Reaching out for support

Hi, 

whoever said you were a pity party needs a slap. What a horrible insensitive thing to say. 

have you spoken to the doctors/nurses about the irrational behaviour? My Dad became irrational, forgetful and delirious at times and it turns out he’s harbouring a chest infection and a UTI. Two weeks of antibiotics later and he’s much more clear headed. He is getting into his late seventies tho so not sure if that happens at all ages. A sudden change in behaviour tho is definitely worth looking into if your husband can’t give you a reason or isn’t aware. 

it is blooming hard being a carer. It’s thankless and you get the sticky end of it all. 

much love x

Hi. I am sorry to hear that you had that horrible experience. My husband has kidney cancer, which has moved to his liver. He was diagnosed in March, and it has been really tough. What people don”t realise is that everyone in the family is suffering. Sleepless nights, exhaustion, emotional support for partner, children and friends. We are the ones that prioritise others over our own needs. Most people have been amazing, but I did have one comment that it was “awkward for them.” I had to laugh. If you can, try and have power naps, as these seem to help me cope better. Kind regards. 

Hi 

People can say the most unkind things. It is really hard to ignore them. I hope very much that you have someone who understands and can be there for you when you just need support. Sending you a virtual hug! 

Thank you for your lovely reply.  It is certainly very hard.  We went to the hospital to get him checked over.  We are awaiting a brain ct scan to check there is nothing abnormal in the brain.  Xx

I have had no support whatsoever.   So I thought reaching out would be good.  How wrong I was.  He started being ill last October.  His cancer was missed by so many health care professionals.  He was misdiagnosed as having IBS, then he was told he needed his gall bladder out.  Three weeks after that I was on the brink of losing him due to bile in his stomach and a blockage stopping it from going anywhere.  After 4 hours of surgery he had stage 3b bowel cancer.  He is now on the penultimate chemo cycle.  It's tougher with each cycle.  I've gone back to work a few hours a week.  I need that time away from home.  I felt guilty at first but I dont now.  Xx 

Thank you.  I felt your hug. X

I know what you mean about needing to have time away from home. You get to feel normal for a while. We are just about to start cycle 2, which means the chemo level is increased. My husband originally was on a higher dose, but couldn’t tolerate it. He also had to have his calcium levels reduced also. The side effects were horrible, he couldn't swallow, minimal saliva and therefore couldn’t sleep at all as he kept choking. We were told to go to A & E, as they were expecting us. Not so, there were 120 people waiting and a 4 hour wait. We came home. We have said to will do anything to not go to A & E again. I have found this forum really comforting over the past weeks. I don’t feel so lonely. Kind regards.

Sending another hug. Like Eviestar, I am speechless at the incomprehension and insensitivity of the person who said that. Especially as you have been doing so much on your own already. Try to not let it get to you and keep talking or venting here if it helps. And, I know it’s so easy to say and sometimes almost impossible to do, but grab any moment you can find to keep hold of ‘you’ in all this. And don’t feel guilty that you do! Best wishes x

Good luck with the scan, it’s a very stressful time for you and it’s so wearing. Hopefully they find a reason for his sudden change that is an easy fix such as dehydration or an infection. 

 Me and my brother are in the midst of it all too and we are faced relentlessly with new issues, it’s extremely stressful. Please remember you are doing your best and that’s all anyone can do. 

x

Couldn’t agree more about needing time just to be ‘you’ —My husband has stage 4 stomach cancer ( and given a few months to live by his oncologist) He only just survived 12 gruelling sessions of chemo which also changed his mood to being v critical of me) We are ‘grateful’ he has survived 7 months longer than expected with a fair quality of life Although the chemo was tough the staff in the unit were amazing and supportive— now he has finished his treatment there it feels like we have been’cast adrift to get on with it! He has almost continuous nausea and fatigue and can’t eat ( fed by tube) I feel I ve given up on ‘medical’ help/intervention and am helpless ( friends and neighbours have been great) but I do feel so guilty leaving him on his own Sending virtual hugs to ‘us’ all !