*Tamoxigang Christmas Party* - 45

[Tiny100]

Morning All!

We're nearly in December, so let's get the festivities started.

[adds mince pies to the trolley]

marshy if you are about, how are you doing on tamoxifen now? I've been taking it just over a month now and it's still just a few hot flushes and the occasional night sweat for me, if this is as bad as it gets it's very doable :)

Betsy - did you already get hot flushes on Tax or is this new for you?

kitkat - I had first had hot flushes (mega ones!) on my second FEC cycle, then they calmed down and weren't quite so bad, but continued all through chemo and beyond.

I think I've had a few more since starting the tamoxifen, but still not too bad. I seem to get a run of them a few hours after taking it (take 5-6pm, flushes from about 8pm - 11pm) I've only woken up with night sweats a few times (but no idea if I've slept though others!) So IME not so bad so far :)

that's mangeable then Betsy. I had none on FEC but had them straight away on TAX - had me up several times in the night and I had them in the evening but I think they are reducing now. Don't yet know what will happen on Tamoxifen but am interested to see that you have found the best time to take it is early evening.

Well, I called the secretaries of both of the surgeons who'll be operating on me (jointly).
Surgeon A is the tumour guy. Surgeon B is the spine n nerve guy. Spine-nerve guy requested yesterday's scans and has requested op dates but hadn't mentioned to me or to surgeon B (let's call him 'tumour man') the fact that he'll be on annul leave until 22/1. So, the op that spine-nerve guy wanted done within the month (told to me on 31/12) ain't gonna happen within that time frame. Particularly since, unless by some miracle the results are in and I'm called in the morn to go in to hear results tomorrow night, the results won't even have been delivered. Do they not think I might be ... interested to hear (let alone going out of my mind)?
Tumour-man didn't know that the other surgeon was about to go on annual leave. He told me he'd come back to me with The Results (most recent MRI and CT) AND the op date.
I'm waiting to hear.
Familiar. But it was nice of him to call. I hope he dies. He said he'd tell me over the phone. Fingers crossed!
I told him, towards the bed of the conversation, that "I'd appreciate that as it's almost 12pm and I've not managed to shower or dress and I'm sitting on my bed with my 6 yr old in his room." As my voice wobbled, he got the picture.
Dreading school run 'How was your Xmas?' questions. Want to sing (to the tune of 'a partridge in a pear tree':
1 X-Ray, 2 CT scans, 3 MRIs and a biopsy ... inconclusive.
Sing along, I think it 'works'. Catchy!

Does. Not 'dies'. Certainly not dies.
Noooo
Bloody fat fingers.

Sorry to hear that goodness do you know how long the surgeon will be away? Hope you hear soon. Lol at your typo I think you might need to cultivate a certain black humour at this time. But to be serious again would you consider going ahead with just 1 surgeon? Can you ask them both if they think you should wait till he returns or go ahead asap even if he is no there.

goodness if the other surgeon is due back on the 22nd then they might put you on the surgery list for the following week! That would still be within a month!

My surgeon was on two weeks leave the week following my lumpectomy. But I was added to her list for node clearance, for as soon as she returned.

As for school run, just say Christmas was lovely. Which I'm assuming it was? You don't have to mention the other stuff. I go back to doing school runs on Thursday and when asked I will reply, Christmas was lovely thanks. Because on the whole it was, even if I felt rough for a few days after Chemo and I had lots of delays on the trains etc etc

Remember you still have a life outside of what's happening with you medically, don't let it consume you. Xx

Really, you're right. Won't people be a bit shocked when it all licks off though? Still, taking your advice as otherwise the questions will drive me insane.

I've a rubbish short term memory and on my phone. That was for Live.
Really, they have to operate as a team as one is the sarcoma centres tumour man and the other is the nerve and spoke guy cos it's a v v rare tumour that's in a 'well-dodgy' place (spinal canal) and has damaged the spine. Spine-nerve guy could do it alone as has operated successfully on one of these (if, indeed, it IS one of 'these') but seeing as he is the one who is away and is not on the team any more, but is coming in to help tumour-man, it's a two man jobby. Will call again today as don't want spine-nerve guy to go on holiday without giving a date.
People say that once you have a date, it's easier to handle. Is this actually true? Wish I knew whether it was benign now. Too much uncertainty for too long (although in the greater experience of those on this group, this is probably nothing) - I am anxious about the amount of nerve function they'll be able to preserve and about what 'inconclusive' (biopsy) means ;( won't know until after the op.

goodness STOP worrying about others and concentrate on you and your family. But in answer to your question, No I don't think people will think it's odd. When you get your surgery date you can then tell the people you want to tell. You'll probably be shocked at how little people care, and I don't mean that in a nasty way. I mean people are so busy with there own lives, that although this is a HUGE deal for you. People will still treat you the same way, and after a few weeks your news will be old news!

Try to concentrate on getting your surgeons to give you a date, because yes it is easier, once you have that date to aim for. Xx

goodness I have a rathe black sense of humour and you typo "I hope he dies" has me roaring.

I'm up to dae with you goodness and with betsy but a bit lost as to who else is having what etc. so apologies from me.

Thanks for aloe Vera tip re rads, that is the only plant I have in my house as it thrives on neglect.

I have finished chemo now, MRI on Monday, surgeon on Thursday and op on 10th Feb. (BMX). Will be delaying reconstruction due to rads. Well that's the plan ths week anyway.

Also planning a holiday in early July, cannot afford it so may have to sell a child but am determined to do it anyway,

goodness - I thought your typo was funny too - if a little harsh!

foo - am glad you're planning a holiday - even if you have to lose a child. Now mine is booked it's nice to have something to look forward to.

I picked a new car yesterday - just have to go back today to do the paperwork (thought I had better sleep on it first).

Glad I brought a giggle

Kitkat new car how exciting ! Part if getting freedom back too :)

Foo foo don't worry about keeping up with the thread I'm sure we all all struggle. Well done for finishing chemo, no more cold cap !

Really good to hear from you, how are you coping with work ?

Betsy I'm glad you don't have too many tamoxifen SEs I'll be starting that soon too

I was wondering about wren too, hope everything has gone ok

Goodness really has given you some good advice and I'm sure you'll feel more in control once you know exactly what's going to happen and when

Hi Betsy, just a quickie to say I took your advice on the timing of the tamoxifen and am now taking it in the morning rather than before bed. I think this has improved things at night for me as I was feeling very hot but less so now and sleeping a bit better. Thanks for that

It was my first day back at work yesterday on phased return. Was out of the house 9.15 to 4.45 with commute. Felt shattered last might and glad to have the day off today. It was good to see everyone though and to get the first day out of the way, but I am surprised by how tired I feel especially as I think I've made a pretty good recovery from the surgery and have had no chemo to deal with. I will definitely be pacing myself over the next few weeks.

Hi all- sorry Am also struggling to keep up after lovely but busy time in France then chemo yesterday then steroid insomnia.

Kitkat new car sounds great.

betsey tho aloe works well , ask your rads unit first as some are extremely strict on what you use in case of reaction. Mine were so I used of before and after to good effect (only got blistering at end in most delicate bits).

Goodness, I agree with really to focus on family not others. If you really don't want to wait, can you enquire about other specialist( as you know there are more than one in team ) but may be that want your man as seen this before. that is not necessary something to worry about but more reflection of sarcoma being an umbrella term for lots of different tumours so it's quite possible only to come across one or two exactly the same.

Nap time here-sorry to miss anyone but waves to all.

Off to the gym now as exercise is supposed to give you energy, isn't it?
Planning the afternoon on the sofa with breaking bad.
Love to all

Marshy - breaking bad is great isn't it. I'm on season 4 at the moment but DH has started watching it with me so I can't watch it during the day.
I'm also interested in how tired you are - this is a major concern of mine as I currently work on a client site which is 1 hr drive from home so I guess I will need to plan not go there on consequtive days to start with. (I am tired without even going to work and have more surgery before I go back in Feb).
Also by taking Tamoxifen in the morning are you getting flushes during the day?

goodness - your typo made me howl with laughter, I thought you were being a bit harsh! As others have said don't worry about telling/not telling people. Tell good friends when you are ready and let it trickle out to the rest. You will get a few "head tilts" but you will be yesterday's news soon enough for anyone other than family and close friends. And yes it does get easier when you know exactly what's what and you have a plan.

marshy , that's great :) but I can't take credit for the advice, it was from my lovely and wise BCN who suggested moving the time around as different times of day seem to suit different folks.

gigs - yes I checked they are ok with aloe vera gel (and my trusty doublebase) - I had to ask as I often struggle with aqueous cream, some brands have an ingredient in that can bring me out in a rash!

Kitkat - I'd definitely be looking at minimising the driving for a while both from the tiredness angle and also not overdoing things too soon after surgery. I'm hoping to go back on a phased return even though I only do morniings, I wasn't going to, but my BCN said really I should as I'd be surprised how hard it is for the first few weeks getting back into the swing of things.

well 4 rads done, 11 to go, after tomorrow I'll be a third through. I know there's time yet for tiredness and soreness, but it seems the wise folks who said rads is a breeze compared to chemo were right. :)

I forgot to say before that I also went back to choir on Monday night - first time since June - just another little bit of getting my life back again. :)

Betsy that's great about going back to choir :)

I'm also struggling with tiredness but could also be laziness with me as I rarely have anything to do early in the morning when the kids go to school so I go back to bed, things like this are getting to be a bad habit !

I have an appointment about rads next Wednesday, I think it's just a consultation not the actual planning appointment

Greeneyedcat - I'm 46 (just) and assume the Tax brought on the menopause but don't know as I have a mirena coil. Will find out soon though as it is coming out in 2 weeks!! I think Tamoxifen often does make you menopausal but not for everyone.

Malt - I'm the same - I often go back to bed when the kids have gone to school simply because I have nothing I need to do - helps fill the day!! Even so I'm tired again by mid-afternoon.
Good news you have some sort of Rads appointment come through - 1 week is not too much longer to wait.

Betsy (and any other sicky types) - I still get days (like today) when i am really nauseous - do you still get this sometimes?

Re tiredness - I have kept on exercising as much as possible throughout chemo, and by that I don't mean a heavy session at the gym (although I've been to the occasional spinning class when feeling up to it), but mainly I've been walking. I tend to do the school run, then go straight to meet a friend and her dog and we walk through the woods. Even on days when I've felt tired, or it's been pouring with rain, I have made myself do this as I feel so, so much better afterwards and have more energy. My lowest days are those when I haven't been out for a walk. I even go out walking through the woods at the weekend, mostly on my own, as I know I'll feel the benefit. So yes, doing some exercise definitely gives you more energy! I was pretty fit before the chemo started, and I've been able to maintain a certain level of fitness by daily walking, so hopefully when chemo is over I can get back to my usual routine of spinning / cycling / body pump without too much difficulty.

Tell me I'm insane, but I was hoping I could swim regularly too during rads. I've not been allowed near the pool during chemo due to germs, but I'm thinking swimming will be kind to sore skin - thoughts from those who know?

Can I also ask, I've got my first rads planning appointment and CT scan on 6th Feb. does anyone know if you're given the hideous contrast-dye thingy when you have this CT scan? The last one of those I had was extremely painful when the dye went in and I'll cry if I have to have that again!

Oh handbags you are good now I feel even more lazy !!