*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]

Thanks Runrunruby, sounds like you have been through similar. I don't know what the drug is yet. She is still learning to manage the stoma so is dreading any d & v most. They have said she can stop the chemo if it becomes too much though and at least she will be seeing hcps most days while taking it .

LIZS sounds similar, if it's bowel cancer then it's quite likely to be capecitabine. I only had a temporary stoma, which I had reversed before chemo, but in some ways I think it would've been easier to have the stoma during chemo as I think I would've got more sleep. I was back and forth to the bathroom a lot, especially at night. But I can imagine it would be very daunting when only just getting used to a stoma. There are fabulous anti-sickness medications so they should be able to manage nausea well - there are nine different types to choose from so they will find something that works. They might not completely eliminate nausea all the time but will certainly make it's easier to cope with. Diarrhoea is slightly harder to manage but there are several medications to try for that too - does she have any colon left? If so that responds better to the drugs than the small bowel so that will help too. My team described me as a disaster during chemo but it does mean I might be able to offer advice on any problems your mum encounters! So feel free to message me or post here during her chemo as well :)

Does she have a good stoma nurse or team of nurses? Also has she got leaflets with dietary advice etc. there are some good tips for foods to try that will slow/thicken things, foods that cause wind etc. I think they're available online so I can try and find links if you think they might be of use

Unfortunately a dietician might not be able to help. Much as it really is trial and error with a stoma. They respond so differently to foods if she can tolerate Ensure drinks then they might help her energy levels. Also Diarolyte if she gets dehydrated. And some of the leaflets advise adding a little salt to food to replace any lost - I think that's a trial and error thing too, I now notice if I'm low on salt and have a salty snack.

Sorry that's a massively long post

Swimming during chemo??

DH and I are staying in a fancy hotel Thurs & Fri. It has lovely leisure center. Would I be foolish to swim, go in jacuzzi, etc 12 days after my chemo? I got nulasta injection this time, so hopefully white blood cells not to bad this cycle. And I currently feel very well.

Thank you , that is very helpful . Her stoma nurse and surgeon are based at a different hospital to the oncologist which makes things a bit tricky but have suggested she speak to stoma nurse again before treatment starts (end next week) and maybe has another visit. Yes she has the diet sheet and has tried to expand the range of foods over past weeks, mainly as it is pretty dull to eat ! When she was poorly she had Fortisips, is that similar to Ensure ? She has lost a fair length of bowel (2 ops) and think stoma is permanent but has a reasonable amount left so hopefully that will help.

Had a Google and Fortisips looks similar to Ensure, I'm sure that will help keep her strength up during chemo :) it's so boring with the food isn't it! I went through a phase of just eating mashed potato and macaroni cheese. Unfortunately she might find she has to go backwards a bit to very simple foods during chemo to try and keep the diarrhoea at bay - they'll have a rule about how bad it can get before she has to stop the tablets.

mom I would've if I could, but my onc assured me that I could do whatever I wanted during chemo. Perhaps avoid jacuzzi as they are quite germy. MAS was allowed to swim during chemo but hers doesn't have immune effects. Could you phone your unit and ask?

Hi Ruby - hope you are well and enjoying Christmaas at home - you sound much more cheery then you did a few months ago .
I watched the 2 series of Covert Affairs that were available on Netflix and thoroughly enjoyed them so thanks for the recommendation. I am working through Breaking Bad at the moment but my DH is also hooked now so I have to wait until he is around to watch that one.

Goodness - yes, Ruby is correct I had an MRI, CT, ultrasound, mammogram, multiple biospsies etc. and was told I had a 6cm cancerous tumour but when it didn't respond to chemo I had a mx and the pathology results showed that it was actually only 1.3cm and the rest of the mass was pre-cancerous. I was very suprised to find that with all the scans and bisopsies they still don't know everything.

Great news Malt - what a load of nodes to have removed though - was the 1 node they biopsied the only positive one then? Still you can move on now and like you say have a great time tonight .

and hello to everyone else - sorry I've been absent but i felt a bit depressed on Christmas Eve (no idea why) and sort of stopped posting. (have been on facebook though).
Had a nice Christmas though and have cheered up now .
Sadly my eyebrows disappeared over Christmas which annoyed me as it was 4 weeks since my final chemo and I had thought I had got away with it - I know it is insignificant really but I just feel it is unfair to happen now (arm hair has also suddenly gone).

No idea what is happening with my head hair - it is about 1.5 to 2 inches long and sticking up straight but very very thin - looks like what I've got is going to stay but there is no sign of anything new yet.

And for those of you that remember the trouble I have had getting a GP appointment (well I never actually succeeded) - I had to go yesterday to book the appt to have my mirena coil removed (always going to be a challenge as needs a double appt and not all the GPs can do it) - so in desperation I took my wig off before I went in and guess what ...... magically there were lots of appts available and I was even given a choice of dates. Still at least I know what to do in the future .

hi all and hello kitkat, I wondered where you had been and glad the blues are subsiding.

Wishing everyone a good time tonight whatever you are doing and especially to malt who clearly isn't going to remember much of it

Let's hope 2014 brings us all good things and, at the risk of sounding soppy, a huge thank you to all of you for holding my hand through some very difficult times the last few months, it really has made a positive difference to me.

Off to do.housework now - I know how to live it up!

Mom the advice is not to swim during chemo because of the germs but obviously it's up to you. Nice hotel sounds lovely have fun !

Kitkat good to hear from you, sorry about your eyebrows are you drawing them in ? I have a powder I use, sometimes they look better than others ! I have stencils when I can be bothered !
Yes when I had my lumpectomy I had a sentinel node biopsy which was positive but must have not got any further. I thought 26 nodes was a lot too but the consultant didn't seem to think so, they must be tiny to fit in there !
I'm using fast shampoo most days to try and speed up the growth of my hair.

Can't believe how bad your gp is for getting appointments

Hi marshy x posted with you. Happy new year !

Malt - I'm not drawing my eyebrows in as I wear glasses so it's not at all obvious (only to me) and I'm worried I could end up looking like a drag queen . Is your shampoo working do you think?

My GP has a notice up now saying there will be changes to the surgery/process and it will be more difficult to get an appt in the future and they will also stop doing phone consultations - they are blaming the aging population in our town. There are 2 other surgeries (one in the same building) so I am thinking of changing - the only thing that is stopping me at the moment is that if you can get to see a Dr they are really nice.

Is anybody on or finished chemo struggling with their eye sight? Mine is a nightmare at the moment - I am finding reading difficult and have to take my glasses off to focus properly. I don't know whether it is chemo (or indeed diabetes) related or just changes due to old age . I was told not to have my eyes tested during chemo as it does affect your eyesight but does anyone know how long that lasts? I don't want to fork out for expensive glasses and find they are not correct in a few months time.

Hi ladies, it's me again.
My mum sent me here as I'm having such a shit few days.
Basically I got a date for my surgery which is Friday! Friday. So no time to digest it all. And I did a stupid thing and gggggoogled!
It worries me that an induced menopause can apparently cause problems such as dementia heart attack and premature death so I'm now shitting myself.
I will be having some hrt to counteract this but obviously that's not without risk.
I am literally demented with worry and complete fucking anger at yet again having to face big choices and having bits if my body hacked off.
All the feelings I had before are back and I'm scared.
Dh is working today until 11pm so I'm on my own with my worries.
I need the oophranectomy-sp? As I'm brca1 but it doesn't stop me feeling like shit.
Sorry for mememe post but I wonder if anyone can offer me some reassurance and a good kick up the arse - feeble grin,

foofoo - good luck with your chemo and cold cap, woohooo for last one :)

Kitkat - I've been struggling with my eyes since I started chemo - but then I have dodgy eyes anyway - They have been a bit better during the day for the last few weeks (so maybe it was the chemo) - but I still struggle to focus when I'm tired in the evening (probably old age...) I'm sure others have posted in the past that their eyes went a bit weird during and after chemo.

malt - I think anything from 10-30 nodes is regarded as "normal", some, people just have more than others :) Fingers crossed our nodes did a good job of catching all those dodgy cells, and any that managed to escape the chemo has finished off. :) It will be worth checking at your rads appointment if they intend to zap your armpits. As I only had one dodgy node they aren't doing mine. (Rads after auxillary clearance ups your lymphoedema risk quite a bit)

I've just got to the stage when I don't need to draw my eyebrows in any more :) Hair is still very slow growing...inspite of my Fast shampoo

goodness - as has been said they will only know for sure when they get it all out and look at it cell by cell. Biospies/scans and Dr's intuition are usually fairly accurate, but the pathology lab after the op is the definitive answer. Waiting sucks!

to everyone else.

Happy New Year to one any all, let's hope it's a healthy one for all of us.

Thanks Betsy - I guess I need to be a bit more patient on the eye front then. I am planning to go back work early Feb so hope they improve by then.
I will go and check out the Fast shampoo next

kitkat my last chemo was in July and my eyes still have the occasional blip. I had a couple of weeks in November when they were really bad, I even ordered a book about how to improve my eyesight, and then they got better. Apparently it's the steroids during chemo that cause the most trouble and they can stay in your eye fluid for a long time (possibly a year but I can't remember )

Blimey Ruby I didn't know that's what it was. I have been proven to be very sensitive to steroids so it would make sense that i'm struggling.

As we say Cheerio to 2013, I wanted to thank you all for lots of hand-holding, reassurance and lots of . Wishing you all a Happy and Healthy 2014.

Ledkr - Sorry, I really don't know much about induced menopause, hopefully there will be some wise ladies along soon to help. I remember signing my consent form for just a port-a-cath operation and the list of things that could go wrong seemed endless and quite scary. I know the medical profession is now obliged to tell us of every possible risk rather than pat us on the head and tell us everything is going to be alright, that said your consultant should be able to give you stats so you know how likely each of these outcomes are. Are you able to get in touch with him prior to the operation so that he can put your mind at rest?

kitkat glad you are feeling a bt better, little things like eyebrows may seem small, but its often those small things that tip one over the edge. Saying that they will grow back isn't really much solace at this time.

My eyesight has been a bit dodgy too, and t was never good to start with.

ledkr I'm on my own too as DP at work too, so will hold your hand and sit on the box for you. Sorry brain so addled cannot remember what the word fr the box is! And I have not even had a drink

Feeling (too ) happy and almost.. excited. I met a wonderful and highly reputed consultant today. I now feel I'm in safe hands and the best possible care. I just have confidence in him. I'm unsettled by this 'inconclusive' biopsy business but will just have to get used to it until after the op. About a month or so. Having a 1.5 hour MRI and a CT scan on Monday. They want to check elsewhere too. I'm hoping that this is just routine.

It is routine for spine ops goodness- expect x rays too and possibly another MRI etc nearer time if want double check. They use all of it to plan the op.

So glad you feel better- I was rushed in for my first spinal op as spotted issue on my MRI. It was like a bad episode of greys anatomy but once I saw actual surgeon I felt better as he was so straight but reassuring .

Happy new year all. Had busy day sorting junk (10 bags to charity) and then lovely ballet with big gig.

Ledkr hugs and . Dr google is rubbish -the risks associated with your surgery are much lower so please don't fret.

Will sit on box as long as you need.

goodness glad u are feeling confident in your surgeon and a bit less worried.
Thanks all for your best wishes but can I ask why people are sitting on my box?

Happy new year.

It's the paranoia box to put all your worries etc in. Bit naff bit idea seems to help.

Hope bloody fireworks don't wake kids.

ledkr it's the paranoia box - it's somewhere to put worries and then you can try and ignore them - people sit on the lid of the box to weigh it down so they can't escape

I shall take my turn on it. I am very dense, anaesthetists had me re-weighed several times as they didn't believe I could really be so heavy so no worries will be getting past me!

Happy New Year all, I hope it brings good news, successful surgeries and health and happiness all round xx

Oops sorry gigs cross posted as my post only just sent site is being a bit weird at the mo. Anyway, night all, happy New year x

Happy new year! I loved the fireworks in the TV, they get better every year. Dcs got very silly staying up late, they do make me laugh. A lovely start to a lovely fresh year. Let's all have a good one this time.