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

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

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

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