Feeling alone and scared

Hi glad you are using the group.

The waiting is the hardest bit, i have never had radiotherapy to the brain, though tomorrow I will find out.

I had a brain tumour tumour removed last September they did not know if from the lungs or a new primary, had a s can Dec and last Wednesday was informed. Some thing on scan they are not sure about. 

So another brain scan tomorrow and have to have a mask made, the hardest  part for me hospital is over 2 hours away.

I hope your wait is not to long in coming, this is a hard hard road we are all on.

Hi Ellie,

I hope it goes well tomorrow, the waiting is indeed the hardest part. I’m actually lucky to live near the hospital I’m treated at. I know people who travel in from a similar distance to you and that must add to how all consuming this disease is.

Nothing in the post again today about my treatment so I’ll try and focus on housework so it’s not a mess when my family arrive!

The other thing I’m finding hard is my husband is also very low since we found out about my brain mets. He’s usually the positive one but him being down makes me fearful too, not that I expect him to be positive all the time. It’s made me realise how much I usually appreciate his sense of humour, hopefully that will come back again xx 

Waiting is hard, but I'd chase up any appointments etc by phoning or emailing, I've had a couple of admissions and several appointments over the last few weeks (mainly unrelated to my cancer) but none of the letters arrived until after the appointments so I could have missed them if I hadn't chased them up. I hope you didn't do too much housework, it can be a good distraction, but your family are here to see you, not your house!

I do lots of puzzles and word games for distraction, I find it frustrating when I can't focus to read a book too. 

Hi again my friend, bloody cancer indeed, firstly your feelings are normal,  waking up with dark thoughts are not unusual and the waiting is  awful,  as is the uncertainty  surrounding the unknown. As Salis, has said, call your hospital or CNS, try and get things moving a little quicker, if it will help you ask them to talk you through your treatment, I wish I could help, but my radiotherapy was not to the brain, but it was very successful and im sure they wouldn't give you this treatment if they didn't think it would help. My thoughts are I'm not going to give in to cancer, and I'm going to make the most of what time I have left, which I know  is easier said than done, and my distractions are similar to yours, family and friends, reading/studying, walking and Poppy, crafts, baking/cooking and volunteering.

love Eddie xx 

Hi, i had radio to brain. It was not to bad, just was getting tired after a few and headache. To fit the mask has been a bit scary but it dosen't take long. 

I really wish I could give you a big hug. I've had a lot of sh!t to deal with in life and I've found that I need to feel the bad things in order to move past them. If I push them down they just keep coming back. It's normal to feel scared. This is all damn scary!! I have conversations with myself (mentally, out loud, on paper). "Okay, so chemo is scary but you don't know everything yet. On Monday you can talk to the oncologist, find out more and you can prepare. You've gotten through other procedures that scared you so you can do this" That kinda thing. Not distracting myself from the feelings but confronting them and talking them down. I hope that makes sense. If I do need distracting I play silly mobile games, TV, crochet/ knitting, reading, Tiki-cat, swapping stupid memes with a friend. Or being with people. Do you have a Maggies or similar near you? I live less than a mile from my hospital, so am lucky to be close to maggies and another similar place too. Sometimes a change of venue helps me.  

I couldn't read for a while after diagnosis, but am able to again. I hate how cancer takes things from us. Sometimes so unexpectedly and not what you'd expect. I try and focus on what I can still do rather than what I can't. Hard sometimes though. 

Others have said everything I could about chasing appts etc,  but yes. Chase things. Don't just sit and wait when it's been a while and you're struggling. 

Sending hugs and purrs (from tiki, not me!)

Lex

Hi everyone,

Thanks so much for all your lovely messages, you’ve no idea how much they help. Just hearing from people who know what this horrible disease is like helps enormously. Boxoffrogs, I wish we could have a hug too! I’ve asked my cancer nurse (who is excellent) to chase up radiotherapy as I still haven’t heard anything. I also have an appointment with my practice GP on Monday so I’ll get them on the case too if I haven’t heard anything by then. Salis, you are right you have to be your own advocate don’t you and I won’t rest till I hear something. Also, as the start to the year has been so bad I’m still expecting them to say they can’t do anything for me. My mind is telling me that if something can go wrong it probably will so the waiting game is torture. Hopefully I’ll hear something soon. On a happier note it was lovely seeing my family earlier this week. Cancer is horrendous but it does make me appreciate those I love. Hope everyone here has a good day and isn’t affected badly by Storm Éowyn! Clare xx

Morning Clare, it's good to hear things feel a little better, and your chasing up appointments, and I hope your GP can help as well. I'm glad you had a lovely time with your family and have to agree this awful disease does show you what's important in life, I hope you and Archie are keeping well and out of the storm, keeping warm and cosy.

Eddie xx 

My cancer liaison nurses are great, the oncology secretaries are pretty good too, though these days I seem to hear from someone different every time.

I hope every one is ok in the storm, my family in Scotland are without power, here in Sheffield it's just a bit breezy so far. My bird table has blown over! 

I really feel for you waiting for appointments, waiting for results, living with uncertainty. Unfortunately it’s the inevitable merry go round of being a cancer patient. Plus of course the worry when you receive a worsening diagnosis and need to step into the unknown on a new treatment pathway. I have been living with cancer for 3 years and definitely went through a stage of feeling like each development kicked a few more bricks out of my crumbling wall. My concentration is now ok but I remember well how the lockdown in 2020 removed my ability to read anything and led to too much doom scrolling. I generally find it easier when the weather improves, as it’s easier to be outside for longer - although that seems some way away. It’s ok to be scared and not feel strong.