Hi
We had the scan results on Tuesday, they are so matter of fact when they deliver the news aren’t they!? Basically the tumour shows slight progression, after being on TMZ (2 x 6 month cycles) they have decided to change to lomoustin. It was a bit of a shock as no one had mentioned possibly changing it before. I guess it’s because the tmz isn’t working as effectively. So we had slight progression in January, then stable/shrunk in April and now in July slight progression. My husband is not in a good way emotionally. Physically he is well but his memory is shocking, he repeats everything many many times and is confused a lot of the time too (although he doesn’t think he is!). We are under the neuro psychologist and he has a private counsellor, neither of which are making much difference to be honest.
Yesterday we went to the Drs as his mood is so low, they prescribed anti depressants but I know he wont take them as in his words he’s just having a bad day. He does the same thing every day and most afternoons just sits on the sofa, not watching anything just staring into space. I am still booking things and arranging for us to go places but its getting increasingly difficult. He becomes fixated on things like dates and us going away. He really wants to go abroad, I have looked into it and although the insurance is ridiculous we could do it, I am very nervous though as he struggles with anything out of the norm, I’m thinking of booking a villa so its a bit calmer.
We are also going away for 4 days just us, he’s been going on for ages about it, again its difficult as its not a relaxing trip for me at all. I am trying to get him to do stuff with the kids but its almost impossible as he just wants me to be there all the time. He doesn’t understand that I need to also spend time with the kids and make sure they are ok. My youngest is just 13.
I am worried he is declining so I will do all the trips etc but I’m not sure he will remember them! But it is memories for the kids and me. He’s just a shell of himself and so unpredictable, it breaks my heart to see it and have to try and be functional. He veers between being overly affectionate, telling everyone I’m the best wife, how much he loves me to then accusing me of seeing other people and having an affair. Both are extreme emotions and hard to deal with.
I know it probably sounds dramatic but I feel like I am losing a bit of myself everyday, I feel so sad inside. At what we have lost and the fear of what’s to come. The summer holidays are nearly here and I have taken all of August off work, I already feel like I am pulled in all directions. If we wanted to go to London for example for a few days we couldn’t as a family as we don’t have anyone to have the dog but I know if I say I’ll take my son he won’t be happy with that either. Its already stressing me out!
Sending lots of love to everyone going through this xx
Hi Jobo
oh so much of what you've said resonates with me.
G was fixated with going on holiday throughout his journey. He was a workaholic and we never took family holidays so to start taking them at that point felt false. My daughter went away with him a couple of time throughout his journey. Their last trip was to a lodge just 15 miles from home for a couple of days and they went alpaca trekking. It totally stressed her out as he was quite unpredictable at that point.
I had a memorable 5 days in Paris with G in 2022 about 18months before he died and while it was a lovely city break it was beyond stressful for me. It was on that trip that I realised how childlike he was becoming at times. His attention span was zero and when we did a tour of the Eiffel tower, he didn't even attempt to listen to the guide and kept repeatedly asking me "can we go to the top now?"
It's important to try to make memories but there is a delicate balance to be sought as you want these memories to be good ones. Perhaps its time to be a bit selfish and tackle day trips/weekend breaks that you can cope with rather than always looking at it from your husband's perspective.
Sending love and light and hugs
Wee Me xx
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Despite doing this for a while now it's so hard to know what to say when it gets to this stage.
Good luck with the lomustine, I know some people have reported it being quite tough but others have found it no worse than the TMZ.
The making memories is particularly painful. Yes, we can try and make memories but I'm not sure I want these ones when you're poorly which means admitting that we already have all the best ones we'll ever have. But that doesn't mean we should stop living and trying our best. We did have some moments of happiness and laughing together but they were all tinged with some sadness as we all knew where everything was heading.
I found going away very stressful by this point. We had little day trips but J's mobility was very poor so trips abroad just weren't an option.
If you can, don't forget to try and get some time for yourself as well. Just a walk somewhere to try and find some space. I found day to life was so hard that when J's friends would visit I would pop out just to breathe and try somehow to process what was happening to our lives. And to have a little cry.
Sending love right back,
Chris
Thank you Chris, when I go out I often just park up and have a little cry 
it's so unpredictable and I don't want to feel like I've done it all wrong. Last night we met one of my husbands ex work colleagues and his wife. They're a lovely couple and he worked with my husband for 25 years. It was so lovely listening to them reminisce and it was so clear how much my husband was thought of at work. It was almost like we could have a night and forget what we're going through for a few hours. Until we got back to the hotel when I think the tiredness kicked in and his mood changed dramatically with him shouting and swearing at me telling me I was a dreadful wife, accusations again and generally just being awful to me. I literally just sat there reciting in my head over and over that it's the tumour not my husband.
I hope you and the kids are doing OK?
X
