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**Tamoxigang counting down to Easter eggs- thread 48**

998 replies

BetsyBoop · 21/03/2014 20:05

throws some hot cross buns on the trolley

OP posts:
reallyreallyworried · 09/04/2014 19:21

Thanks for the hugs and support, a day with my charges and I am feeling alot calmer! Smile

UK thanks for all the advice. I will read through it this evening, if I can concentrate for long enough! Just one thing, I only gave a brief run down about what was said yesterday! They offered those choices and we are going to discuss further, once they have all the info! Don't worry I intend to get as much info as I can before I make any decisions!

As for changing hospitals, I'm not sure that's going to help! At least here I know that my case is now being watched and checked over by the top dogs ( fearful that I might sue them)! If I change hospitals I will become just another patient! If that makes sense!!

foofooyeah · 10/04/2014 01:40

zombie didn't realise you were having mx as well. I would not be in a rush to leave hospital in that case especially as you live alone. You do get very used to drains although they are very annoying and painful if you catch them on anything.

My old friend insomnia seems to have made an unwelcome return.

reallyreallyworried · 10/04/2014 02:09

foofoo I feel your pain! I am soooooooo fed up with not sleeping properly! The only plus is, I still manage to get through the day without feeling too tired!? I think I am just getting used to having very little sleep!

At the hospital today, waiting for Rads. I met 2 lovely ladies who are on the same journey! I think we surprised each other at how different our journeys had been!

But one thing we all questioned and couldn't work out! Is why do the number of Radiotherapy treatments vary from patient to patient? I read somewhere on line that we all end up having the same dose, it's just given in bigger/smaller amounts depending on the number of Zappings? Is that right? If so why/how do they decide how many sessions to give you?

See these are the things I question at this time of night!!l

Honeybear9 · 10/04/2014 07:38

Morning all - well it's my turn today first chemo at 2.30 this afternoon. Keeping everything crossed it will be kind to me as hospital still refusing emend.........
Didn't have a good appt in chemo suite on Tuesday nurse wasn't even sure which chemo meds I was going to have hoping today they will get it right. Dd2 has her first gcse exam today so it's a stressful day for us all!!

weebarra · 10/04/2014 08:07

Good luck honeybear to you and you dd. Don't worry about the nurse, I'm sure it will be better today.
DS1 and I are off to an event at the science festival today, then lunch.
Need some honesty from you ladies who have had bmx. I am having mine in first or second week in May.
On the 17th May, my footie team (have had a season ticket since I was ten) may be playing in its first Scottish Cup Final in its 125 year history.
There's no way I'll be able to go, is there? Sad

Wren48 · 10/04/2014 09:17

Honeybear, chemo for me today too! Good luck with the nausea. I'm moving onto tax so it's a whole new (I'm hoping better) ball game for me. And that's an early GCSE. We are (trying to be) in revision mode for ds1's GCSEs but my lovely boy is way behind. I'm trying not to blame his lack of preparation on my illness, but I don't think our wrecked Christmas holidays ( me mostly in hospital) helped much.

Also not sleeping..

really I'd like to know that about rads too....

wee, I guess it will make a big difference if your op is first or second week May. If second week, I know it would rule me out as I react badly to general anaesthetic, but people seem to vary wildly. If the interval is too short you may still have drains in, but most hospitals don't like to leave them in too long and you could go out, but might just feel very vulnerable.. I am completely ignorant about football matches, so sorry if this is a stupid question, but is there any chance of a one off upgrade to comfier seats/ a more private area?? It just sounds so special that it's worth looking at all the options...

BetsyBoop · 10/04/2014 09:45

Re rads qus, hope this helps:

The "old way of doing it was 50Gy in 25 fractions, the "new" way (which trials have shown is just as effective) is 40Gy in 15 fractions.

As to why some still get the former it's down to local protocols and onc preferences.

For example ( from here

"50Gy in 25 fractions may be used in place of 40Gy in 15 fractions at the discretion of the responsible clinician as both represent ‘International Gold Standard’ regimens. In particular, 50Gy in 25 fractions may be favoured in the following settings:
? connective tissue disease (as RT can be discontinued in the 5th week if patient develops a severe acute radiation reaction)
? very high risk of local recurrence – heavily node positive or inflammatory breast cancer (as 50Gy in 25 fractions is a slightly higher total dose compared with 40Gy/15 fractions – equivalent to 46–48Gy in 2Gy fractions)
? locally advanced breast cancer with no prior surgery."

Boosts are commonly done following lumpectomy, again local protocol /preferences will dictate, for example

"All women under the age of 40 or women of any age who have undergone resections with involved margins (no further surgery planned) should receive a boost. The standard dose is 16Gy in 8 fractions (or equivalent assuming an alpha/beta value of 3.0Gy). Units may also choose to boost all women under the age of 50. A boost should be considered in women >age 51–60 with additional risk factor(s) for local recurrence: lympho-vascular invasion, Grade 3 disease, lack of recommended systemic therapy, ER negativity, HER2 positivity, ‘tight’ margins, tumours >3cm. It should be noted that the only factors shown to influence local recurrence in the context of completely excised invasive disease on multivariate analysis in a consistent manner are high grade and presence of lympho-vascular invasion. Patients >age 60 should also be prescribed a boost if considered to be at particular risk of local recurrence. Women in this age group overall have a local recurrence rate at median follow-up of 10 years of 5.5% without boost."

OP posts:
difficultpickle · 10/04/2014 09:55

Hope chemo is ok Honeybear and Wren.

I'm back into hospital next week for a repeat stay. 8 days of chemo this time rather than 10 so I'm wondering if this will have any significant impact in reducing my overall stay of 5 weeks down to something more manageable. Not looking forward to going back. Ds was very very upset last night at the thought of another hospital stay although I'd warned him it was coming. It means I'm in hospital over Easter (we should have been in New York!) and for a week and a half of ds's Easter holidays.

At least the sun is shining and I hope everyone has a good day.

foofooyeah · 10/04/2014 13:27

Weebarra, I honestly don't think you will be well enough for the match I'm afraid. Are you having recon at the same time? If not there is a chance but if you are I would say definitely no as higher chance of still having drains in.

BetsyBoop · 10/04/2014 16:50

Wee I would reckon a min of 10days after your bmx (assuming no recon as that is my experience) and you could be ok provided you have someone to take you and there's not lots of standing around etc. Most hospitals seem to whip drains out after a week regardless due to infection risk - I wouldn't have fancied going with drains in, I barely left the house (quick walk around the block for fresh air was all I did!)

OP posts:
weebarra · 10/04/2014 17:28

Thanks guys, it's all seated and we could probably get a taxi there. If I get the drains out soon enough, I'd be optimistic. I'm not having recon till later as I get to spend the DCs summer holidays having rads.
We still need to get past the semis first - this weekend. I'll be expecting you to cheer on St. Johnstone!

Honeybear9 · 10/04/2014 17:45

Hi all have spent a horrible day waiting to start chemo - sat waiting for 2 hours to be told meds were wrong - onc has prescribed ec not FEC-t & is on holiday till Monday. Wanted to try the cold cap but this had been missed too. So fed up - hopefully will start on Monday if hospital can get it sorted in time

Speedypenguin · 10/04/2014 18:39

honeybear how awful for you. When I went in there was a debate whether I should have it because surgery was three days before- I know I would have had a complete meltdown if I had to wait! Hopefully they will get it sorted for you quickly.

wren hope it has gone well today.

difficult hope your stay is as quick as possible and that your son is ok.

I am beginning to feel a bit better and managed to get to the hospital for results. The biopsy confirmed that the tiny lump was same as big lump but that my sentinel nodes were clear. They seemed pleased with this. My brain isn't really working yet so will process over next few days.

malteserzz · 10/04/2014 18:55

Speedy glad you've had your results and good news that your nodes were clear

Honey sorry you've not had a better day, how frustrating. Can you plan something nice for the weekend to help take your mind off it a bit ?

Wren I hope it's gone ok for you today and your side effects are few with tax

Pickle your poor ds and poor you it must be so hard thinking of going through it all again but get through it you will then you can replan the trip to New York

I've finished work for Easter Smile

ConsiderablyBiggerBuns · 10/04/2014 19:08

Hi All, am back at home. In case it helps anyone reading will give some info about the experience while still fresh in my memory. So, quick recap, i have had BMX and total node clearance ahead of chemo and rads to follow later in year. Hospital trip started well, arrived 7.30 and told I was first up. At 10 I was told that they were still waiting for a bed and at 11.30 my surgeon came to see me encouraging me to write to the chief executive about the loss of beds. I was told i had a window until 12 and would have to postpone the op if no bed available by then - that was probably my lowest point since my dx. Luckily a bed became available at the last moment. Some poor sods were only operated on if they could be sent home even if they should have had an overnight stay, so i was quite lucky.
Pre-op stuff was all okay, i could have done without the chat that anything i've seen on youtube about being awake during ops was very rare - i've never seen any of that on youtube!! Woke up in recovery about 3 and a half hours after going under. Felt a little nauseous but soon past. Worst bit was being desperate to need the loo but unable to use a bedpan. The lovely girl looking after me was obviously being trained and didn't know what to suggest, luckily a more experienced nurse got a commode and relief to my bladder was restored. I was taken up to the ward on a drip for morphine and oxygen which went through a tube into my nose which wasn't as unpleasant but was as unattractive as you might imagine. A drain either side, make no bones about it, they aren't subtle but they are there to do a job. Felt surprisingly well on the ward, able to eat, text and make phone calls. I didn't use the morphine, was on pretty strong oral painkillers which was enough for me, did try stopping the oxygen but felt very woosy so plugged it back in.
Not a great night's sleep, despite the earplugs. On a ward with a whiner, a snorer and a vomiter but i got my own back as i had copious flatulance. Next morning, i had been seen by the surgeon, his medical team and the BCN (for pinning of fake boobs into bra) all by 9.30. I could have chosen to discharge yesterday but i still had 2 drains at that point which were getting tangled so opted for a second night in hospital, with the slight hope that as i was such a good 'drainer' i would get both drains out by today. Felt really chipper all day yesterday, had RHS drain removed and drip and oxygen by midday. Drain removal was not unpleasant. Op sites sore but still manageable.
Started off a better night's sleep but woke up with tummy ache and have had constant and at times crippling indigestion ever since. The rennie with a use by date of 2000 provided by my husband has taken the edge iff of it but could do with a bit more of that early flatulance.
Was discharged this morning, still with LHS drain, artfully camouflaged by a very natty bag provided by the BCN. I'm guessing there is some lovely sewing circle assembling these up and down the country. The drain is a pain, i won't be able to have mine out until monday now, but despite being bulky and inconvenient they are easy to operate and you wouldn't need anyone to assist with keeping them clear. I have hooked the handles of the bag around a belt and this keeps it out of the way and more or less hidden by my pyjama top, also stops the dog jumping up and getting caught in it which has happened once already! He got shouted at, poor thing. Had to wait for several hours for my painkillers from the pharmacy which was frustrating.
Was tired and a bit emotional today. A combination of poor nights sleep and a bit of reality. The breast area isn't pretty, my surgeon has left some excess skin to assist with the recon next year so not very neat, for some reason made me a bit sad when i got dressed and not feeling up to trying a bra yet. Had a snooze this afternoon and have been well enough to potter around a bit this evening, just wish this heartburn would bugger off. Been sent home with paractemol and something stronger but haven't needed either yet.
wee i wouldn't give up on that football match yet. I have a birthday party for 12 teenagers planned for a fortnight and fully intend to be well enough to shout at them for giggling at 3 in the morning.
I didn't know much about the lymphodema risk before the BCN spoke to me yesterday, as with it all, it is manageable and a war wound of this particular experience. The movement in tgat arm is definitely a bit restricted at the moment but i will be following my exercises dilligently.
Sorry for the long entry, hope it might be of use to anyone about to go through the same thing and best regards to all of the rest of you at your various stages and challenges of this roller coaster ride.

foofooyeah · 10/04/2014 22:29

buns I laughed at your flatulence riposte!!

Hanging around waiting for a bed is pretty poor though.

reallyreallyworried · 11/04/2014 06:48

Hi all

speedy glad you are feeling a little better. Hopefully the worst is over for you on this cycle.

buns I'm glad you are home and all went well. After the initial bed issue! Hope you make a speedy recovery, and you get rid of your drain soon!

malt enjoy the Easter hol's and especially your much deserved holiday away, can't wait to hear about it.

foofoo hope you had a better nights sleep.

Betsy thanks for the info on Rads.

Today's Rads will be my half way point! Which I thought I would be happy about (well as happy as you can be) but I have woken in a foul mood and I really don't want to go Sad 'I've just had enough!

I'm not sure if it's the Rads that are the real problem or the fact I have an appt with the Oncologist afterwards?!

All I know is that I just want to curl up in bed and pretend this isn't happening!

malteserzz · 11/04/2014 07:36

Morning Smile

Bigger buns glad it went well after a shaky start

Foo foo how are you doing ?

Really good luck today, not surprised you don't want to go. At least after today you have the weekend off. I'm spending the day sorting bits out for holiday still don't believe it will actually happen though only 2 days to go

difficultpickle · 11/04/2014 14:57

buns glad it went okay.

really hand holding for you today. I hope the appointment isn't to difficult.

malt enjoy the Easter hols. You're late finishing, does that mean you go back later?

MomOfTwoGirls2 · 11/04/2014 15:40

3 Rads down, and 30 to go!
My MooGoo arrived, hopefully it will do the trick for me. My Radiologist also wants me to run cool calamine tea into the treatment area. Weird?

I'm going out to dinner with a few friends tonight. Kind of celebrating being finished chemo, and the others all have a variety of other things to celebrate also. Hoping for a fun night.

Malt Lucky you heading off on hols. Roll on July so I can do likewise.

Wren How's tax treating you?

Difficult wishing you well for your upcoming hospital stay.

Hope everybody undergoing chemo is doing OK.

malteserzz · 11/04/2014 16:40

2 weeks from today pickle we always have the week before Easter and the week after it's the rest of you who are at an odd time Grin

Mom have a lovely evening. I didn't know about the camomile tea till the other day or I would have tried it ! I did burn and peel under my boob and on my collarbone but it didn't hurt and did heal quickly

foofooyeah · 11/04/2014 20:29

malt I'm fine thanks. Been at the park okay with my ten year old and two if hs friends. Saw a couple of other people i knew so nice chat.

Left boob that had dodgy skin has healed up nicely, so now the right one has decided to play up. Just seems rough and a bit uneven. Anyway seeing surgeon on Tuesday and can have a chat with her then.

honeybeeridiculous · 11/04/2014 20:32

really my DF felt the same as you at the half way point, we were all trying to encourage him that he'd made it to the half way stage but he was totally fed up with it all and feeling extremely sore and tired, the appointments are all around 9.30 in the morning, which is a real struggle for him to be up and ready for.
Back to the present, he has 3 more sessions to go Smile he rallied a bit last weekend and was more energetic but today he asked the oncologist if he could call it a day and miss the last 3 sessions Hmm of course he was persuaded to finish the course,
He's skin has become very red and sore in the past week and he was told that the effects of the rads continue for another month, can anyone verify this please?
Hope today went ok for you really and hope everyone else has a good,sunny weekend.

Wren48 · 11/04/2014 20:41

Well, day after my first tax and I relished the lack of nausea and enjoyed feeling relatively ok last night. Now feeling distinctly weird, but not as bad as FEC weird. I'm sure all the rest of the SEs will kick in over the next few days but nice not to be felled straightaway.

Honeybear, how incredibly frustrating for you. I hope that it all goes smoothly for Monday.

Thanks for the rads info, Betsy. Really helpful, even though I freaked out to realise that I count as very high risk of local recurrence. Upsetting.

I've got my Moogoo too, Mom! Bit anticipatory as rads aren't for months yet for me.. Just feels nice to plan ahead.

Pickle, so sorry that you end up back in hospital over Easter and during ds' holidays. Just really tough. I hope knowing what to expect will make it a bit easier. Is it definite about changing ds' school or are you still thinking about it?

ConsiderablyBiggerBuns · 12/04/2014 04:54

Anybody else suffer really badly from heartburn/indigestion following surgery. Had it continually for over 48 hours now, at times crippling painful and no relief from normal meds. Medically, don't understand why, perhaps if I did, I could either find a solution or at least understand when it will stop. I don't normally suffer with indigestion. Should lying propped up or flat help?