Why am I not enough?

Just try not to let it overwhelm you the steroids may work yet and I think you wont get him to eat if he dosent want to and no amount of coaxing will make any difference .He dosent want to leave you or upset you he just cant physically cope with it anymore .  Just spend time with him even if its having a cuddle and watching tv with him.This is a process that just happens Pam he may pick up or not a lot of the problem for the carer is accepting this. Thats why its vital to make time for yourself and if he is having a good day get him out somewhere . Has he got any friends who could come round to visit allowing you to go out for lunch or have a pamper session at a salon ? . You mention the palliative team are involved could he access day services at your local hospice .Bill goes once a week if he is well and he does him and me a power of good .You have been so kind to so many people on here let us help you dear Pam all the best xx 

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Thank you Granny Sue, his abdominal discomfort is bad today, but he won't admit that it's pain. He puts it down to constipation /diarrhoea, what he's eaten, what he hasn't eaten, the list goes on. He won't let me cuddle him, he won't go out anywhere. He did sit outside for a short while this morning. He has got friends and I think I will take your advice of getting out when they come. I look at him and can see him deteriorateing and I wish I had been better prepared. I feel because his last scan was clear that they won't offer him treatment. Now, with things as they are I don't think he will accept any chemo. I don't feel that I have been put in the picture. It seems as though everyone knew that things weren't going to out well bar me. 

I know that they can only tell us what they know for sure, but I feel I could have done with  fewer sympathetic looks and more information and a plan to help. We need plans and support whatever the future holds, and 3 monthly meetings don't provide it. Thank goodness for the palliative care team. Thankyou for listening and caring xxxx

Know exactly what you mean our last meeting with oncology was very frustrating his ct chest abdo thorax was clear the brain m.r.i hadnt changed but there was still something which he thought was scarring from the stereothatic radiotherapy but there was also a swollen ventricle in his brain but he didnt seem too bothered just referring it to the specialist Churchill Hospital . They will discuss it and we wont hear anything till  the next meeting in November ! .Meanwhile Bill has symptons that are like mild dementia and is sleeping a lot and not eating somedays .Other times he is up all night in the recliner chair . And they say thats normal and nothing to worry about .I just go along with it but have no faith in Docters now Bill finds the hospice helpful so thats something .Sometimes I wonder if the last lot of treatment did him much good he hasnt been right since . Well Pam take care keep posting we all support each other lots of hugs xx

Dear Pam,I really do feel for you and your partner.This is a horrible situation to be in and one that must be overwhelming for both of you, and being a carer is so tough at times.You are doing a fantastic job of supporting and caring so please don't feel useless.I have bladder cancer and am totally exhausted and struggling to eat.I can imagine that your partner is feeling so weak and tired that its affecting his ability to carry on fighting.It won't be anything to do with not loving or caring for you enough.Cancer does strange things to you mentally as well as physically and I think it's probably harder for loved ones in many ways.They are forced to go through the cancer experience too and its extremely stressful.I do wish I could help,sending you a big hug,you are a very kind and thoughtful person.Love Jane xxxxx

Thankyou Jane, and granny sue for your replies. Thank you for answering as a cancer sufferer Jane, you understand how perhaps he feels. I think I feel so vulnerable and stupid not knowing and being able to ask what is actually happening. Do you also feel that you are left in limbo at times? I am so sorry that you are so tired yourself and struggling to eat. I suppose I read how so many patients try so hard and take every horrible treatment to give them the best chance of cure and then my partner just won't try to eat. I think there was just a bit of self pity today that I just had to put into words, thankyou for thinking of me, please keep in touch, love Pam xxxx

Hi granny sue,, l totally agree with what you say. Whilst I know the doctors have a great deal of experience, I don't think they understand how difficult it is when you are the carer, living with the worry and responsibility 24 hours a day. I believe you have the right idea, go along with it and just take each day at a time. Your support is  very much appreciated xxx

My husband since his last immunotherapy treatment 9 months ago has definitely gone downhill. He came off this because of all the side effects. The treatment caused his cortisol hormone to stop working so is now permanently on steroids.  We were hoping that coming off treatments he would pick up a bit, but he hasn’t, no energy to do anything.  Like you he is showing signs of mild dementia. I try hard to motivate him to come out with me but he won’t. He has a permanent catheter and is painful every time he passes urine. No answers over the last couple of years why. Also the catheter has leaked,due to the inefficient lever being able to be pushed down and urine over our sofa and bed. I am forever changing bed, sheets quilt and mattress trying to clean. And my sofa is terrible as he sleeps on this some nights and the catheter lever has been pushed down in his sleep. His hygiene is very bad now and I find I can’t cope with all the cleaning etc now. 

Hi jaguar41, you must be exhausted. Is it possible that he has a urine infection or that the catheter needs changing? Perhaps a different type would be less likely to leak if it has a different lever.? I hope that you have the support you need, perhaps a chat with both your husband GP and your own to tell them how hard it is may help. Do you receive attendance allowance which could make things slightly easier? I am sure others will give you good suggestions, you shouldn't have to struggle on your own. Please reach out for that help xxxx

Being alongside is so tough and I read how difficult for you at the moment. Feeling helpless and being alongside is so difficult.  I try not to  underestimate the power of just being able to be there and not needing to do or say anything.  Thinking of you and whilst not really know what to say but my thoughts are with anyone who is struggling.