Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

Leslie you shouldn't have to be spending your time sorting out injections . Hope you have minimal hassle.

Well I chased up the copy letters. Was initially informed that there would be a charge but I pointed out that I am entitled to a copy and that other people I know get them sent automatically. They are now going to print them off but check with a GP first whether it is ok for me to have them as they were addressed to the GP and not me I should be able to get them this afternoon - had no call back from the BCN team yet. Why is everything such a palaver?

Morning Leslie. Sorted the appointment clash today, only to get another one on Thursday !
Got myself all geared up to get either my picc or port, however only got a vein assessment with ultrasound; procedure for Thursday, and that clashes with my morning dentist. I've had the dental hygienist clean but have a 2 hour slot for "emergency" dentist for actual check up. They're ringing me to see if they can do it Thursday afternoon between Dentist and flu jab early evening.
This cancer is a full time bloody job .

But.... it's awful that you're put under additional stress to get your injections. It shouldn't be anybody, nobody and somebody. You have enough to deal with without negotiating your own treatment.

Cancer Drug Funding

This may be a red herring but might this help ?

Chewing, under the Data Protection Act 1988 , they have to give you a copy. The only time this law does not apply is Tax, National Security etc. I am the person with named responsibility within my company and go on a course on it and last went in February, so my knowledge in this field is current at present.

Chewing... Chemo nurse said that she thought I'd be trouble amongst the chemo women as she thought I had a really naughty streak I have been labelled

Oh dear Tutti you'd better be on your best behaviour . It might be good to liven up the chemo room a bit though

BCN called me and I had a bit of a chat about my records and she read through my notes and has helped on a couple of points. Apparently I don't meet the criteria for having stereotactic radiotherapy which would be more effective than standard rads so I will be asking the onc exactly what the criteria is.

and im home from urology appointment

i have a HUGE 'something' in/on/around my left kidney - that kidney isnt functioning, its 10 times its normal size

2 more types scans to see if it has spread to my lungs

i did say i was gonna be pissy if ive had breast cancer and now get kidney cancer on top of it

seems they arent bothering with a biopsy and will just take it all out.

oh baubles bugger ,bugger ,bugger ! Did they say when they were going to do it ?

user hope PET scan is behind you now . I found it rather an intimidating ( and cold ) experience . But good for showing any spread .

Oh no baubles fuckety fuck. Do you have a date for the surgery? It sounds like your kidney is struggling so it's probably better to have it out, whatever the "something" is.

I hope it turns out to be something benign.

Do you have dates for the scans? What types are they? I'm sure between us on here we have had pretty much every type of scan, so if you have any questions ask away.

I'm sorry. This must be an enormous shock however prepared you think you are, it's still scary to hear the words

chewing I'm glad your nurse was helpful how silly about the letters. Mine are addressed to my GP too, but I'm copied in, as are various other medical people.

Tutti it does calm down a bit once treatment gets under way, but yes it does rather take over one's life. Have they said whether you'll be getting a port or PICC? I'm at a two hour dentist appointment! I hope it's not too horrid.

Thanks for the information, but thankfully my nurse has arranged a prescription which I can collect tomorrow

I hope everyone is alright this evening

alas no dates yet, another ct scan but of my lungs and a ultra sound of my kidney

they showed me my scans and kept banging on about how big it was, utterly perplexed as i had no pain or symptoms

lucky i guess i went for the pro-op reconstruction scan or it wouldnt have been found!!!

in the space of 24hrs ive gone from dreaming about having perky boobs once again to now crossing my fingers its 'just' my kidney and not spread to my lungs

many thanks to this thread, id be dumping thoughts/concerns on some poor sod in the tesco queue other wise

Hi, yes thank you I survived the pet scan.. agree it was cold but they gave me a blanket.
I found it mostly ok except in the last few minutes and I had a bit of a panic and cried..

Other than that I'm now waiting til Thursday.
I'm worried because I have pain in my chest/back/tops of arms. I guess this could be the tumour/lump on my chest on a nerve? It's scary.

I just want to know now what exactly is going to happen

I hope you get dates for those soon.

I had no symptoms when I was diagnosed either. Actually I felt healthier than I had for ages it's amazing how resilient and adaptable our bodies can be

Is there a possibility that it is a secondary from the breast cancer? Or do they think it's definitely a new thing?

Hopefully soon you'll have perky breasts and no misbehaving kidney

Sorry user I forgot to refresh before I posted so missed yours.

Well done for getting through the PET scan I had a blanket for mine. Partly for my modesty because they made me pull my trousers down to my knees! But she tucked me up very snugly.

Fingers crossed for you for Thursday it is horrible not knowing what's happening.

Is the pain bad? I hope it eases off soon.

Oh Fuck Baubles. Let's just keep everything crossed.

User. I hope they give you some reassurances and specific plan on Thursday.

Leslie I haven't got a 2 hour dentist treatment. I've just got to go for a check up, but they have no appointments, as two of the dentists are away on half term. I have to sit and wait for a cancellation.
They've ultrasounded my arm. I have one narrow vein on my good arm on the inside of my elbow, shitty position and I can see it getting in the way. They're going for PICC first (but they're likely to hit a nerve further up where it narrows) and if that fails, Port.
I asked if they could cut to the chase and just go for Port, but apparently they're worried as the good vein that they've found is too close to the lung, and they're worried about a puncture.
Really nice unit though and after talking it through have decided not to cold cap. Having the chop the night before the chemo...... Humpty Dumpty here I come

Feeling tired out and worn out at the minute and have a long drive to take DD to Uni interview tomorrow. So will be back late tomorrow night.

Hope all the Lacies have a good night and a good Wednesday.

he seems to think the kidney pre dates the breast cancer - he talked about T3 which went over my head at the time, i guess the ultra sound scan will see what else the 'mass' has consumed in that area...

the breast was most definitely breast cancer

the breast clinic has a much better approach - at my first appointment i was scanned and had a biopsy ...no waiting for appointments in the post!

That's frustrating Baubles, hopefully they'll act quickly and get you some answers.

Buggery bollocks baubles. I hope you get answers soon as the waiting is just awful.
User
Tutti good luck for dd tomorrow and good luck with the pudding basin
I collected the letters from the GP and they make interesting reading so I now have lots to ask the oncologist when I see him. I have found out that my tumour is of a certain type and a lot more aggressive than I thought. Through researching I've also discovered that there is a specialist team at a hospital nearby that are experts in the type of cancer I have - so why have I not been referred to them?

Good morning lacies.
Baubles what a shock especially as you were / are in no pain! I hope it is a benign mass and that they get the whole damn thing out.
user well done for getting through the PET scan. The wait for the report is tough but you will really want to know and get it over with. The pain you now have could be tension and nerves by the way or from lying still for the PET scan which can get your muscles aching.
Waving to the rest of our lovely lacies.

Morning. I've not slept well so will try to get some rest.
Sending best wishes to all.

Sorry you have not had a good night chewing. Probably preoccupied with all the information you have gathered.
I agree about asking your doctor about everything and especially why you were not referred to that specialist hospital since they deal with your type.

baubles fingers crossed for the scan. Hopefully it will be only your kidney affected.

I agree with royal I often end up with weird aches after scans, from lying very very still in a strange position on those rather uncomfortable beds, so your aches may be from that

chewing sorry you had a rough night. Can you rest today?

Ah Tutti that's better than a two hour appointment I suppose but sorry you'll be sitting around for a while. I hope your teeth are fine. I didn't have any sort of assessment before my port so I suppose I'm lucky they didn't puncture anything! I know I ramble on about it, but I reckon a PICC would be easier in many ways when it's for a short time so fingers crossed they can do it. Also less invasive than a port. I hope your daughter's interview goes well

I hope everyone is having a good day so far. I'm waiting for a call about my blood results so I know if I'm having chemo tomorrow :)

No I had the chest /shoulder/breast/underarm pain way before any tests . It was one of the few things that caused one of the doctors i saw to say he'd eat his hat if it was cancer as cancer doesn't hurt.. it's just another thing about this that scares me into thinking things are really bad.
Just 24 hours now until I see the oncologist.
Am trying to keep busy by revamping my little boy's bedroom as it's always been a bit of a dumping ground and he deserves his space to be nice.

Ah right user. Hopefully all will be explained tomorrow what time of day is your appointment? I hope it's early in so you aren't waiting too long.

Is your son at home today or is it going to be a surprise for him? I'm sure he will be very pleased :) it's good to have a distraction, but don't overdo it if your pain is bad

Appointment is 2pm. It will be a long morning!
Yes my little boy is with his sisters at my mums this week. Half term and we were supposed to be doing fun stuff everyday but sadly that went out the window.

user oh that will be a wonderful surprise when he gets home then! I'm sure they're having fun with your mum instead, but it's not fair that this has ruined your fun week with them. Hopefully you can plan some treats once all of this has calmed down