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

So sorry to read that your Mum not doing so well and do hope they will soon be able to get her pain under control. I know from years back when my Dad was in hospital, he hated to make a fuss and rarely told the nurses how he really felt so we acted as go-between (sadly behind his back!) so they adjusted his medication and eventually found the right levels to keep him comfortable without being totally out of it.  They certainly did not consider sending him home whilst on full time oxygen but I do have a n elderly friend now who has oxygen at home more or less 24/7 as she preferred to be at home and our local hospital arranged for district nurses to call to help monitor her situation.  She also has mini oxygen tank so she can be taken out in her wheelchair when she feels up to it.

  Hope the bronchoscopy can get to the bottom of the problem and she can be made more comfortable soon.

Look after yourself too.  Jules xx  

Hi Sunshine and Jules, well Mum does have a collapsed lung, they havent mentioned her coming  home again thank goodness and bronchoscopy is happening on Tuesday.she is in a lot of pain,its worse at night and they have been giving her tramadol but it isnt helping.They did give her morphine one night as well but that didnt help either.

Dont know whats happening regarding the consultant appt on the 8th now as I cant see they will have the bronchoscopy results by then. I will ring the lung cancer nurses on Monday to find out.I cannot believe this has been going on since Sept23rd....well I can spend longer with her for the next couple of days as its the weekend so thats something.

Take care all xx

Morning jacci

Assuming you are in the UK you had an early start!!

Thanks for giving us an update and it would seem you are a little clearer as to what is happening with your poor Mum.   The pain situation must be so difficult for you to watch and frustration sets in when medication does not seem to work when all you want is for her to be free of pain so that she is more comfortable. Two years into my hubby'sjourney Iknow how quickly medication changes can be made (sometimes just hours can make a difference but it can take a while to find the right 'cocktail' especially with the symptoms are constantly changing). Hopefully your Mum will soon have some answers as to what is going on and a better treatment plan can be put in place.  It will be nice for you to be able to spend more more time  with her this weekend.It must be hard trying to juggle work, home,visiting etc.  So far I have not had to face this  difficulty as hubby is under palliative (pain relief only at the moment) care at home with alternate check ups between consultant at hospital and our GP.

Hope your chat with the nurses on Monday and your Mum's bronchoscopy on Tuesday can shed more light on her situation and wish you well.  Remember to look after yourself too as this undoubtedly helps us to cope (even though it does not feel like it at times.).

Well I had best start a bit of housework before hubby gets up and my baby grandson arrives for my stint babysitting (my daughter and her husband have a 'new' secondhand car to collect and my hubby is running them over to get it (we are being treated to fish and chip supper as well).

Sending virtual hugs for some better news for you and the family.  Jules xx

Thanks Jules, I am in the UK, sleeping is not coming too easily for me at the mo, I either can't sleep at night or wake up at stupid o clock in the morning! Well yesterday was the worst day ever, when I got to her at 2 she was crying with the pain so nurse arranged for a dr to come and see her. He turned up at 5 would you believe and he really wasn't that interested to be honest, he prescribed her 50 mg tramadol, she tried to explain she had taken that before and it hadn't worked but to no avail. Even the nurse( nurses have been lovely) told mum she thought he would prescribe 100mg, I think by the. Time I left at 8 she was so so tired  she said the pain might be easing slightly. I have stayed at hers last night as she lives about 30 mins if that from hospital while I am at least 2 hrs away!

I'm going to call the lung cancer nurses tomorrow as we are supposed to have the appt with the Consultant on Weds but as she is having 2nd bronchoscope on Tues I don't know if that will be rescheduled.

My non smoking is going really well, I have had no cravings at all just got to stop eating now! Work are being very good as I'm leaving early every day to visit and they are more than happy for me to do that. Being totally selfish I am missing my family, have hardly seen them recently, Xmas seems a very long time ago. Being even more selfish I am craving some time just for me, when I'm at home I'm in bed and then getting up to go to work but as I said that is me being selfish. I hope and pray she is feeling a bit better today. Thanks all for putting up with my moaning and take care.

Jacci xx

Hi Jacci

Its awful that they cannot get your poor Mum's pain under better control (my hubby is on the maximum dosage (daily slow release) of tramadol and sometimes he is now experiencing breakthrough discomfort (has been on this level of medication for just under 6months now) and they have already given him prescription to begin when these finish.  I think I would mention here though I have another friend (also terminal) who could never get on with tramadol and it took around 3 weeks to find something to totally control her pain.  It seems a bit of a lottery of luck and persistence.

This forum community will certainly recognise your utter frustration at what is happening to your Mum and you have no need to be sorry for letting all your feelings 'go' here.  You are definitely not selfish in feeling that you need that very precious commodity called 'me time'.  Even grabbing 10mins can help in restoring some of the emotional strength.You are spending so much of your energy in just seeing your Mum (worrying too when you are not with her) and its a real struggle to fit 'normal life' both with your own family (who will understand but it does not make it easier when dealing with that guilty feeling) and looking after  yourself too.

I am pleased  you have good employers which can be a real asset at times like this and hope that when you visit Mum today there will be some improvement in her comfort. Not sure if my next comment will be of any help but when my Dad was suffering with uncontrolled pain (in hospital) as we knew he loved listening to music, we took in cd player/headphones and he said it helped him relax (my friend also used this as a way of relaxing during various treatments).

Feel free to come and rant anytime you want - bottling up the emotional fallout is a big mistake (I learnt the hard way!!!).

The erratic sleep is something  many of those reading here will certainly recognise, me included. I have always been an early bird (6ish) but since hubby's diagnosis find I wake several times during the night and its hard getting back to sleep.  As I work part time I now find I just drop off at odd times of the afternoon or evening and am learning to go with it.  Thankfully I am on my feet when working otherwise I would worry about dropping off there at times!!

Take care and come and chat again.  Sending virtual hugs Jules xx

Thank you so much Jules, it helps so much being on here.Thank you for posting, I know things cannot be easy for you either.

Well, she seemed slightly more comfortable yesterday but said she is still in pain. Bless her she was sick twice whilst I was there, I wondered if it was the tramadol but she does have a sensitive stomach.I started feeling sick whilst I was there and have awful tummy cramps today so havent gone to work, dont know what it is, I do get IBS from time to time so possibly that...have taken some meds so will see how I go as I will feel awful if I cant see her tonight. I think my visits keep her going tbh.

I picked up her post for her and there were 2 letters from the hospital, one with the appt for 8th Jan which we knew about and another one sent the same day cancelling her appt on 14th Jan...Mum has never had an appt on 14th Jan! Honestly I know we are lucky to have the NHS but this hospital which is her local one and its a big University hospital, keep getting things wrong. At the moment 2nd bronchoscopy is still on for tomorrow so I will ring the lung cancer nurses today to make sure 8th Jan appt is still on.If results of first bronchoscopy were inconclusive which I assume they were I cant see the point in that appt really if they have no info to tell us.

She looked so so poorly yesterday and its now been going on for almost 4 months...cant believe it, it just doesnt seem right to me.

Anyway take care and speak soon.

Jacci xx

Me again, just spoken to one of the lung cancer nurses and as I thought bronchoscopy no 1 was inconclusive, no 2 which will happen tomorrow will hopefully give conclusive results. Mums appt on 8/1 has been cancelled. The letter regarding appt on 14/1 was an error and she will probably have an appt now on 15/1 so although its all delays again perhaps we are getting there now.

Take care all.

Jacci xx

Thanks for update Jacci and glad appointment situations have been clarified so you now know what is happening during the coming weeks.My  hubby's  next scheduled consultant appointment is during last week in Jan providing he feels able to cope until then.  If that goes ok then we are due to have a long weekend away (flooding permitting!) with friends in Bournemouth.Keeping everything crossed we can enjoy what is usually a great social weekend.

Take care and hope Mum more comfortable when you visit next. Jules xx

Hi Jules, wishing you a lovely weekend away when you go with no flooding!! Well its all change again, no bronchoscopy tomorrow, instead she is going to be sent to St Georges hospital in Tooting ( when they have a bed) for a test done under general anaesthetic. As I said we dont know when that will be yet.....there just doesnt seem to be any sense of urgency which I find peculiar to say the least. Would that be because of her age? I really dont know...she seemed more comfy tonight but said she was still in agony, she has had morphine today and was a bit high with it.....I found her quite exhausting tbh she didnt stop talking for a nano second but it was lovely to see her so much better than she was at the weekend.

Take care,

Jacci xx

Just had a voicemail from Mum, she is going into St Georges for test today and will hopefully be back in the original hospital tonight.

Jacci x

Just had a voicemail from Mum, she is going into St Georges for test today and will hopefully be back in the original hospital tonight.

Jacci x

Hi Jacci

Glad that the test is going ahead and do hope for all of you that this will give you some clue as to what is going on and lead to more appropriate treatment. Its certainly no easy task coping with work, family, travelling on top of the exhaustion that the worrying can cause.  Hope its not too long before she returned to her original hospital/ward and that she can be kept comfortable. Somehow if the pain is under control it seems somewhat easier to relax about things.

  You had the reverse today of what I have just experienced with my Mum with regards to 'chatter' (currently in a care home as unable to look after herself).  After the initial hello and did you bring an umbrella she clammed up and it was all one way traffic from then on. I was told after 40mins that I could leave (felt like I was a child again which is probably how she sees me still!!).

Take care of yourself.Jules xx

Hi jacci, I hope your ok will be keeping my fingers crossed for the test results xx

Hi Jules and Hope, would you believe test was cancelled yesterday but will be done today, I can only assume there has been no urgency because of Mums age and likely prognosis. Couldnt see her last night as she rang me too late for me to get to hospital....this one is about 3 hours away but will get there tonight. I slept very well last night though and feel much more like me today because of it. Still not a happy Jacci but a bit better IYKWIM.I am feeling very angry with life today but I suppose that is normal.

Take care,

Jacci x

Hi Jacci

I would be annoyed too if myMum was being messed around.  Apart from anything else you expect things to happen when  you are told and plan arrangements around that info!  Its not as if visiting is just round the corner for you. Hopefully she will be sorted out today (do wonder if sometimes they just cannot get the transportation between hospitals arranged but its no excuse when Mum'sis expecting to be looked after quite rightly so).

Pleased that you managed to catch up on much needed sleep and you are so right that it makes a difference in how you can cope. Will keep fingers crossed that the next news you get will be more promising.  Take care. Jules xx

Well Mum had the test done on Wednesday so results will be about 10/14 days and she has now been transferred back to her local hospital. She is in so much pain and keeps being sick and bless her had an enema today too..she told me tonight she would rather die now than be in this pain..honestly and I dont mean this to sound selfish or heartless, if the hospital rang me now to say she had had a fatal heart attack I would feel relief for my poor Mum. This is tearing her apart..I didnt think people had to be in pain these days...she has been like this now for well over a week, its cruel. I cant believe all this time has gone on and we still dont know what we are looking at, although we do have a fairly good idea....anyway I will stop rambling now and try to go to sleep.

Night all,take care,

jacci xx

Thinking and praying for you all x

Hi again Jacci

Have responded on your other thread but will hope you have a peaceful weekend.  I agree that in this day and age no one should be having to endure such pain and suffering and its very hard to be a 'watcher'.  Thinking of you all.Jules xx

Hi jacci

I'm so sorry to hear what your mum is still going

Through and how much pain she is in.

I hope they manage to find some way to make your

Mum more comfortable.

Hugs Hun and please keep us updated.

Hello, well today is another day, I took a travel sickness tablet last night to help me sleep which worked, almost too well as I am still in bed! How are you doing Sunshine and Jules I hope you and Hubby have a good weekend together.

Regarding Mum its the weekend now obviously so nothing new will be happening. She is type 1 diabetic (has 4 injections per day) and seems almost manic now regarding her sugar levels and is moaning non stop that the nurses on the ward know nothing about diabetes and that she has to manage her condition on her own in the state she is in with no help from them. Bless her she is not an easy patient! The morphine has affected her mood, such a shame it doesnt seem to be affecting the pain.I have always tried to live in the moment but cant stop myself thinking of the future, Im now thinking when we do get results she wont understand what they are talking about, she seems to be getting more deaf as well and if she is still in agony wont be able to sit still during her appointment but then I try and tell myself that she is certainly not the only person that has been in her position. Problem being this is the first time that she and I are going through all this. My journey was so different, my Consultant thought my tumour was benign until it was removed and when I got my diagnosis the tumour had gone and no further treatment was required so all totally different.

Hark at me rambling on again, take care ,

Jacci xx

Hi all, well yesterday was a better day, Mum said her pain wasnt as sharp as it has been, she is still vomiting on and off all day but she did look a little bit more like my mum yesterday. They did an xray yesterday, she thinks it was on her chest so results for that on Monday and I think they have changed her pain meds so will see if they help the pain and also make her not so sick,

Thank you all so much for your support, it helps so much.I have decided I need to put some normality back into my life if I can so had my nails done yesterday...baby steps....

Love to you all,

Jacci xx