CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

BitOfFun love the shroud! And I am so pleased you enjoyed yourself. Did you have a massage or anything? I had a cancer-safe massage a while ago and it was utter bliss. I'm planning another :)

CY3PA4 is actually an enzyme that we produce, involved in metabolism. Different foods, medications etc. can interact with it, which can then ultimately increase or decrease the effects of the drug being metabolised. Presumably those foods and medications your friend lists contain CY3PA4-inhibitors or inducers.

If you need to avoid any foods then hopefully your medical team would have told you. But definitely don't take any herbal remedies or anything like that without clearing it with your oncologist.

I drink lots of lemon barley water at the moment. I go through phases of different things tasting weird. I was very angry when they changed the Ribena recipe

TQ :) I hope you're having a lovely time.

Pandora well done on getting through the MRI. And fingers crossed that the other chemo is gentler on you

LadyMaryC I'm glad you've got an appointment. Will your wife go with you?

noodles it's good you're managing the dog walks. It really helps to stay as active as possible. That's my one recommendation. I think I'm worse because I had a couple of illnesses where I couldn't exercise at all and then I've never managed to regain my fitness. So don't give it up unless you really, really have to :)

Mrstraveller I hope you can find another drink you like.

purple are you alright? You're quieter than usual. No need to post if you don't feel like it, of course

I've done my first lot of Powerbreathe exercises. Soon I shall be climbing mountains and running marathons, I'm sure

i’ve Had this anti depressant thing loads of times before but totally forgot about the grapefruit in the tonic. I know not to eat grapefruit or drink grapefruit juice but had a mental block about the grapefruit juice in the tonic! Will just go back to plain tonic water. Can anyone tell I am missing my G&T’s! Lemon barley water could be an option for me though.

Asked the chemo nurse about the pain in my arm and she said it’s due to the chemo irritating the vein. She said some patients massage comfrey oil into the arm so might get some of that. They sell it in Holland & Barrett.

Small irritation. I had bloods taken first thing this morning before I had the Herceptin, ready for chemo tomorrow and somehow they neglected to do a full blood count so the hospital called earlier and said could I go in tomorrow for 8.30am to the blood testing place to have it done again & then will have to wait for the results to see if they are ok before they can start the chemo.

Ha ha!!!! It's half term next week and I've got two days of chemo get to escape for 2 days.

The exciting thing that happened in our chemo suite today is the 25 year old pumps are being replaced by new better ones from an American company. Apparently they already have them in all the big centres like the Marsden, Christie etc and of course all American hospitals.

I was the first guinea pig. I now know what “back prime” means!

I find fresh pineapple or orange juice helps with the weird taste in my mouth, I've also got some bright green mouthwash from the chemo unit that seems to help too

I hope you're enjoying York TQ, I love it there and I think I know which shop you were in. I go in there every time as I love the smell of incense 

2 days of chemo Pandora  once every 3 weeks is more than enough for me. It's my 3rd lot on Monday as long as my bloods are ok

Ooh MrsT I'm very jealous of your new pumps. No idea what they look like but I'm guessing my hospital still uses the old ones as some of them are taped together with nurses tape to stop them dripping to bits

I'm still here Leslie  I do check in a couple of times a day to see how everyone else is doing but I'm feeling a bit bleugh at the minute. Plus there's not much happening here, I'm seeing my consultant tomorrow so hopefully he'll have some advice about my numb bum. I'm sure you'll be at the top of Everest in a few weeks 

Why aren't my smiley faces working?!

I'll send you a postcard purple sorry your bum is still numb. That must be unnerving. Good luck with the consultant.

Good afternoon lacies. Hope everyone is doing as well as they can be.
Just a quick question, how do I get a copy of my medical notes, in particular my copies of my mri scans?

I think you need to ask PALS ranout.

Simmi and KeepCalm good luck for tomorrow

I went to the hospice today for a massage. My nurse gave me a tour as well. It was really lovely there :)

Thanks @WhatWouldLeslieKnopeDo your massage sounds great, was it relaxing?

Yes, it really was :) I felt so relaxed afterwards.

Hi,

I hope everyone is having a good Wednesday.

I have been running around a fair bit today & am flagging now. I am also being a hideous patient for my parents as am very irritable as they just keep trying to do too much stuff for me. (A totally ridiculous moan I know!) They have been absolutely fantastic and have stayed etc during each chemo, for which I am very very grateful. I feel like a total bitch as I know they are only trying to help, but they have faffed around me so much, I just feel like I need some space. I think they will go home on Friday or Saturday, so normal service will be resumed soon. Am off for another dog walk in the meantime...

How have you got on with your numb bum purple is there anything recommended that can help alleviate it? Maybe a massage would do the trick?

I am glad the hospice looks lovely Lesley and the massage sounds fantastic too. Are you able to go there regularly for those?

Can your BC nurse get a copy of your notes ranout if no joy through PALS?

@WhatWouldLeslieKnopeDo Thank you, yes my wife knows about the scan and she will come with me. I haven't told her why the scan is so quick and she doesn't realise why. I just can't bare to tell her before Sunday as i hate to see her worried or upset. Come Sunday they'll either find something and she'll find out then or they won't find anything. If it's bad news I want her to have these last few days worry free.

She did notice last night that I've lost quite a bit of weight but as I didn't appear worried, neither did she. Have found I can eat soft foods so am sticking with them and haven't lost any more weight this week.

Contact your hospitals pals department for your notes. I don't know if you will be able to get copies of your mri scans for free. My hospital will only give them out with a payment or if another doctor ie at another hospital requests them they are put onto a disk for that doctor.

Having a good day today, in town heading to Aldi with my youngest two. Results of mri tomorrow.

Good luck for tomorrow Pandora. I'm glad you're feeling better and getting out and about

Just got back from seeing my consultant after being stuck in traffic for an hour. He found my numb bum quite amusing and hasn't had anyone else has ever it before  he said unless I was having a lot of back pain with it then its likely to be just a side effect from chemo and to see how it is in 3 weeks when I next see him

noodles my parents can be like that too, especially my mum! They want to help us, but it can be suffocating after a while. I hope your dog walk gave you a bit of a breather :) I can have six complementary therapy sessions (massage, or whatever else I fancy) then they will review. She said I can have more, but I don't want to take advantage!

LadyMaryC that's thoughtful of you. Could you maybe prepare her a little on the day that it might be something serious, so she isn't completely blind sided if it is? Hopefully it'll be something harmless

Pandora fingers crossed for your results. And great that you've been able to go shopping.

purple it's good that he's not worried :)

The hospital phoned earlier and cancelled my chemo. I've to go in to see the specialist consultant instead tomorrow afternoon.

I am now officially shitting myself. 

Keepcalm I know it's MUCH easier said than done but try not to panic, it could be a problem with your bloods not being quite right or they might want to increase/decrease the amount of chemo they're giving you 💐

KeepCalm I wish they'd think about how terrifying these last minute changes and unexpected appointments can be! Sending you a hand to squeeze until you know what's going on.

Hm, that sounds a bit Godfather-esque

I find any changes to the plans totally terrifying even though experience tells me that it’s generally for a really boring straight forward reason. So lots of for you KeepCalm

Can't believe I'm on here.

Just been diagnosed with Invasive Lobular Breast Cancer after finding a small lump on my nipple, which I thought was just a spot.

My DH didn't even come with me today because I honestly thought it was going to be negative results. No one's ever had breast cancer in my family, in fact no female member of the family has ever had cancer. Most of the male members have, but always smoking related and I don't smoke. I just cannot believe I've got cancer. I'm only 46.

The most likely treatment seems to be they'll just chop it out.

After being completely unworried, I've now gone the other extreme, and expecting further worse news after the MRI i.e it's spread further than they thought, it's in my lymph nodes or whatever.

They gave me this great wad of information, which tells me nothing, because all I want to know is what my prognosis is. Am I going to die in the next 6 months or can they get rid of it and I'll live into old age? But no one can answer that.

@purpleunicorns @WhatWouldLeslieKnopeDo thank you. I think it'll be the results of the genetics tests and scans as there is some talk of moving the chemo to Friday now. Luckily am shattered after no sleep last night so should manage to sleep tonight.

Hello @astuz welcome but sorry you have to be here too. We're all pretty much in varying states of disbelief/shock/acceptance/resignation. Hopefully being here will help you too 

@KeepCalm they really shouldn't have just called and said that. Like @WhatWouldLeslieKnopeDo says it could just be a rejig in your treatment. Let us know how you get on.
@astuz hello and sorry you are here. I was diagnosed end of July with breast cancer. I thought it was a pea sized lump but it's pretty big. Anyway as I say as long as there is a plan we're doing ok. This is the hardest time, the waiting, the what ifs but it does get easier once you know what's going on and they put a plan in place. I'm 42 and the first thing they mentioned to me was surgery but I've had 3 rounds of chemo so far, 3 to go then surgery and we'll see what then after. Have they given you a date for your next appointment?

astuz I'm sorry you're here. You sound like you're in complete shock, which is understandable do you know when you'll get the MRI results?