Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

Fingers crossed you get home tomorrow @KentishMama

Hello!

I'm so sorry we missed this in my bowel-related angst!

I'm not certain but I think it's routine - I had an MRI to check for any spread, when I was diagnosed in October
And I'm having another in January for the same
My oncologist said he didn't think there was any tumour in the brain but he wanted an MRI to rule it out

How are you feeling generally?

@KentishMama

Wishing you a....

I see oncologist on 4th @Fantasea so will look at a "maintenance" prescription- if things ever get moving
The suppository wasn't as bad as I expected but not a lot happened
And yes, the pain has made me cry, cry out, woken me up. Unbelievable

@Tilllly I got my Laxido and lactulose prescribed by the GP over the phone, I don't think you'll have any trouble getting what you need without having to wait until next week. I think the suppositories only work for the blockages lower down, hence the limited success which I've also had. The Laxido/Movicol works higher up and will take a day or two to work through. I need 3 sachets a day spaced out when it's bad like yours but it will work and then you'll feel loads better. Try and drink a lot of water as that will help too Xxx.

I'm sure GP will sort via email but have a generous supply which will last

Man, that stuff is rank
It makes me retch!

Got any Christmas choc to take the taste away?

@Tilly yes it is vile! I have the orange flavour one and it's revolting. I find chilling the water first before mixing in the powder makes it taste less awful. Several threads ago, we were all sharing strategies to take Laxido and one lady, I forget her name, devised the 'Laxido shot' where you mixed it in a tiny amount of water, knocked that back, then had a normal glass of water afterwards. I make mine with a half glass of water so I can drink it down in one go and I always stand over the kitchen sink just in case!

@Fantasea I was about to suggest the Laxido Shot technique. It worked well for me. Down in one! Ugh. You can take up to six at a time I believe.

I can think of better shots!!

Can you do that tho? It said it needed to be just water, and that amnt for it to bind together, but you could then add juice or something (gin?)

May add rest of prune juice, that's disgusting too

@Tilllly I didn't ever do the shot method but it worked for many of us on here. With the glass of water straight after, it must mix in your stomach I suppose. You can add some squash to flavour it but I think you'd still taste it. I have a glass of plain water standing by so have a gulp of that afterwards to wash the taste away. How are you feeling this morning and do you know when you'll be home?

I have a Colin the caterpillar chew standing by

I'm going in!!!

I am home already, sorry I didn't make that clear
Temp is at 38.1 so down a smidge and they're ringing me this morning to see how I am, so hope I don't have to go back in
I'm sure I'm better at home - hospitals are full of germs!!

Okay....
gone completely the other way now

🤦‍♀️

Oh @Tilllly, I hope you are okay.

I just popped in to say: I'm home! Yay!

Yippppppeeeeee

🥳 👏🏻😘🥂

Oh dear, this has happened to me too, it's so difficult to get the amount of Laxido right. I don't know what's worse actually and hope it settles down soon.

@KentishMama oh what good news!

Oh dear @Tilllly ! I hope you're more comfortable now, at least?

@KentishMama good to see you're home. Have they fixed the leak?

Today's dd2's birthday & oncology have both frustrated me, and done as I asked 🙄

What I thought was a telephone appointment turned out to be in person. Rang to change to phone call - no answer. Messaged BCN - no answer. Hurried call from stressed sounding man, last night - it's been changed. Phone call at 11am ish, as we're heading out - can you come in earlier? No but you can call whenever - it's meant to be a phone call. Ok...phone call half an hour later, all good - can we see you in person next time. Yep absolutely but it'll fall around 25th Jan which is a no go & needs to be 2:30 onwards so I can get there & not interfere with work - noted on system...appointment comes through - 9:55am, 25th Jan 🙄🤣 Ring to change it - poor oncologists secretary "I don't know why they keep putting my number down for appointment queries, you need this one" - puts me through. Cheery hold music like old style video game "hello..." she's put me through to herself 🙈

I'll try the number she gave me tomorrow & hopefully get it shifted!

@lucysmam
When it goes wrong, it goes really wrong!!
I laughed tho at her putting call thru to herself 🤣 will they sort it ok tomorrow you think?
Mine have been pretty good actually so far

Yes, am not in pain now which is SUCH a relief after last few days
Not taking anymore tonight tho, they said 2 sachets twice a day for 2 days, then 1 sachet twice a day. So shld have another 2 tonight but I'll hold off

Very interesting gurgling sounds and wriggles tho, it's like a theatre performance 🤣

Hi everyone, nice to hear some positive news, both on the blockages and home from hospital front.

I'm struggling a bit mentally and I can't work out why. I've been feeling low for a few days and it's not like me, I'm normally ridiculously optimistic and positive. Had my planning scan for radiotherapy today which was quite uncomfortable - had to lie on my back on a hard surface and I'm still swollen and sore from my surgery. Radio starts in 2 weeks time, and will be 10 or 15 daily sessions. Two days after the first radio I'll also have a meeting with the oncologist and I think that's what's worrying me. I've known for 6 weeks that the cancer's back, been through major back surgery (recovering well), have radio all planned, but still no idea of my prognosis and whether this is all worth it. I think deep down the worry is that the oncologist will tell me I've probably only got a few years when in my mind I'm thinking at least ten. Maybe this is just my head's way of preparing for bad news.

🤣 I laughed at theatre performance @Tilllly . I think I'd be holding off too!

Yeah I think they'll sort it - they're normally pretty competent tbf to them. The in person as opposed to phone call was my mistake for not reading properly when it came through - I presumed I'd been listened to...clearly not 🙄. I think the early booking on 25th is just crossed wires. We'll find out tomorrow I suppose...if the appointment admin people actually answer their phones!

@SewingBees
You know the oncologist is unlikely to tell you anything of the sort. They don't know - and neither do you

It's the uncertainty and ambiguity messing with your mind

Have you written down any and all questions and worries?
You need to make sure you're getting outside each day, and have some structure to your day

It's a crap time

Bad night
Here’s my little night nurse

Every night I don’t sleep well or am uncomfortable, he snuggles against me
It’s actually not entirely comfortable but I appreciate the sentiment

I'm sorry to hear you're struggling a bit @SewingBees. However it is only natural that your mind is trying to fill in the blanks and figure out what might happen in the next few appointments. It's impossible to predict though. I think writing down your questions, worries, etc is still there best approach here. If you have a good BCN or coordinator of some sort, you could send through your questions before the appointment to ensure they get covered.

I'm supposed to have an oncology appointment at the end of Jan to talk about Proton Beam radiation to my head. However I already know that I won't make a decision on it until I've got the three-month MRI results, and I'm minded to defer the whole thing anyway as it comes with a fairly high risk of temporal lobe necrosis. So I already know how that meeting will go. Oncologist pushing one way, me politely asking for another scan first... Bla bla. Annoying.

In more exciting news, I've slept for almost 11 hours.

My setup.