*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]

malt that is GREAT news. I am sooooooooooo pleased for you! You will definitely have to celebrate seeing in the New Year

Thanks for the offer of advice re Tax, I'm sure I will have lots of questions. When is your radiotherapy likely to start?

Enjoy celebrating your fantastic news xx

goodness good luck with your appt tomorrow. Let's hope you get some good news.

As for what to say to people. I would answer honestly, which is yes thanks I had a good Christmas! No need to go into more detail unless you really want too!

I'm half way through Chemo and when friends ask how I'm doing, I'm honest and say okay! Because most of the time I am! Thankfully! If I am having a rough day, I might just say, having an off day!

Just remember there are no rules in how to handle this. It's up to you how much you say and to whom you say it! Just do what you feel is best for you. Xx

Lizs welcome I've no direct experience of chemo on tablet form but I'm sure it has much less side effects so I would have thought she'd be able to carry on as normal, hopefully someone more knowledgable will come along soon

Really thank you I am so relieved ! Felt sure it was going to be bad news. We're going to a friends party for New Year's Eve ! I'm waiting for a letter about radiotherapy and my hospital never move very quickly so I'm guessing it will be in February
How are you doing ? Hope you don't have too many side effects x

malt yay for your good news!!! I am delighted for you.

I'm sure I'll be on here with questions about Tax once I begin. Meanwhile, I'm planning to get as much enjoyment as possible from next two weeks, until I start. This cycle was pretty kind to me, makes up for having horrible cycle previous time. Perhaps that week in hospital and subsequent week delay in chemo was a blessing in disguise!

Just a quick wave, and a high five for malt

I have to google rnoh as it was puzzling me! Know what you are talking about now. Hope telephone call this afternoon is ok goodness

So final chemo tomorrow for me - still got to get through the agony of the cold cap but it has worked for me.

Just popping on to say malt i'm utterly delighted for you! And brill news for foofoo too, hope the cold cap isn't too yuck tomorrow.

goodness fingers crossed your news/doc negotiations go ok.

I'm back to work a week tomorrow. Saw the occi health nurse and she said that most people in my situation take another couple of months (!) so I'm going back early and should have a very graduated return over 6 weeks. Doing 2 short days the first week.

Yay malts for results.

Mom I haven't found tax too bad but I think am on lower dose as it's combined with something else.

Liz's- hard to say how tablets will affect dm as depends on her/does/type of tabs. A couple of people here on capacitbane who did carry on tho I seem to recall nausea and sore hands/feet being an issue. She should ask oncologist or specialist nurse for what main side effects are and how to deal with them. Radio is likely to make her very tired and skin sore as treatment goes on.

Goodness -fingers crossed you have more info . I had second and third type opinion as oncologist and my bil (who is a consultant) went over results and double checked on surgery . But with rnoh you tend to get the experts.

Foofoo does pain killering up half an hour before help any ?

Thanks . She had radio earlier in the year (different area) so is aware of the tiredness, travel fatigue, soreness etc. Most worried about nausea and diaorrhea as she is struggling with eating well as it is.

Tell her to ask for referral to dietician as they can help a lot on limiting wait olds and maximising dietary value of what she can eat. If she is struggling with d and v , speak to oncologist as they can fiddle with meds to help. There is no need to suffer .

Tried to get a dietician referral before (this has been ongoing for 18 months now) but told not necessary and it is trial and error as to what agrees or disagrees Not sure how forceful she has been about it though, but will ask again.

Consultant who organised the biopsy just called me. Hooray!
He (rare tumour man) can work with the consultant I've heard good things about (neurologist and 'spine man') and is more than happy I meet with the neurologist, as I'd arranged, tomorrow. Phew! Bloody phew! Says wait times at RNOH are worse than at Wellington but place is up to me. They can only be sure that it's not a nasty v aggressive cancerous tumour. He doesn't know whether it's benign or malignant though as is v difficult one to test without first removing it. Huh? They'll only know it's not malignant for sure when they remove it. They won't know until op whether or how much it's intricated itself in nerve sheaths. If possible, they'd like to remove the whole thing. How can they not know whether it's cancerous? Biopsy Man told me that it (tumour) was made up of same substance all the way through so they only needed to take a sample from its edges. Either it is or isn't. If it's not a nasty aggressive cancerous one - are there friendly ones? Casper the ghost types? Hmmmm Don't get it.

Thanks for all the good wishes I'm having a nice glass of fizz to celebrate !

Marshy good news about going back to work

Foo foo good luck for your last chemo I hope the cold cap is not too bad for you I always took paracetamol before and had a hot drink while it was on, I'm pleased it's worked for you

Goodness I'm glad they rang you but shame you don't have all of the answers yet, hang in there

Goodness sorry you haven't got total answers but it's something that they are saying it's not very nasty. They have to be cautious though as can't do definite tests til get it out .

I can help a bit on Wellington v rnoh as had one op in each.

Wellington - pros- not likely to get bumped for another op, lovely rooms and great food ( not to be sniffed at if you are in for a while). Senior neuro nurses are fantastic. There is the most fantastic specialist pain consultant working there so your rehab issues (ESP given history on addiction) would be well covered.

Cons- most of nurses are bank ( ie temps) so mixed quality ( they messed up my pain relief til consultant yelled at them). The icu isn't as high tech or well staffed as rnoh so in terms of operating theater and after it's not as good.

Rnoh pro- the best nurses, drs in theatre and icu .

Cons- it takes a lot of emergencies so could wait or ce bumped. Some of private nurses not great (but not to same degree as Wellington), the rooms/food are ok but not quite as nice as Wellington but lots of good places for family to get supplies/take away locally.

If it was me, if I was dead scared about op then go to rnoh . If you are ok on this and want a more comfortable/well looked after stay then go to wellington.

Does your consultant/ surgeon have initial c?

Gigs - You have even got me deciding which hospital I would choose should I ever have a spinal tumour!

{{{Hugs}}} Trice - Staying alive sounds like a good plan for anyone to have.

Malt - So pleased about your results - think you deserve a whole bottle, not just a glass of fizz!

Foo - Good Luck for tomorrow - what a way to end the year! Here's to a healthy 2014. Good to hear the cold cap worked for someone - thought that it working was a bit of an urban myth.

Lizs - Can't help much, but Ensure + can help if your Mum's appetite is poor. You can get either on prescription or direct from the chemist.

Goodness - Good news that your tumour is not aggressive, but have a feeling that you will be in for a few sleepless nights with all that info whirling around your head. Hope you get an op date soon.

As for me, I didn't make it to Dorset - BIL came down with a vomiting bug, so we decided to stay away. Instead we have gone to the Kent coast where OH's parents live. We have been having lots of fun walking on the beach and eating fab food. Looking forwards to seeing the back of 2013 - for me it can't come quick enough.

Really grateful for your insider tips comparing RNOH and The Wellington. Think I'll opt for RNOH with a few days at The Grove (one night, probably) to celebrate once I'm, please gd, all better and the ordeal is over. Feels odd to be no clearer about the tumour or nerve sheath 'stuff' having waited (anxiously) for a little while. Hey ho. Good news and 'probablies' are a lot better than other possibilities.
I absolutely can't wait to see the consultant I've heard has successfully operated on this thing / similar before. Can't wait.
I'm sorry that I can't remember any of your 'names' or more than one response when I type here. Several reasons: crap short-term memory, I feel I've nothing of value to share to help with the experiences being had, suppose I'm blocking out the chemo talk a bit as I'm scared of it, with results looming/ not conclusive. It's very selfish and I'm sorry.

Great choice - rnoh is a great hospital. And I like your treat idea.

Tiny glad to be of help.

Doing some frantic tidying for charity especially toys. Off to ballet with big gig tomorrow , am going with dm so we are off for tea at nice hotel first. Think it will be a quiet nye as off to French France after.

Who wants to start planning a feel-better treat day/ overnighter?

You would be surprised at some of the information I store away in case it is of use at a later date Gigs! I am born worrier and based on the pros and cons, would have gone for the RNOH too. The Grove is a lovely hotel Goodness, I like your style.

Enjoy the ballet Gigs - I love going, but not been this year.

Feel like I've been cast at sea (at night). Now, I'm giving to pad my dinghy out with emergency blankets and name the best of/ gee used it this feeling.
Truce, how are your NY resolutions coming along?
Malt, does that mean you're on the home stretch now?

My typos are ... interesting.

Love all the brilliant advice on this group.

Yes the cold cap does work for some, have hardly any eye lashes left, and body hair getting very sparse, but still have a full head of hair. It is quite unusual as bcns comment on it.

Had forgotten about taking pain killers so thanks, may take some mulled wine in for my hot drink!

foofoo good luck with your last Chemo! Mulled wine sounds perfect just keep reminding yourself, that this is the last time!! Xx

I'm hoping to stay awake long enough to see in the New Year with my family, although I am so tired after last Chemo dose! It's ridiculous I haven't been doing much but I am knackered! Back to work Thursday! That could be interesting, if my energy levels don't reappear!

Anyway, I hope everyone has a lovely evening. Let's hope we can all have some positive news in 2014!

Lots of love to you all.

Xxxxx

Morning all
Really just go with it, if you're tired then rest, by the end of chemo I was falling asleep in the day every day

Foo foo best if luck for your chemo and the cold cap

Goodness yes I've had 2 ops and 18 weeks of chemo and now only 3 weeks of radiotherapy to go !

Gigs enjoy France

Hope everyone has a nice evening tonight whether you're staying in or partying. I'm off to a house party to get hammered ! Let's hope 2014 brings nice things for us all x

LIZS do you know what chemo tablets your mum is having? I had capecitabine as part of my chemo, meant to be in combination with IV oxaliplatin but some cycles I had just the capecitabine tablets as struggled with oxaliplatin side effects. The capecitabine gave me constant diarrhoea and nausea, but I was being treated for bowel cancer and had my whole colon and rectum removed so it's difficult to know exactly how much was the chemo and how much the surgery. Since stopping chemo I'm a lot better but it has taken months so who knows. Other major issue was very dry hands, so important to moisturise lots, after washing hands etc. Another poster MaryAnnSingleton is on long term capecitabine but she isn't posting on the thread at the moment, she's had very bad hand and feet problems (dry skin, tingling etc.) but has been on it quite a while.

Lots of people assume tablet chemo is less potent than IV chemo, my nurse told me I was having 'mild' chemo but onc laughed and said no such thing as mild chemo. Some chemos are really harsh and most of them are IV, but tablet ones can be fairly strong too. Chemo in general just sucks!

However lots of people on the thread have carried on almost as normal while on chemo so it's definitely do-able, if you're lucky with side effects. Some people tolerate chemo better than others. Hopefully your mum will tolerate it well.

goodness so pleased you got a good night's sleep, I hope you managed to get some last night too? Tumours can be quite complicated. I can't remember who (sorry! Possibly kitkat?) but someone on the thread had a large breast tumour but then it turned out only a small part of it was cancerous. Good news that it's not a very aggressive cancer though. I knew my tumour was cancerous but they didn't know exactly how bad it was until they got it out and could see how far out of my bowel wall it had escaped and how many nodes etc. even the most advanced scans and imaging techniques can't compare to opening someone up and having a look/poke around unfortunately! Good that you've started to get a plan though, that should help feel more in control.

Waving to everyone xx