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

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

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