shell shocked

You must be very, very hurt. He's a seriously ill man, obviously terrified of what the future holds and you have been there for him all the time. It's impossible to know how much of what he says is because of his health but whatever makes him say these things, it's terrible to hear them and his health doesn't excuse all of it. Do talk to McMillan nurses about it and maybe your own GP. Just pouring out your heart will help . You need time away from him ( you matter too, y'know ) and did the right thing to be on your own for a while. xx

Hi Teddy sorry things are so hard at present, agree with seacliffe you did best thing having a break ?

You are both on a very difficult journey at the minute. Please look after yourself and have breaks. Good advice re Macmillan nurses. keeping you in my thoughts.

The MacMillan nurses are there to help you as well as him. Talk to them. Does he have his own MacMillan nurse? My parents were supposed to have but it never materialised, but we could cope. It sounds as if you need respite!

Hi Teddy

Sorry to hear how he's been with you, so hurtful and difficult for you. You did absolutely the right thing in going out on your own and having a break, a little me time. It may make him think, he should be nicer to you.

I haven't read all the posts but just wanted to show my support for you. He is obviously going through an awful time, but then so are you, and he shouldn't be like this with you. Do you have anyone you can talk to honestly, in real life?

Oh dear. How painful that he's taking out all his frustration and pain on you. So unfair too. Is there anyone who could step in and give you a bit of a break? This really does sound so hard for you to stand.

How awful for you both

He endured 20 radiotherapy,plus 6 chemo,30 miles each way every day.On the last day,he had his radiotherapy, they took his blood and kept him in hospital.29/06/18,he was in for 6 nights.Discharged on 01/07/18,I went to pick him up,he has been so terribly awful since.When we got home I said,'Look at all the trees ,in the neighbours garden,aen't they beautiful,all so full of leaf,he said 'Yes,take a good look,it will be downhill from now on'.Meaning the autumn will come.It takes the pleasure out of the smallest thing.He said it will be a blessing to me not to have to cook him a proper meal ,as I never could cook and he can't eat a meal now.He said he doesn't know what has turned me into a horrible old hag.He said he should have shut my xxxx mouth 30 years ago.Yesterday I got the car keys and said ,'I won't be long',he jumped up and said you haven't asked me if I want to go anywhere.I said,'No,I haven't'.and walked out,I sat reading,in the car ,near the river,read a supermarket magazine.I haven't spoken since.I know all the things it could be and how resentful he must feel about everything but it is so very hard to take.He has to go to that hospital on Mon 09/07/18 for a blood test and then see consultant,then on the Tues a full day of chemotherapy. I know now that I never appreciated the true meaning of the word vulnerable.

Thank you so much for your reply.I will ask about a care co-ordinator when we go back,it does sound like a good idea. He has faith in the doctors and I don't say anything negative about them at all.
He didn't sleep well last night and went up to bed 2 hrs ago.I just sit quietly, as I would hate to wake him.He wouldn't be cross but when someone is so ill and is fighting so hard to live it would be horrible.

Ah, that good old NHS "All change without explanation" system which leaves you discombobulated at a time when you need to feel secure in the treatment you are about to undertake. Do you have a single point of contact who can explain these sorts of things to you? I am sure MIL had a co-ordinator who was allocated to her but can't really remember.
It might be worth asking the MacMillan nurses if there is anything to counter the breathlessness. I know some people use a vaporiser to assist their breathing as the gentle steam helps.
It is lovely that your DH is being so brave and it sounds like you are too but I hope you have people around you who can give you solace when it gets too much. We are always here but it isn't quite the same as having somebody who knows you well who can comfort you.
Have as good a weekend away as you can in the circumstances. I don't normally like to wish time to hurry by but in your case, I hope the next couple of months go by swiftly so you can start to see light at the end of a very long tunnel.

Hello,Thank you for kind enquiry.On and on and on.He has managed his morphine wonderfully well.He keeps to the smallest dose that he is comfortable with.We saw cardiologist,6 weeks after the operation,he said all fine,next week we saw the surgeon, who had done the operation,he said maybe a few cells needed treating and he was to go for 4 chemo treatments,one a week to the local hospital.We went the next week and he went in,thinking he was going to have chemo.A different consultant said 'Oh,thats not for you,you will have to go to have 20 radiotherapy treatments,5 a week, and chemo ,three treatments ,a week , for two weeks, as well. I was sitting in the car,on double red lines,waiting to see if he would be a couple of hours or would it be all day.
I saw him walking towards the car and he said,'There is a bit of a problem'. No tests had been done to indicate the change of plans,we were totoally shocked.The consultant had said he will experience burning to his oesophagus and will get much more out of breath.He had urgent appt for MRI ,next day,30 miles away.They arranged transport.I rang McMillan,we have 3 cards,all away for w/e,Friday lunch.
He brought a printed plan of dates,times etc,when he came home. He has to go for pre-assessment talk,08.30 21/05/18.Then commence treatment 29/05/18 for 20 days.

He said the only thing that frightens him is being more breathless than he is now.I tried to say that they will be monitoring him carefully and if they take his breath away,they will have to give medication and oxygen to help him.He has been so incredibly brave,I had to leave the room when he took a little dose of cider vinegar that he thinks ,helps him.

Teddy111, how are things? I am hoping your silence is good news rather than you feeling overwhelmed.

Teddy111, when my Grandad was struggling to eat, the Dr prescribed him some drinks so that he was getting the most nutrition from the smallest amount. I found that I could get him to drink a vanilla one with a spoonful of coffee instead of normal coffee which helped enormously. Lactulose is good for constipation and seems to work quite gently. I hope he starts to feel better soon and I hope your needs are being addressed too. x

loopyloo,he is taking paracetamol,the consultant had told him to use it.Thank you.

Thank you,so much for your time and kind wishes,it does help.

Dear Teddy , is he taking paracetamol regularly ? Because that might help with morphine as a top up if necessary. I would try to contact a symptom control nurse if possible.
Wishing you all the best.

Oh dear Teddy I have been reading your posts and you have been on a roller coaster Your poor husband has so many different things going on at the same time that it’s hard to combat one without compromising another
I just wanted to add my thoughts and good wishes and let you know we are all here rooting for you and your husband
?

Thank you,all of you.Just needed to grumble.Over myself now.Got some lovely sweet little pears,lots of soft prunes,easy peelers and Movicol,Senna tabs and ask him every day,if he's o.k.I told him how important it is,not to have to strain.I bought some suppositories and put in the drawer near the bed and told him to use them if necessary.The trouble with morphine is,enough to prevent breakthrough pain and to keep it to a manageble level and he seems to have worked it out very well.Saw Gp who adjusted dose and he is not on a big dose.Have appt with consultant in 3 weeks.3 specialist nurses gave us their cards,rang one,on holiday,next ,off for three days.Left a message for the last one,she phoned back 2 days later and suggested GP,that's what we did.It is sometimes difficult to remain positive and hard not to sound jolly hockey sticks,as if you are making nothing of the pains he describes.

When I was given opiates after my knee replacement I completely lost my appetite. I tried to eat because I knew I had to but was very sick. Sleep was a problem too. Could only manage it in short bursts. His appetite loss could easily be due to the meds.
You poor thing are having a difficult time too. You're doing a great job looking after him. Don't forget to look after yourself!

Ensure or Complan are useful in this situation. But perhaps not great with the constipation, which does need treating.

Morphine can make you feel queasy., Teddy111. And constipated. Do you have a followup appt soon? Or have you seen the GP recently?
Thinking of you and wishing you all the best.

Teddy firstly I’m so sorry that you are both having to deal with this. I think that the Morphine might be stopping your husband from feeling hungry.

My DF spent a lot of time sitting in his chair when he was sick, with my DM trying to tempt him with tasty food and I did the same with her when she was ill.

When my DM was ill, I asked her to speak to her doctor and give her permission for the Dr. to speak to me in private if necessary, it was far easier for me to ask the Dr. questions Without my Mum sitting there. I was able to discuss various treatment options etc.

I hope all goes well for you both.

Apologies for the typos. Watching Commonwealth games and cooking. Too much multitasking!

I wish I knew what to say. sometimes illpeople can be tempted to eat by smell of food. Sometimes the smell of food can make things worse. Tinned soup is not appealing. How about some thin homemade soup with chicken or beef stock and a little puréed veg to taste. Good stock in jars tho expensive. Soft boiled egg and toast soldiers. Home made gravy with buttery mashed potatoes. What about a little classical music or piano music. Noise may or may not be irritating. Do look after yourself too, scented bath, mindless film. Do ask the surgery to visit if possible if it is easier than going there. Perhaps there is a surgery nurse who can give good advice. I just wanted you to know I had read your post and feel for you both.

I came downstairs this morning and sat in the front room,in the dark,I didn't open the curtains or get my slippers off the radiator.Not even got a cup of tea.
I know how poorly he feels and tiptoe about so that I don't wake him. He went back to bed at nine o'clock ,still there.He had been up twice in the night,two hours each time.Says he feels better just sitting on a kitchen chair. He says the morphine controls the pain but he jerks awake in the night feeling breathless.It must be so frightening.I had been shopping for food yesterday and he said,all he is having for tea every night is a tin of soup. I had bought him some smoked haddock,(too salty),free range chicken,(don't want that) ,I suggested scrambled eggs on toast(huh),cheese,beans,tomatoes,(huh).Would he like a slice of the brown loaf,his favourite, that I had got from Lidl,I had waited for it and it was still warm,(no,I can't eat anything else now I've had soup). I bought some icecream as sometimes it helps if you feel a bit queasy,(No,I don't want that).
It is three weeks since op.I am just having a moan and feel so guilty.He must be so frightened that he is not getting any better.