Cancer support thread 62 - here comes the sun (hopefully)

[WhatWouldLeslieKnopeDo]

Good evening

Our previous thread is here

If you've got cancer, this is the thread for you. Introduce yourself and feel free to ask any questions. We also welcome anyone who is waiting for cancer tests. We know how scary it can be. So don't be shy. We will happily hold your hand and hopefully wave goodbye when you get good news :)

purple I’ve had loads of people mention that to me - interested to see how you find it?

Thanks dulce I just hope I have the nerve next time and can actually get though the door to the chemo without running away...

Yes Leslie you are a legend - Yoy have really put up with so much sh** and I take my hat off to you! (not sure what the glitter ball is meant to signify but it felt appropriate)

Interesting about the cannabis oil - I'd heard it was great for chemo. Marijuana is becoming legal here in July - unfortunately slightly too late for my chemo. Did have someone offer to source me some - in a staff meeting slightly inappropriately! Haven't looked into sourcing the oil and medical marijuana legal but a rigmarole to get.

Pretty sure soppiness allowed on here Dulce ! Special dispensation.

I haven't tried CBD myself but am certainly considering it. I've put below some links that you may find interesting.

National Cancer Institute (US)
Macmillan page
UK online stockist
Cancer Research - the evidence so far

Interesting reading TQ, apparently it helps with neuropathy too so if nothing else I'm hoping it might help that as my hands keep going numb/tingly since I finished chemo.

Where about do you live Tayto?

Hope everyone's enjoying the weather 🌞 it's glorious here

purple we're in Canada but only been here a couple of years. UK before that.

Gorgeous weather here too :)

Dulce soppiness is allowed by special dispensation, as Tayto says. Just don't tell the vipers though we aren't particularly brave or positive - there's plenty of tears and swearing here too, when needed. Anything goes really. We're all just muddling along and doing the best we can as we don't have much choice in the matter :)

addle I love the glitterball!

purple I hope your neuropathy improves. It can take about six months, I think. Certainly a while after chemo finishes

I hope everyone's had a good weekend :)

Thinking of TQ, purple, chasegirl and anyone else with scans/appointments in the upcoming week.

That's good to know Leslie, I was panicking a bit that it's going to get worse and I'd have it forever luckily it's not too bad so I can still drive. I've just got back from the cinema, Deadpool 2 is fantastic if anyone's thinking of going

I've still got neuropathy, which they tell me is from last year's chemo, not the Caelyx I've been on since January. It doesn't bother me too much - pins and needles in feet and hands is all. I was offered medication for it last week, which I declined but if it's bad Purple maybe some meds would help you?

It's not too bad at the minute, although I'm a bit concerned that it only started a couple of weeks ago even though I finished chemo in February. I've googled and it is quite common after having cisplatin chemo. It's mainly when I'm in bed although it does happen if I sit still for too long. If it gets any worse I'll mention it to my consultant

Thanks for the links twitter. I do believe the cbd is helping with the sickness, whether or not it's also killing cancer cells I'll never know.
Leslie in my eyes you're a legend and that's that :)
Purple hope you feel better soon.
I still have tingling when touching something cold and it's definitely lasted longer this time. But I've had two ice lollies this weekend even with a tingling mouth.
Have a bronchoscopy tomorrow and feel a little anxious about it and what they may find. Then a 2 week wait for the results. That's the worst part for me!

purple I understand that this can happen in a delayed way but doesn’t mean it won’t go away. Drugs sound good to try anyway

What day of cycle are you on dulce? I was trying to remember when I managed an ice cream on my first cycle. I think it was almost at the 2 week mark! Maybe a day or two earlier?

I’m Day 5 and full on insomnia and tingles and nausea just slightly improving. This is a bit rubbish as I have a fun packed 4 year old day today and am totally exhausted! He is so lovely but doesn’t understand much at all so is being zombiefied by TV!

Ooh and good luck tomorrow dulce - surely you won’t remember the bronchoscopy??! Good old sedation

Adle I'm on day 7 today so exactly half way through the tablets. To be honest it was too soon for ice cream but I'm stubborn like that and wanted it so I went for it. Even if it wasn't as nice as it's meant to be.
Are you taking steroids? I found that they affect my sleep massively so for this and the last cycle I only took them in the morning for 3 days (was meant to take twice a day), and felt it made no difference on the nausea but I slept better. Might be worth you speaking to your consultant about it. They also told me you can ask for sleeping pills if the medication is keeping you awake. What day are you on?
Oh god I feel for you with a 4 year old! Luckily my dd is at school so I can sit on the sofa for the whole day. I feel like a lorry has ran over me and just want to sleep.
Thanks for the good wishes, I do hope you're right and I remember nothing about it.

purple I think any of the platinum based ones can cause neuropathy. I didn't realise it could come on so long after treatment though. Hope it eases. I made the mistake of paddling in the sea (6 degrees) this weekend - very tingly (to be fair probably wouldn't be pleasant without the neuropathy!).
Dulce good luck tomorrow.
Addle I only get steroids before my IV but have been taking sleeping tablets for first three days of cycle. Also good when I get the 2am cancer heebie jeebies.

Hm managed to lose my post this morning it wasn't particularly exciting.

purple you may have some permanent neuropathy but it does usually improve with time even if it doesn't fully disappear.

Dulce good luck tomorrow

addle I hope you managed to get some rest!

Waving to everyone

Forgot to say TQ I hope your scan goes smoothly tomorrow :)

Dulce waiting around is definitely the worst part of all this, not knowing makes your brain go into overdrive and you always end up imagining the worst possible outcome. Fingers crossed your results are ok

Good luck for tomorrow TQ

I got the CBT oil, it's tastes absolutely vile

Yes good luck TQ - wishing you minimal/no scanxiety (if such a thing is possible)

Slept a bit better last night thanks - feel very woolly headed today though!

Good luck today dulce - hopefully you’re on your way now and will be over and done with ASAP ...

Just had it and now need to sit in recovery for 2 hours. The most uncomfortable thing ever. My throat hurts like hell
Thank you for the messages.

Just got back from seeing my consultant, my cancer is starting to grow again. Pet scan in the morning to see if it's spread anywhere else then an examination under anaesthetic on Friday. Then a major operation to follow. Fuck

On purple that is shitty news. I'm so sorry. Where is cancer and what operation will you need?
Hope you have someone there to hold your hand

In my cervix at the minute but it's possibly spread to my hip. My husbands with me, my sons doing his GCSEs at the minute so I won't be telling anyone else until he's finished them

I get that. Protecting your son from any stress is the right thing to do. Do you know when surgery will be and what you'll have done? Glad husband is there. Mine's also outside waiting for me. Makes all the difference at times like that

Purple I am so, so sorry. It's absolute utter shit. Is it a laparoscopy on Friday? Handhold from me to you.

Oh bugger purple I'm really sorry. Good luck with your PET scan tomorrow. Sending you lots and lots of love

Dulce I hope you feel better soon. Do you get the results today or will you have to wait?

I'm off to the chemo unit shortly to get my bloods taken because of yet another district nurse admin cock up it's all very well as I can get there fairly easily, but it would be a nightmare if I was disabled or couldn't afford the transport/parking etc. To be honest lots of the people I meet at chemo don't seem to have a clue what's going on so probably wouldn't even know to chase up when the nurse didn't turn up. I wonder what happens to them