shell shocked

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

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.

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.

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.

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.

How awful for you both

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.

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?

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!

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.

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

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

It's very hard for you Teddy you are doing the best you can in very difficult circumstances. Whilst I understand your husband is scared and ill, he still needs to take responsibility for the way he is treating you. We do take things out on our nearest and dearest but there is a limit. Take time out when you need to and find someone to talk to about all this. Bon courage

The one thing that stands out to me....he now only wants to have a bath once every 3 weeks?! The dirty sod. Even once weekly is not enough! Has he got any mental illness at all? Seriously I mean. Otherwise - how the hell do you sleep with him, how do you live with him?!

If my husband became like that, he'd be out of the door.

I think you should contact your GP and ask for a carers assessment as a matter of urgency. You really do need some practical support. I would take as much time as you want to get a break. There are also forums that can offer help and advice - try Carers UK. Don't go it alone.

His behaviour is not normal. No one normal suggests bathjng every 3 wèks.I would do as last person suggested.

excuse mistakes. predictive text!

Just wanting to wish you both all the best. This must be so stressful for you both in quite differing ways.

I think Telly has a point...try other forums who might have more specific advice and help. Easier than trapesing up to the GP.

I will be thinking of you on Monday and Tuesday.

anep is right, his behaviour isn’t normal. His mental state will be affected by the medication he’s on and the strain of all he’s been through and is going through. My DF had lung cancer and it changed his personality and he did and said the weirdest things. His GP said he’d seen it before, the cancer “had got to his brain”. Not meaning it had spread there, but that it had changed the way he thought.
Morphine doesn’t help either!

You need support in order to support him. Your GP should be able to give you the contact details of local support groups to give you the respite you need.

Please, please, please, try to hold on to the happier times and know that you are doing the best you can in awful circumstances. This is almost certainly the illness and the medication talking. Also, keep an eye on urinary issues, they have an enormous impact on behaviour and certainly not in a good way!
We often hurt those we love most when we are hurting ourselves. I know when our daughter died, for about 48 hours I said the most terrible things and really acted badly towards my husband who was doing his best to stay strong. The only excuse I can find is that I was out of my mind with anger and grief. I expect he feels much the same.
Is there a way you can get someone to take care of him whilst you have 48 hours away? Sometimes just getting away from it for a very short time can make the situation more bearable.
My thoughts remain with you.
JustALaugh, I can only assume you are living up to your name which should be JustInappropriate.

Thank you all for the messages,it has given me a lift and things to think about.I asked at the local carers center and was invited to a meeting.It was all about what bank they were going to use as no longer a charity.A lady rang to ask if it had been helpful and I said,I didn't know any of the details discussed and it wasn't what I was looking for.She asked me if a counsellor might help,I have been 3 times,a very nice lady who just listens to my woes and it does help a bit.He had a blood test yesterday,then saw consultant, who said his blood results meant he could not have chemotherapy today.Dr said they will try again next week.
This morning he felt worse than he did last week ,when he was admitted for the week.He says he will give it till tomorrow and then ring the oncology center.
I think the business of not getting a bath,as he is such a clean man,was when he was trying to get control of things,he kept saying 'Money is leaching out of my account and no income now'.Heart,plus cancer,no income and getting rid of our vehicles and always, he has made it his mantra 'Try to save a few bob' Which often makes a misery of what you get ,because, it was never to be what you actually wanted.
I see the counsellor tomorrow.

Teddy, does he get attendance allowance and you, carers allowance? Do contact Macmillan for help.
You are doing so much to support him, wishing you all the best.

I think you are right icanhandthemback,I feel resentment in me because I cannot even remember the last time I was not at home overnight.This is nobody's fault,it is just how things are.It tends to make you shut down on the outer world, which is so bad as you get older.It seems as if you are on duty.
Neighbours on either side,moved,a couple went to a care setting that they had planned for five years.We were not close but very comfortable.The lady from the other side used to come most afternoons for a chat.Her partner of 30 years died 2 years ago and she thought change would help,as her bungalow was down a drive she never saw a person all day,she became desperate to move back to that village,as she knew everybody.We both have dogs and just chatting took some time up. She sometimes went with me to visit him in hospital.We phone each other quite a lot and remain good friends.
I feel such guilt, moaning,I think it's because of the uncertainty of the future. Thank you all again for your thoughts.

Teddy111 You are amazing! You are doing a wonderful job!
Please accept whatever help is available for you and for your husband.

No,I will ask about that at carer center tomorrow,thank you,loopyloo.