**Tamoxigang heading towards hearts and valentines - thread 47**

[BetsyBoop]

roses are red
violets are blue
sugar is sweet
but cakes are better

I think I might be very sensitive to steroids too KitKat. I didn't realise that they caused your diabetes, has it all cleared now that you have finished chemo? Good Luck with going back to the office tomorrow.

Really - I hope that the scan went well today - holding hand whilst you wait for your results.

Foo - Good to hear from you. I am pleased that your operation went well and wish you a speedy recovery.

Pickle - After reading about your day, I was worried you were going to lose your bed. It sounds like a right shambles, but at least you are there now. Good Luck with the chemo, I hope you don't suffer too many SE's.

My book order, The C-Word, arrived from Amazon today. It is about a women in her twenties writing about her BC experience. I was in two minds whether to read it after I found out the author passed away last year. It is here now, so I probably will read it - hopefully this won't turn out to be a bad idea.

kitkat that's really helpful and i think you're right. if you're losing one and having the other interfered with (implant to match) it's not a huge leap from there. How weird is it to have a numb boob? I can DM you (if you didn't mind) if it's too off topic?

hooray pickle glad you're in and hope what's to come is as bearable as it possibly can be.

good to hear your recovery foo and that you're doing well 2 days out. Enouraging to hear with thoughts of BMX. I think my surgeon will be good, he's done a neat job of lumpectomy so far and is at guy's which is considered a good breast centre from what i hear but who knows?!

hello updating well done DS for getting home well and bet he was totally chuffed with himself!

DS was acting like it was no big deal, but yes, he probably was chuffed! It was just as well he got home when he did though, 'cos it started chucking it down shortly after and he probably wouldn't have been quite so happy if he was wet!

I've been looking at the buffs (thank you for that demo link Betsy!) and that may be my first purchase. I will be getting some advice / demo at the hospital next week but the catalogue they have sent is so awful its funny!

Feeling a bit abandoned but delighted to discover my new ipad keyboard works well. Am having second lot of chemo. Should take an hour but still hooked up one hour and 50 minutes later, not finished and no one checking. Desperate for a wee but I was told not to move when it was started as if it leaks it is so acidic it would burn my skin.

At least I only have two more doses of this one to have and the next one will be in two days. Also sitting here in my clothes when I'd rather be ready for bed. Hopefully it won't take too long to suss out a routine that works.

Hospital wifi works well for emails etc but not sufficient for streaming tv. Fortunately my phone has unlimited 3G so I used that to watch Midsomer Murders

really I hope your scan was okay. Thinking of you.

Pickle, thank gd for earplugs n fridges, huh?
What's neuro-whatever?
I'm holding my breath in the hope that the 8 o'clock treatment and it's effects are limited in pain, tiredness, sickness etc.
didn't enjoy being in hospital but the kindness n care of most (not all) of the nurses made me actually cry when I left 8 days later. Get yer fridge stocked, girl!
I don't know whether morphine is something you'll need / be given. Bit different my op/ procedure. But I found my taste buds changed as a result of the anaesthetic n morphene (I know you're not necessarily having these). I became super sensitive to taste and everything tasted too strong. So the blander stuff was better t have in my fridge. Grilled chicken, vanilla yogurts (vs banana). I can hear u gagging at the thought of eating those on a normal bloody day.
Just trying to b useful. If only earplugs were as effective at blocking out useless advice. Lol

I'm waiting to hear what my care plan is. Think it'll be minimal. But I'm nervous as don't know yet.

Tiny I hope the book is useful I'm not sure I can say enjoyable !

Pickle hope by now you are all finished and tucked up ready for sleep.

Goodness hope you get the plan as to what's next soon

I'm off to bed so night night to all and hope we all get some sleep, mine is terrible again at the moment and the wind is howling which won't help !

tiny - am still working on the diabetes!! Glucose level was 20 but down to 10 when checked before my Op in mid Jan. But got a small dose of steroids in op so was 17 the next morning (ho hum). It's not being checked for another 2 months but i'm on a low carb diet, an exercise regime & 2000mg metformin/day so I'll be gutted if it doesn't improve. Level needs to be about 4.5 I think.

Hope all went well for pickle and you've been freed to get into your PJs.

Well done to your DS updating.

Still waving to really - hope your scan went well and you can head home soon.

harrietv - I can't seem to pm from my tablet so will send you a message tomorrow.

Still awake when I should be asleep. Mattress is U shaped and reminds me of the sort you find in cheap B&Bs where it envelops you. Makes sleep quite hard. What also is annoying me is this bright triangle of light in the middle of the ceiling. It is so bright I can see it with my eyes closed. At least I've worked out how to charge my iPhone and still use it - two lines required to reach from socket to bed.

Neutro thingy means I'm in isolation. They are supposed to ensure everything is super hygenic and visitors aren't encouraged.

I'm also starving and in pain from my line. Nurse said that I could have some cereal but then went off shift. Night staff aren't helpful and although I was promised some paracetamol it never materialised. I'm sure none of this will matter when the chemo drugs kick in and I start feeling really tired. One odd thing already is my wee has turned red!

Pickle, sorry your awake and hungry. It shocks me the different treatment you get in different hospitals.

Wee red - I'm sure there's an explanation but you need to ask. Senior Sisters are good to ask as long as they aren't called Bitch Face. I met one in ICU who wore her name
label on her face.

Yiu need an extension lead (take a chance as may not be allowed but plug In n say senior sister said was ok) if anyone asks, sleep mask (PM me your address n I'll send you mine - unused), box of cereal, chat w Senior Nurse (your new BF) about regular offering of paracetamol. Sound like a plan? May not all go to plan, but the idea may help u to sleep better. Hospitals r so annoying. U won't b there forever. They serve their purpose n you'll find ways around the worst bits, I hope.
Thank bloody gd for iPads. But, ask nurses to lock in your med cabinet when you're taken for scan etc. heard from a nurse that someone went down to theatre n had their ipad n phone stolen. Scum bag thieves. And that was a private ward! Naaaaiiiice!

(Pls excise bitty message posts)
I know I'm on the school gate 'Did You Hear About...' List. Yes, yes, I know I shouldn't care but... I do want to call/ pin against nearest fence the mum who let on that she knows (innocent email response to my response re kids' party: 'how are you feeling?). This is someone who bath says hello to me!
Want to ask while pinning her down aggressively so that she can't wriggle out/ is too frightened to lie:
Who told you
What did they say
Who have you td
Who else knows
(Ad infinitum)

Practising the art of restraint
Would rather practise the art of restrain.

If they only knew the aggressive monster hiding inside these pretty pink pyjamas, they'd keep shtum for sure!
Note to self: I must stop watching Breaking Bad

Lol
Grrrr

Hey pickle, hope you got some sleep. And some cereal. And some paracetamol. Hospital is a strange and suspended world, and that dependency on others is tricky. It sounds very likely that the red wee is from epirubicin - it's the E of the FEC chemo lots of us have and the red wee is one of its effects.

I agree with goodness on bland foods. Post chemo I've developed an affiliation for chicken breast, mashed potato, cauliflower and can cheerfully eat an all white meal. But I'm still having the piss taken out of me by my family for arriving at a carefully prepared meal by DH and loudly demanding mustard as "it all tastes like sh*te". I hadn't meant his food; I'd been referring to my taste buds which have a horrible taste to them, but I could have put it better....

Pickle I was going to say the same as wren about the red wee, they should have warned you though. Hope you managed to get some food and some sleep. When I was in hospital the nurses couldn't have been kinder and would do anything for you it's sad that it's not like that everywhere. Is someone bringing you some food in today ? At least if you had cereal bars or something by your bed you wouldn't be so reliant on them.

Could have stayed in bed today it's so cold. Lovely friend taking me to rads today decided to accept lifts if they're offered if breaks it up a bit so haven't had to go on my own yet.

Hope everyone has a good day don't forget to buy those cards and flowers for tomorrow

pickle - know it's different chemo for you but those of us on Fec-t had red pee too, almost immediately after treatment.

Hahah Wren
I remember a day that I sent DH packing with the 'wrong' soup. Later found out (was on a LOT of drugs/ still am) that I told him where to shove said soup.
Not proudest moment. Funny though

After about 3 hours sleep I've asked to have a sleeping tablet tonight. Never normally take anything like that but I feel shattered normally and the lack of sleep is making me feel sick. Not sure I understand why I had to have an anti-emetic at 6am but no chemo until 8.30am. Yesterday I had one following on immediately from the other. Just seems a bit bloody minded to me.

Buzzers at the nurses station seem to be going continually which means no chance of rest during the day. The current one has been going 25 mins without stopping. I assume they are actually different ones rather than nursing staff ignoring them. When they were late doing my chemo I was told they were very very busy. Yesterday I was told by the consultant and nursing staff it was important to have it spaced exactly 12 hours apart. Today the nurse said it didn't matter if the gap was 10-12 hours. Seems a bit random to me.

The nursing attitude is different here to the London hospital. I really hope I only need one lot of chemo. I can't imagine spending 8 weeks here!

Ds is too upset to go to school today. I'm a bit cross with my mum as I think she should have insisted he went.

I'm definitely getting some food brought in today. All the hospital meals are frozen so you can't choose bits. I fancied a cheese omelette for lunch but hate baked beans and the two come together. There does seem to be a lot of things with baked beans on the menu!

My food in hospital wasn't bad, had a lovely chick pea balti, and that nursery school favourite of jelly and icecream!
also it was served by a very handsome and charming young man so wouldn't have complained anyway ;-)

I only had a sandwich and breakfast in hospital. Both were fine though in the morning I had bread and jam, toast would have been nice !

Foo foo how did you sleep with your drains ?

pickle I was in isolation for 8 days when neutropenic also. It took me a day or two to get used to the bed and pillows. But I did get used to it and found it quite comfortable once I did.

My schedule for antibotics was midnight, 6am, midday, 6pm.. (I used to hate that 6am one, I was always asleep). The doctors told me that strict 6 hour interval was important, but nursing staff advised there was a 2 hour window (+/- 1 hour). It is probably similar for your chemo.

My DH downloaded a few TV series on his tablet to keep me company during my stay. I watched 3 seasons of Downton over 8 days.

I found this a great way to pass the time.

My food was only OK (but at least I didn't have to cook it). There was a pub across from the hospital, and I was tempted to ask DH to have them plate up a take-away for me. I used actually spend time considering what I'd order. Don't know why I didn't actually do it...

All the nurses and medical staff I encountered were lovely. But rushed off their feet, and I often had to wait or make second request for something. I recommend having a good supply of bottled water, I found water was the worst thing to have to wait for. I used get a fresh jug each morning, but sometimes it was late. And I moved rooms twice, and water jug didn't come with me.

Best of luck with the chemo and the long hospital stay.

I should have downloaded stuff before I came in. I was fooled by the hospital wifi. I started downloading an hour long programme at 9.30am and it is only halfway through!

Lunch ok so at least I know I will have two meals a day that are ok.

I'm getting a duvet and pillow sent in from home which will make life a bit more comfortable. Plus some food so I'm not worried about dinner tonight.

I've only asked for one thing so far and that was for the nurses to speak a little quieter at 3am! Hopefully with tonight's sleeping tablet I will have a better night.

pickle Get visitors to help with the downloading too..

What device are you using to watch stuff? iPad, Laptop? Laptop is easy, have visitors bring in downloads on memory stick (or even to post them to you! since you have long stay). I had mine on 2 tablets, my own iPad and DH's android. I used to send one tablet home with DH to download new stuff.

How are you feeling after the chemo? You have had 2 sessions now?

I've got a laptop and an Ipad but no one at home who can download anything unfortunately. Somewhere at home I also have a Kindle Fire but ds snaffled that and he can't remember where he's put it. I'm not overly bothered as stuff does download eventually and it's only in the evening that I want to watch tv. I can pay 4.50 a day for hospital tv but you have to wear headphones. I may do that if there is something special I want to watch but I don't want to do that every day.

I've had 2 sessions but 3 chemo drugs so far (2 x1 and 1 x 1). One more tonight. I'll be glad when the red weeing one is finished. I feel okay and no side effects so far. I'm on a range of anti-emetics - consultant prescribed three different types to ensure I'm not going to be sick! I also have to use two types of mouthwash, a special bodywash and a nasal cream!

I hope really is okay. Thinking of you and hoping the scan went ok.