Awake and up all night

Hi this is the first time posting on here. I was diagnosed with brain cancer 8 th August. I have a treatment plan that start 24 th Sept but I have had no sleep ! I have a stronge painkillers and a sleeping tablet i get from 10 until 1pm or 2pm then that me !! I was really strong steriods which they have increase again now this week,  they were  trying to cut me down in case they need to increase them during treatment they give me hot sweat and my blood sugar is a bit of an issue ..when all I want it choc !! Im 46 , its been fast /slow and everything  X 

Hi Gracie, and a warm welcome to our little thread, though I'm so sorry you find yourself here, we all have different cancers here and many different treatments, which often come with many side effects to contend with, and we remember also how difficult the early days were emotionally, the, tests, waiting for results, diagnosis, and waiting for treatments to start, it was awful, so my friend broken sleep is very familiar to many of us. But most of us find a way to manage a few hours, or return to normal sleep, I'm 3 1/2 years into my cancer journey, so I tried many things to find what worked for me, and starting treatment, and fighting back against this awful disease, is often a big help with sleep as it lessens your anxiety somewhat, as it's often your biggest obstacle to sleep as your brain doesn't want you to sleep when you're anxious , and learning to relax is so important. Gracie could I suggest you join the dedicated brain cancer forum and LWBC forum too, but you are always very welcome here my friend, and hope some of the wonderful people on here reply to you soon. My very best wishes for your upcoming treatment, I will have everything crossed for the very best possible outcome.

Eddie xx 

Hi Gracie16365c and welcome.

It’s sad to see another person join us, but I hope you’ll find the community helpful and supportive.

I’ll give you the link to the brain cancer forum which is the place to connect with others with the same cancer for support. You could join this group and put a post there to introduce yourself, get advice and share your feelings with others who will understand exactly what it’s like. 

Brain Cancer

The link which Eddie has provided is actually a link to a forum member who has called themselves Living with Brain cancer, so is not a forum and I cannot see that this member has made any posts or created a blog, so unfortunately it won’t give you further information.

This chat group here is a great place to come if you can’t sleep, and there are often people who are in the same boat who are around for a chat.  

Your diagnosis is recent, and it takes a bit of time to process the news, but I hope things go well when your treatment starts.

Sarah xx

Thank you Sarah, for explaining my mistake to Gracie, and how are you doing my friend, it's been a while since we talked and I hope your doing ok. XX

Hello Gracie, and welcome from me too.

I hope you're feeling a bit better now, or even getting some rest as the steroids are giving you a rough ride.  Please keep your team informed of your symptoms, but leave out the choc craving!

I'm usually around at daft o clock but forced myself to sleep, knowing we had an early-ish hospital appointment this morning.  But I'm back in the room, and any time you feel like chatting I'm up for it, regardless of the hour.

Good luck with the upcoming treatment my lovely. xxx

Hi Eddie

I asked the admin team to change that person’s user name as it can be confusing when someone has a name which is their illness. Anyway, so long as Gracie can find the support she needs, that’s the main thing.

I haven’t been on here as much recently but I’m not too bad thank you-counting the days till my appointment with the orthopaedic surgeon on Monday! The joys of an early morning trip to Doncaster…

And how are you doing, our most frequent traveller in the group?! I hope you’re continuing enjoying life and getting around the country with your friends, having many good times. I do notice that it’s mainly with the ladies  Hope you are doing ok in yourself. 

Sarah xx

Thanks again my friend, and Gracie, as you say, getting the best advice our group can offer is what matters most, and your always missed, when you're not posting Sarah, but understandable with such an important meeting coming up, for which I  offer my best wishes even more so with finding a parking space lol.

I'm so so my friend, we've just had another long weekend in Scotland with family and met a lovely friend from the forums, we're off to Glasgow for a couple of days at the end of the week, meeting 2 more lovely friends from the forum, it's just coincidence they're all ladies lol, and next Tuesday  Sheila's taking me on a cruise to Norway.

Had my MDT meeting recently, my PSA is  doubling every 8 weeks, bleeding is less frequent but heavier, energy levels are low, and pain is more intense and just about manageable, I've been referred to a specialist to see if I can tolerate anything other than paracetamol and I'm seeing my haematologist on Friday, to see about a change in bisphosphonates as the one's I was taking we're not only useless, but the cause of many of my recent issues.

Thoogh this might all change as the kids mum, who was recently told she's clear of ovarian cancer, has started bleeding, obviously we're hopeful of good news, if not, she becomes my priority.

love Eddie and Sheila xx 

Oh Eddie, I’m really sorry to read some of your news and sorry to hear about your kids’ mum. Another worry to deal with, but I know she’ll be first and foremost in all your thoughts. I know you have issues with any kind of pain relief, which must be incredibly difficult to deal with, so I will hope that the specialist can come up with a solution to help you.

I understand how debilitating it is to live with permanent pain, but I’ve been lucky enough to take things which make it a bit more manageable-it never goes but I’d say it’s better controlled for me now after probably about 7 or 8 years of it. we’ll see what the surgeon says on Monday…we get so many parking tickets at DRI because there’s just such a lack of spaces and even though  have a blue badge we can’t always get a disabled space. We’ve never paid the tickets -the nurses told us not to and had no action taken on any of them. 

We went to the cinema in Worksop on Saturday and got another parking ticket there! Couldn’t get a disabled space as they were all filled, so parked in a normal space displaying my valid badge and time clock. We were ticketed an hour after we arrived, so have appealed it. Bassetlaw never encourages you to come into town-that’s our 3rd ticket and we only go out to town once a year normally! 

Keep smiling Eddie and keep going.

Sarah xx

Awww thanks Sarah, but we're very hopeful Lesleys issues aren't to serious, and she's in good hands, and I've booked a refresher course for ACT and CBT therapy,  ahead of seeing the pain meds specialist.

That's great to hear my friend, that your on top of your pain management, and I'm assuming you're happy with your present regime, but  nothing stays the same for long, so will it be a big part of your appointment, I'm sure you know but the best places for parking are on Thorne Road, between gate 4 and the main bus stop, enoughfor10 cars with a blue badge, or if you go in gate 4 go through the car park, turn left, then just after the road turns to the right theirs about 20 disabled bays. You have to register, just the once, there's just inside the entrance to the women's hospital.

Well Sarah, I've had 2 parking tickets in Worksop this year, both times because one of my tyres was an inch over the bay line, one time the only thing on the other side of the line was a bush lol, you keep appealing my friend, but why do they make it so difficult to understand and victimise the disabled.

I hope the movie was worth it, and the ticket won't put you off going again.

love Eddie and Sheila xx 

Oh Sarah, That seems a lot of tickets! My husband had an appointment on Tuesday. He drove us there in my car and the idea was that if there were no spaces, I would drop him then park the car. There was a space almost at the front door, on double yellow lines, I asked him to pull in there. When I got out of the car he assumed I was going to take over the driving seat. I told him we were fine where we were and would park there. He just shrugged and said “well it’s your car, so your fine, OK”  When we returned to the car, the cars in front & behind us both had Parking Tickets but none on our car.

In Scotland, with a disabled badge displayed, you can park on double yellow lines, as long as you are not blocking anyone in etc. He didn’t believe it until I showed him on the info you get with your Blue Badge. Also we can park for however long we want because we are only given these clock things in case we are visiting England. They must drive you mad because you would be forever clock watching! Surely they can’t book you after only an hour!

Good luck on Monday, I’ll have everything crossed for you!