Upsetting symptoms

Hi Jobo 

As you said this is the tumour and it’s not easy. My husband used to have something similar mid last year. He always thought my daughters and I were hiding things from him. He thought we had a separate WhatsApp chat group were we discussed things and we were not sharing it with him. He will often ask me what the girls are upto and what is it that I am hiding from him even though it was not the case. He used to get agitated and angry. There were times when he ended up shouting at my 12 year old when he saw her on her phone. Also whenever he got hold of my phone he will go through all text and WhatsApp messages to chk what I hv been talking/chatting with people. 
My husband didn’t want to speak to counsellor after the very first meeting in Nov 22. 
It is what it is and as you said they don’t remember doing all this after few minutes. 
sending you hugs. Take care of yourself. 
xx

Hi Jobo,

I can definitely relate to this. The paranoia can be very upsetting when you are pouring your heart and soul into caring for them and making them feel safe and loved. My partner goes through phases of accusing me of having an affair with my Ex, it comes and goes and you never know what's going to spark it off. I have recently had to figure out how to use sleep mode on my phone as it used to ping during the night as work emails come in from the US and I would never hear the end of it all night - even if I show her the phone. I have no idea how she can think I have the time or energy for an affair as my days are nothing but working from home and looking after her, the house and kids. I have spent the last 6 months trying to read a book - I'm lucky if I get through a page a day! 

I guess it's part and parcel of this horrible disease - she feels insecure and scared and out of control. Like you, I was supposed to travel to a company meeting for 2 days last week; I had it booked since before Christmas and have been agonizing for weeks over whether I could go. But it coincided with another burst of chemo and I cancelled in the end. I'm supposed to travel all the time with my job but I haven't been anywhere since last June.

In her case, she doesn't want to talk to anyone about this, but I keep encouraging her to as I'm a bit too much of a blunt tool to know how to handle these things. Please let us know if you find that talking to a counsellor helps your husband. Take care of yourself

Hiya Jobo 

Yes this is absolutely relatable. My dad would develop fixations where he just couldn’t think about anything else. He became convinced that the tree in the garden was going to fall down, that my mum was stealing money from him, that he was going to lose his job etc etc. he would be beside himself with paranoia and it was exacerbated enormously in his case by steroids.

Adjusting the steroids definitely took the edge off for him but for the most part he was definitely much more paranoid in general.

Grace xx  

Thank you, so sorry you're having similar issues. He does get sharp and snappy with our 12 year old too.  It's comforting to hear its part of the symptoms but so hard to come to terms with. He went out yesterday for a run and fell over but didn't tell me until 10pm when we were in bed when I saw his grazed knee! He didn't have his phone with him either. I think I'll need tp get him a keyring with my number on.  Lots of love to you too 

Hi yes that all sounds very familiar, it's almost like you get to grips with one symptom then another pops up!  I'm the exact same with my phone, I've silenced it and try not to be on it too much as it triggers those types of conversations.    I'm so sorry you're experiencing this too, one day at a time I guess. I'll let you know if the counselling helps x

Thanks Grace, hes gone from no steroids to 4mg so I'm thinking that's had an effect too. They recently moved to 3.5mg so I'm hoping they reduce them gradually and that helps.  It's such a rollercoaster just not having any idea what might be around the corner or what you need to deal with next. Hugs xx

Hi Jojo

yes my husband is experiencing similar. He swears we have other floors in our house and that there’s a lift and people are constantly coming and going. We live in a 4 bedroom detached house with just 2 floors and there is no lift. He often talks to me thinking I’m our eldest daughter.  He was diagnosed May 2023 and had radiotherapy and chemotherapy but then in August he had a set back and has seizures and is so fatigued. He recovered slightly but end of January this year he had a big seizure and was hospitalised again. He’s now home but in a hospital bed in our living room surrounded by various helping aids as his mobility is shot. He’s too weak to get up on his own and says he is a prisoner in his bed. He can get up with help and sit out in a chair and we have carers in 3 times a day.  I also work from home 3 days a week so find it so hard and tiring. He’s deteriorating very quickly and we don’t know  how long we have with him. Every day is a struggle as he forgets he can’t get up on his own and he has big plans on what he wants to do like spray painting the house and cabinets but he can’t stand upright for less than a minute. 

Hi Lolo so sorry you're going through this too.  It's so tough, it sounds like the paranoia is a common symptom , I guess depending on where the tumour is. My husband is the same, telling me he will sort the garden etc.  I've decided to stop having anyone in to do things like decorating, gardening etc as this just feeds his paranoia.  Sending lots of love and strength for the coming days and weeks. Xx