Can't sleep

Hi Coolcat, I don’t sleep well because of pain but rather than lie thinking about it too much, I do jigsaws online. They give you a free one daily and a free weekly pack with about 10 or 20 in it. It keeps my mind busy. Then I do some word games etc before checking the Macsite to see if anyone else is awake. I have been a Night Owl for many years now, so I’m used to it.

The thing about treatment is no one knows if it is going to work or how long it will give you. You said about only extending your life for a few months and it is not worth it. I was told a Trial Drug may extend my life for about 6 months, if I was lucky. I thought about it and decided that in 6 months time they may have another new drug that could help, so I went for it. That was in 2014! So never say never. There is always hope. Do you do jigsaws or read? Anything is better than letting your mind run riot!!

Hi Annette,

Thank you for your reply. I do do word games online. They help pass the time. I'll check out the jigsaws.

Thank you for the suggestion.

I'll take a look now. 

I am sorry you find yourself here and fully understand your priority. The problem with deciding about a treatment is that they might also manage symptoms (and therefore improve quality of life) as well as bring side effects of their own. Sometimes you don’t know until you try. On the other hand the oncology team generally want you to try something else. I hope you can find a balance. 

anndanv said:

the Macsite

Haha I've never heard it called that before!!!  

Sorry I'm only seeing this the night after. I understand being terrified of the side-effects. I'm still fairly new to this but it seems like a balance.... Treatment reduces my bone pain but causes other issues. If the benefit doesn't outweigh the side-effects I'd stop it personally. But it's such an individual, personal decision. 

I hope you're sleeping better tonight. I listen to podcasts when I can't sleep, the trick is to find something interesting enough to distract but not so interesting it keeps me awake. Currently that's a silly comedy fantasy called "Attention HellMart Shoppers". 

I've just come out of a 48-hour emotional collapse. These times of great upset, they pass. Hopefully leaving you to enjoy times with family. 

Lex - xx

Hi Lex,

Thank you for your reply,

I'll take a look at the comedy. I could do with a bit of a laugh.

Hope you continue to feel ok. 

Best wishes to you.

Hi Mmum, I have always called it that as “McMillan Community Forum” is a bit long winded, so Mac…..McMillan.   Site…..Online!     Simples!! LOL! Hope you are doing ok! 

Hi, Just wondering if you found the jigsaw app. The logo looks like a piece of jigsaw and when you open it it says JIGSAW Collection HD, They give you so many free ones, I’ve never bought any. However after a month or so I paid to have the adverts removed. At that time it was £4.99 (I don’t know the current price) and you can use it on different devices.

I hope you don’t need it and are now fast asleep though! As Lex says, the Podcasts can be good too!

Hi anndanv,

Thank you for the jig saw suggestion. They have helped keep me occupied for an hour or so these past couple of nights. 

I hope you are pain free and have managed to get some sleep. 

Much love 

Hi Coolcat, Glad to hear the jigsaws helped but sorry to hear you are not asleep yet! I think the jigsaws are good because IF you feel you are going to sleep, all you do is save it and finish it next time!

To be honest I don’t sleep much. I have been referred to the Pain Management Team and I actually got a letter yesterday about what to expect etc. I have to make 2 appointments that are for giving information about how they work. I did expect it to take a lot longer to hear from them, so that is great I’ve heard from them already!