Crack open the wine... it's CANCER SUPPORT THREAD 61!

[WhatWouldLeslieKnopeDo]

Some of us have been here a while and others have only just joined. If you're lurking, feel free to say hello. We are quite friendly really.

You are welcome to join us, whatever sort of cancer you have, or if you're waiting for tests to find out whether you have cancer or not (we hope not!)

Our previous thread is here. Do check it out if you're new as there's lots of useful information in the first few posts.

Best wishes to everyone who finds themselves here

Sorry too hear you aren't well Leslie hope you feel better soon.

As I seem to be likely to get the all clear from all my cancer checks soon I will leave the thread now but I wish you all well and if anyone just wants/needs to chat about being ill / random Australian animals please PM me. Thanks for letting me chat, its been lovely.

Sorry I cross-posted with you penguins! I have photos from mine too. Very attractive hopefully all will be explained at your follow-up.

I don't like water either and struggle to find things to drink that don't taste funny with chemo-mouth. Especially now they've changed all the squash recipes to use artificial sweetener I am drinking lots of Belvoir blackcurrant cordial at the moment, which is nicely refreshing and, whilst fruity, not as acidic as citrus. People always rave about cucumber water, but I'm not convinced.

Sorry you're still feeling rough. I hope the sick day helps. And making nice plans with your friend :) it's good you've got that to look forward to.

I'm really pleased you don't seem to have cancer, especially after so long waiting. But I hope you get a proper diagnosis soon so you can start to feel better

I think you might be right re stress. DD has just had a lifelong epilepsy diagnosis so it's been quite a shitty week really!

shitty week indeed Mrspotter! It would be a miracle if you weren't stressed.

It's nice to see someone leave Penguins (in the best possible way) hopefully we don't see you again. I hope the slug is nothing to worry about, and good luck with the last of your tests

Take care Penguins xx

Thanks everyone.

Delurking to wave goodbye to penguins. Take care of yourself

Thanks Wombat Take care of youself too. I wish I knew of a cure for you and Leslie and the others on here with the incurable cancer, so sorry for what you are all going through. If there's anything I can do to help please let me know.

Farewell, penguins!

I’m snuggled up with a hot water bottle and a sore hip. Three weeks to results of this latest bone marrow aspiration. I feel catastrophically tired, but not managing to nap.

I can’t double up pain killers, because I’m not allowed NSAIDs or aspirin. So I’m on max dose of paracetamol/codeine, and wondering if I should ask for 24-48 hours worth of a stronger opiate next time around - what’s the ‘entry level’ of prescribed ones?

On the brighter side, I’ve had my hair done. But no-one noticed!

iVampire I hope the pain wears off soon, and fingers crossed for the results I'd definitely ask for some tramadol next time, or even Oramorph. There's no point suffering unnecessarily.

I think I'm going to have to get some stronger asthma medications as I'm still breathless, but I managed a little stroll and pub lunch earlier :)

Mmmm .... pub lunch Leslie!

Ivampire ask about morphine, I'm on low dose slow release and take 2 tablets twice a day, they take a couple of days to get in your system but they really do help. Mines on repeat prescription and I've also got oramorph to top up when needed

Ooh iVampire - your hair looks lovely. If it wasn't for your sore hip, I'd ask you to give us a twirl . On a serious note, 3 weeks wait is total pants (gentle hugs)

Leslie the pub lunch sounds lovely. I hope you get the breathlessness sorted soon

Hello again. It seems there has been good news and bad news since I was here last, Penguins, great news, I hope we don't cross paths again (you know what I mean), iVamp, what an awful week you are having, my heart goes out to you and your daughter.

Ducks have you had your results yet? Twitter where are you?

I had my meeting and got my plan, I start 6 rounds of chemo on Monday. I was shocked as it was different than what I was told previously. Apparently the tumour is too large for radiotherapy. It seems every time I see a specialist the news is worse. I was also told several lymph nodes are involved whilst previously I was told not to worry about this. I asked if I was going to die from this and she didn't say no. I still hope they are wrong as my case is so unusual they just don't know.

They also said I will loose my hair in 3 weeks so I spent a strange afternoon buying wigs with my best mate. They are rather splendid and much better than my own hair. I'm getting it chopped tomorrow so that its loss won't be so traumatic.

So that's my news, I feel it belongs to someone else, I look in the mirror and look good, better than ages as I've lost 1/2 a stone, I can't believe this thing is eating my insides. However realistically I can feel it, my bathroom issues are getting worse and I now walk with a limp. My foot and bum are totally numb!

Any tips for chemo? It will be six hours. What should I take and how might I be the following few days?

I'm here Swaying, lurking. I have chemo on Thursdays - shame we can't coordinate. When do you begin? I'm in on Monday for a consultant's appt.

Tips:
Kindle or similar. You can spend hours on MN without any guilt at all! And download some books beforehand.

Ahem - embarrassment alert - They put so much fluid into me with last year's chemo, which necessitated quite a few trips to the loo. I ignored my bladder the 1st couple of times and managed to wet my knickers because it took me too long to unplug my drip, sort the wires out, trundle down the corridor etc... I wore pads after that!

You'll be offered lunch but I take my own sandwiches now and just have the fruit, yoghurt and crisps (if you're lucky). Take something to drink. There's a tea and coffee run but there's nothing worse than being desperate for a drink and not having one.

Expect to have a nap or two - everyone else does.

Take a big scarf or shawl. I hate my neck getting cold and I find them quite comforting.

What chemo drugs are you on? the effects vary so much from person to person. I found the first couple of days are fine for me. Except the steroids screw up your sleep - I generally wake up around 3 or 4 am for a couple of days. Days 4 & 5 were worst for me, just zombie-like and not up to much, not really sicky - and they'll give you drugs for that anyway. The very 1st chemo I had was by far the worst. It felt like awful flu for a week - it was never as bad after that 1st time.

Ask me anything!

Swaying do you know what chemo drugs you're having? The side effects vary quite a bit, though things like fatigue, nausea, "chemo brain" are fairly standard. Personally I always feel alright for the first few days post-chemo then about day 5/6 I feel worst.

Firstly be prepared for it to take longer than six hours the first time! My longest day at the chemo unit was about twelve. The first time they do everything extra slowly to check you don't have a reaction.

I get very fidgety, but I also find it hard to concentrate much so I take lots of easy distractions. I have a big bag with all my chemo bits and bobs in. My top recommendation is one of those little handheld battery fans. I get really hot after one of my infusions and the hospital is always warm anyway. Take some nice snacks.

This is everything that I take in my chemo bag at the moment...

Puzzle book
Pen
Crochet
iPad and charger (I have audiobooks and I usually download a couple of episodes of something from Netflix)
Headphones (absolutely essential in case you get stuck next to someone annoying!)
Handcream
Lip balm
Comfy socks (some people take slippers but I don't like to wear them to the loo!)
Aforementioned fan
Tissues
Sweets
Ribena (I get bored of drinking water all day)

Also before you lose all of your hair I'd recommend getting a little hat to wear at night. I was absolutely freezing without hair.

I got some from Anna Bandana but there are lots of different websites selling them.

Waving to everyone else. I hope you have a good day :)

How are you Leslie? Has your chest settled down at all?

A bit thanks TQ but still more breathless than usual. I've just been googling hayfever tablets and I'm going to go to the pharmacy later. Exciting

How are you?

Today I am panicking.... big family get together on Sunday (I'm contributing key lime pie), but family from afar have booked hotel rooms near me for Saturday night so I've said come round for a supper. What to cook for 12? Young boys involved, plus adults, all arriving at different times. I'm thinking mini chicken pies and chocolate refrigerator cake? DDs useless! They say "tell me what to do" and then say they don't like my choice of food! Aagh! Any suggestions welcome.

Otherwise I'm good tx. Ulcers have appeared and I'm increasingly tired, but not the kind of tired that is cured by sleep - which everyone here will understand but my family and friends don't. I sit around a lot but I'm very thankful that I have no pain.

You could post in the Food/recipes section. There are some brilliant posters who have menu ideas for everything! It's one of my favourite topics to browse

Do you enjoy cooking? Otherwise you could just buy stuff. No point stressing yourself out unnecessarily. I'm sure chocolate refrigerator cake would be very popular though.

I hope the ulcers clear up soon. Do you have mouthwash and stuff for them?

I'm also going to the pharmacy later Leslie, that's probably the only exciting thing I'm doing today stupid eczema has really flared up again so I'm itching all over. I can get as much morphine and sleeping tablets on repeat prescription but I have to go and see a doctor if I want any steroid cream

Leslie what about a big pasta bake? Always a winner here and really quick and easy to make

I second a pasta bake or a big pot of chilli!!!!

I've just been to docs and got antibiotics as my boob is still really sore, so while I was at the chemist I got some nytol and multi vitamins. So here's hoping for a good nights sleep and some energy!