

jacci xx

Hi Jacci

Please do not feel you are moaning.  This is such a raw emotional time for you and whilst Iknow exactly what you mean about wanting to be there for your Mum, you will  need lots of stamina just to cope day to day with your own feelings.  In no way are you letting your Mum down by letting the professionals give her the full care she deserves and that they are trained to do.  I can understand the 'guilt')though my Dad kept telling me this was wasted energy bless him) feeling as my Dad had to have carers even though my Mum was still with him then(she was in her eighties).Physically and mentally she was unable to cope with the care level that was necessary and actually though myDad was notkeen on having 'stranger's in the home (nor my Mum for that matter) he did realise that the carers had exactly the right amount of emotion/caring to take control and the family was always on the end of the phone if required. He spent the last 10 days of his life in a hospice close to my their home and it was a wonderful support for all of us.  This is not an easy decision/journey to take but you need to be as well as can be to help you to cope.  Your forum friends are here when you need to chat and we all need to do that from time to time - its all part of the 'coping'mechanism I have come to rely on to get me through the days. My thoughts are with you.  Jules xxx

Thanks for that Jules, I do know you are right really if I was talking to any of my friends I would say he same thing to them. Its just the heart versus the head thing isnt it. They asked me about the CPR issue yesterday as well, I said not to resuscitate.....I know that was the right choice but again its the heart versus the head thing.

You take care Jules,

Jacci xx

Hi Jacci

Heart ruling our head is human nature and none of these decision are ever ones we want to have to make.  My Mum lives in a  residential care home and she herself chose the not to resuscitate clause when she discussed her care plan.  I found out later when she gave me permission to be 'in the know'. Of course that saved me a difficult decision myself and with her previous mental health issues was not a surprise but still hard seeing it in black and white.  Look after yourself  Jules x 

Hi Jacci,

I cried when I read your post, what you are going through and the guilt you are feeling is like de ja vue to me so I really want to offer you some reassurance and hope that my experiences can in some way help you.

Just like your Mum mine was desperate to get home, she didn't know her full diagnosis (never wanted to) and like your Mum had unrealistic expectations of what would happen once home.  I was so worried and didn't think it would work, however I had brilliant carers and Mum managed at home for 7 weeks before going into the hospice the day she died.  Although it was hard and although I too have guilty feelings, I am grateful that we managed for that long. I went round several times every day and phoned her constantly (while she was able to use the phone).  Although I was there a lot I didn't move in; when Mum was stable the carers put her to bed early, I would pop in later and she'd sleep around until the morning when the carers returned. In a way I do feel guilty that I didn't move in but I was trying to stay well myself (mentally and physically) so that I could do my best and I knew I couldn't cope if I was there 24/7.  Nobody can be a 24/7 carer and I was terrified knowing what to expect having just been through it with my Dad.  Spending some time at my own home with my own family was vitally important to me keeping my sanity and somehow muddling through my part-time job also helped (although I did have time off).

Things deteroirated quickly at the end so Marie Curie came in during the night (they only offer 3 nights a week).  We knew it would be impossible to cope much longer so Mum went to the hospice.  It was the hardest decision I've ever had to make and one which I still question myself about mostly because nobody expected her to die the same day she went there.  However I know deep down that it was the right decision, the hospice was an amazing place and sometimes we have to realise we can only do our best and let the professionals take over.

You must do whatever you feel is right for you and your Mum, and I can tell you that you will always have feelings of guilt whatever your choices.  But try not to be too hard on yourself, your Mum will be wanting you to look after yourself too you know.  Try and get as much support as you can, do whatever you need to keep yourself sane so that you can be there as a daughter for your Mum.  It is hard looking after somebody at home and sometimes the practical side of caring doesn't allow a lot of time for being a daughter.

It sounds like your medical team are good which is wonderful.  I had a lovely MacMillan nurse who was so kind to Mum and also so kind and worried about me.  It is good that your doctors are compassionate, I had a mixed experience of some good and some not so good.  My eldest son is training to be a doctor and I'm sure the experiences he has been through enable him to have much empathy when it comes to him being the deliverer of bad news.

I hope I haven't rambled too much and I hope that you can find some help from all your virtual friends on here.  Thinking of you.  Hope x

Thank you all again for your support,it really helps to talk to people who really know what  you are going through but very very sad that we have to find ourselves on here in the first place. I really dont know what to do about Mum. She is much more lucid now, most of the time, although she thought she was in Ireland today and told me the Drs need to inject some dye into her eyes to treat her. The rest of the time she knows whats going on and is so so depressed..she said she wishes she had never been born...very sad.

My main concern now is she is so weak, she is even saying how weak she is...I dont know if she really should be going home at all, Hubby came in to see her today and he said she shouldnt be and that in no way could she take care of herself even with carers coming in.The problem is she desperately wants to go home and get herself back to normal but I dont think she will be back to how she was before,well obviously I know she wont. I have got to call the occupational therapist on Monday, do I voice my doubts or do I hope that they know their job and wont send her home if she isnt ready?

I hate this all so much, not only is this disease going to rob me of my Mum,its in danger of making her last few weeks/months a misery...she has always said she wouldnt go into a nursing home because they can do what they like to you in there. Thats one of the reasons Im worried about saying anything as I dont want it to be my say so that takes away her independance....this whole thing just gets worse and worse.

ThenI think (Catholic gullt again). should I just give up work and move in with her and look after her till she has to be taken care of somewhere else? I know I wouldnt want my children doing that for me but maybe Mum would...I dont know what to do for the best for everyone...right rambling again so I will go but thank you all again and Im truly sorry we have to be here.

Take care,

Jacci xx