Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Adult Medulloblastoma diagnosis

limasierra
Posted by

I'm here! How are you?  

HeatherAP
Posted by

I'm not doing too bad thank you! :) how are you?

I wanted to ask, if you don't mind, at what point did you start to see clear scans after your treatment?

I have my first scan next week after finishing radiotherapy and I'm a bit nervous as always!

limasierra
Posted by

I'm OK, thanks! Scans still clear :) I believe real improvement showed at the beginning and it was clear by the 3rd and 4th.

Good luck!  you go girl, for getting through all that treatment. WELL DONE!! 

HeatherAP
Posted by

That's awesome to hear! You are such an inspiration! 

Here's hoping mine follow the same! I'm just finishing up my first cycle of chemo so it would be such a good boost if treatment was beginning to work it's magic already ^_^

limasierra
Posted by

That's so lovely of you  you're the heroine right now. Wishing you all the best! Chemo can be rough... 

limasierra
Posted by

Hi!

I'm still here, feeling fine. . Sorry for the delayed response. How ARE you?

Xxxxx

HeatherAP
Posted by

Hey lovely,

Was that meant to be a reply to my DM? Sorry just confused

I've been starting to feel the effects of chemo over the past week with nausea, lack of appetite and feeling soo tired! 

Hoping I'll be feeling better before the start of round 2 

Xxxx

limasierra
Posted by

Poor you....

Yes, it was a response to your DM; I get very confused so forgive me if I'd already replied!

I remember how the chemo felt..vile. Just remember it will pass. I'm now able to go to the gym for an hour every other day. 

Remember to care for yourself and give yourself nice things. I know it's hard when you're knackered!

Sending you lots of love and blessings for the next round...

xxxxxxxxxxx

HeatherAP
Posted by

Ah :) don't worry! I find myself getting confused these days too :D 

Yes, i definitely need to learn to be more patient with myself. I was so independent before all this and can easily get frustrated with myself when i want to spend all day in bed!

That's awesome you can go to the gym now! I really miss going swimming but have been told to avoid it whilst I'm on chemo. Going to be one of the first things I do once I've finished!

Thank you for your continued support, it means a lot to me

Lots of love right back at ya xxxx

HeatherAP
Posted by

Heya Lynette, how are you doing? I hope you're well

Just to say that i think i saw your story on the Maggie's facebook page! That was lovely to see!

Also the results of my scan last month came in as really good! My tumour has shrunk significantly! Just like you said yours did! I was so relieved and just wanted to share :) xxxxx

limasierra
Posted by

How fantastic!  what great news to wake up to and WELL DONE for getting through it so far! 

Yes, Maggie's randomly interviewed me last week on one of my visits. It's such a pleasure to big them up as they are amazing.

I hope you get to celebrate this fantastic milestone. Enjoy and may the next scan be even clearer xxx

HeatherAP
Posted by

Hey Lynette

How are you doing? I hope you're keeping well!

I just had a query regarding chemo. Did you ever find that it gave you aches? I have constant lower back ache and my limbs feel so heavy and am constantly exhausted now. I feel like I've avoided major fatigue up until now, but it seems to be hitting me hard now and I've only just completed cycle 2!

Please tell me this is normal haha

xxxx

limasierra
Posted by

Hi!

I've been busy all day so couldn't reply earlier. Yes, I had awful symptoms on chemo. I had back pain which made me worry I had a spreading spinal tumour. I was so exhausted and cancer fatigue is quite unique. You literally feel dead tired. I had to shuffle on my bum down the stairs as my legs felt so weak and I would often pass out in the middle of the day for hours, sleeping. I vomited a lot, too, but at least that meant I lost some steroid weight.! Steroids were a bit of a killer, too, when it came to aching limbs. 

I'm now going to the gym three times a week and am very active. I still get fatigued, but nowhere near as much. It is completely normal. A real pain. 

I hope it decreases soon, but just let your body do what it needs to do. Chemo is v strong stuff and your body needs to sleep to repair itself, too. Don't judge yourself. I used to get sooo frustrated! 

Wishing you the best as ever! Remember you're a hero! Xx

HeatherAP
Posted by

Thank you so much as always for taking the time to reply to me.

I am quite relieved I'm not the only one who has struggled with backache. I thought it was the steroids at first ruining my muscles, but these aches are carrying on long after I've finished them!

I think I've been a bit taken back by it recently really as the fatigue has just caught up with me all at once! And i get super frustrated with myself too, keep thinking i should be starting to feel better, not worse!

Thank you for putting my mind at ease 

HeatherAP
Posted by

Hey Lynette,

How are you doing? I hope that you're well

I am SO sorry to pester you with yet another query, our situations are just so similar and it super helps getting reassurance from you. Just tell me if you want some peace

I've developed some vertigo, only when my head is in certain positions, mostly when I'm lying down. It's made me very paranoid as dizziness and vertigo was one of my original symptoms. My doc is sending me for a scan in a couple of weeks.

I wanted to ask, did you ever get vertigo whilst on chemo? I'm hoping this is just a side effect and nothing sinister to worry about. 

Thank you as always