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
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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! That's so true, he keep telling me he's dying and wants to do these things so I feel incredibly guilty if I don't do the things he wants to do. We have booked a week abroad, it will be the last one abroad I think as its very stressful. He gets lost going to the loo in a cafe let alone in a foreign country so I'll have to keep a close eye on him!
It's just so tiring, it sounds very similar to G in terms of his physical health being OK but mentally very difficult.
Thank you for your lovely words xx
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
Hi Jobo …. D is set on going abroad too but I’m not sure I can do it … I’m so anxious about being abroad with him and our two boys (aged 11 and 12) … I keep putting him off but then feel mean as I know this is something he wants to do. After our stable scan results last week, I have booked the Liverpool stadium tour they all want to do but know the drive will be difficult as he gets agitated quickly with the boys … I just hope they can enjoy it and make some memories together. I absolutely resonate with you saying you feel like you are losing a bit of yourself every day … I went through a time recently where I felt the same … I’d lost my ‘sparkle’ and the joy inside me. I struggle to look at any past photos at the moment as they remind me of when we were carefree and the smiles in the pictures are real and genuine. I avoid photos at the moment as I feel that these are not the real ‘me’ and I feel so uncomfortable … I can’t explain it .. it’s just difficult. I’ve had to come off social media as everyone ‘living their best life’ and going on their holidays rips a hole in my heart .. I feel really selfish but I just can’t cope with it. In fact, it’s made me far more thoughtful about these things and how important just being together and sharing in any moments needs to be private … trying to enjoy the moment. I’m so sorry things are tough for you - sending you a hug … you are not alone x
Hi sunflower
I 100% get the social media thing, it all seems so false! I love taking photos, it's always been a standing joke that I'm constantly taking pictures. I print them out and put into albums. Now it's very different, I'm trying to capture things and the photos look lovely to the outside world but only I know what might have happened or been said on that day.
I have booked a week away, it's against my better judgement but let's see! Our eldest (my stepson) who is 25 is coming too so I don't feel like I'll have to manage entirely on my own and it will be good for my youngest to have him there and they can do things together. I'm already stressing about it but will do my best to enjoy it!
Sending lots of love x
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007