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Tamoxigang - 41 and counting

994 replies

KurriKurri · 20/08/2013 09:55

Morning all, new thread, croissants on trolley, and I'll put a brew on.

OP posts:
malteserzz · 08/09/2013 08:41

I'm still in bed gigs, ds gets himself up to watch tv and dh has just got up to make a sausage sandwich. He's still in love with his car Smile

Really it does get easier honestly, you kind of learn to live with it because you have to. Am I right in thinking you're on your own ? Might make it harder in the middle of the night if theres no one to talk to but if there's no one awake on this thread post in chat theres always someone up and people are very kind and willing to talk. I used to do that when I couldn't sleep.

Eco sorry you've had a bit of a setback too

I'm still doing ok day 4 of 3rd chemo but I'm sure I'm more tired this time. will try and get a bit of fresh air today

reallyreallyworried · 08/09/2013 09:44

Hi malt yes I am on my own. I work as a nanny, hence how I came on this site. I have a supportive family, which is nice. We have had some difficult times, but they have been VERY supportive since my diagnosis.

I feel a bit like I shouldn't be on here because your all mums, and sadly I am not! But you have all been so kind, and made me feel so welcome. So Thankyou for that!

Xxx

BetsyBoop · 08/09/2013 10:06

really some trashy tv and a Brew is the best thing for night time wobbles/wakefulness. It does take a while to adjust to the new "normal" (and tbh I'm still a way off yet) Go easy on yourself Smile

eco hope you are feeling better soon and it's a temp setback

malt the tiredness is cumulative isn't it? Dread to think how knackered we will be after 6....

Well we are off to collect new car shortly Smile . (hopes she doesn't prang it on the way home...!)

Gigondas · 08/09/2013 10:11

Don't feel like about being a mum - you are most welcome. Not everyone on here has kids so please don't let that put you off.

Glad your family are being supportive as that must help. Where do you live as wonder if Anyone is local to you?

topsyturner · 08/09/2013 10:22

Really let's get one thing straight !
You are absolutely right posting on here .
Doesn't matter if you are a mum or not .
Point in fact , this is called the tamoxifen thread . I'm not and never will be on tamoxifen . Some of our ladies don't have breast cancer , they have other types .

EVERYONE is welcome here .
This is the most non cliquey of all the mumsnet quiches Grin Wink

And to all the non sleeping , crying at the unfairness of it all , ladies out there .
It WILL get better .
I promise x

Shootingatpigeons · 08/09/2013 10:26

really I totally agree with gigs wise words. It is hard to believe in the early days but you will reach a point when you accept what has happened and can be happy again. It happened for me on a walk, I looked up at the sky and suddenly realised that I was no longer feeling scared, panicky etc. and could take pleasure from the world. I think getting out, going for a walk can help lift your mood. However it is really normal to find the middle of the night especially difficult, somehow everything is so much worse around 4 am. And you definitely need a good cry sometimes. In the longer term i found trying to take my thoughts to better places helped. I tried relaxation, tensing up every bit of the body and then releasing it focusing on each bit of the body in turn so first, fingers and toes, then arms and legs, then up through the body to the neck and finishing, most importantly with the jaw and forehead. I also focused on visions, mainly places I planned to go after chemo (planning those trips is good too) imagining myself on a beach, visiting temples, on a mountaintop, all of which I have realised except one ( which hopefully will happen one day but was delayed by my friend's mental illness not mine, there can always be more of life's shit down the line ) I really immersed myself in imagining the sand between my toes, the smell of mountain air etc. it is very personal what has meaning for you but we have had fun on here with visions that involve Damian Lewis and other orange men, some werdos even go for Peter Andre ........ I am a bit of a geek so I had an excellent Lord of the Rings one involving my team, Sean Bean, Orlando Bloom, Viigo whatsit and David Wenham ( may have to sack him after Top of the Lake ) etc slaughtering all the mishapen disorganised orcs / cancer cells. We are not great fans of the fighting analogies when you have Cancer but still nice to think of them being dramatically slaughtered and having all those nice men on my side Grin mas is a great expert on mindfulness, ridding your brain of the clutter of worries about the past and future and focusing on the moment, and I am sure can explain it better than me.

ecco sorry you have have had a setback, I do think that you recover from surgery quickly at first but it is the long slow achy stage that is most difficult, and it is easy to overdo it and take a couple of steps back.

malt ticking off the days now...

Betsy I agree with smee that you should keep challenging your dose, perhaps talk it through with a BCN, you should not have to feel so scared. The way they calculate the dose height * weight is very crude and they should calibrate it according to your body's ability to cope, and especially as you say it is a much higher dose than others on here, even just to make sure they have done the calculation properly and not put a wrong number down by mistake, it happens. My lovely Onc commented that the dose was probably OTT for me because although I am tallish, my legs are disproportionately long and so my poor shorter persons body was having to deal with a higher dose IYSWIM. May explain why the chemo never made it to my leg hair follicles Grin

I caught the end of the Women's Hour round up yesterday and a discussion of the Latest Tamoxifen story, it will be on iplayer, it was the last item. Interestingly a doctor was commenting that often there is a failure by time pressed doctors to fully understand the impact of long term side effects, and that is where BCNs can come in, trained to properly probe the reality, so they don't get misled by the drama queens and stoics. I assume that was in the context of women stopping taking Tamoxifen because of the side effects without talking it through properly with their doctors, because they don't feel they will be taken seriously? He added though that what women often don't realise is that there is a lot they can do to help with side effects, including hot flushes, including switching to other drugs or giving progesterone. They also had a couple of women on who had had bad side effects.

Had a lovely night out last night after DH and friend's husband went to the rugby. She had BC, chemo etc 17 years ago, and was my inspiration when I was diagnosed that I could get through and survive this. DHs were a waste of space though, something to do with the 10 beers consumed during the match.....

malteserzz · 08/09/2013 10:28

You are very welcome really hope you didn't think I was implying you weren't just think it must be harder if you've got no one to reassure you in the middle of the night x

Betsy drive carefully !

Agree this is a lovely group you're all fab Smile

Shootingatpigeons · 08/09/2013 10:32

really cross posted well not sure about whether we are a Mumsnet quiche Hmm topsy my be overegging it [ouch] but yes everyone is welcome here. Cancer doesn't discriminate so neither do we.

Shootingatpigeons · 08/09/2013 11:42

Women's Hour item is here www.bbc.co.uk/programmes/b039lmk4 at 29 mins

trice · 08/09/2013 12:00

Nearly at the end of cycle 5. Feeling a bit rubbish.

But the sky is blue and we are going out for dh's birthday lunch. I will try not to rain too much on his parade.

BetsyBoop · 08/09/2013 13:50

pigeons - that's interesting as although I'm tall my height is all in my legs and I have a "normal" size body length with a bit of a spare tyre I will speak to onc again before next cycle. Now I'm out the other side though, it's a bit like labour you are programmed to forget, perhaps it wasn't so bad, if I can get stronger painkillers for the first 48hrs that will definitely help. Hopefully if I can avoid an infection next time I won't feel so rough for so long either. Feeling WAY better today now ABs are doing their job. I think it didn't help that I was hoping for an easier time on tax after such a rough time on FEC, so mentally I wasn't fully ready for the full onslaught that is tax either.

Well picked up the new car and we've been for a good drive round, and I managed to get home safely without crashing! Envy my new car Envy. Just need to get a bit more used to reversing it on to the drive! Envy the rear parking sensors though!

BetsyBoop · 08/09/2013 13:58

Enjoy your lunch trice

I listened to the WH item too. At the moment I am determined to stick it out with the tamoxifen or whatever, for as long as they want me to, as I really feel getting rid of oestrogen is the best thing for me. We are quite lucky here it seems with BCNs, but every woman deserves the same support it shouldn't be a lottery based on where you live. I can understand why some women choose to stop if the SEs are dreadful and they don't feel supported and helped to find ways to cope Hmm

MaryAnnSingleton · 08/09/2013 14:23

good afternoon all, though it's horribly grey here.
I second or third what gig has said really - and oddly enough I am probably doing more,being more creative etc than before my secondary diagnosis - there is stuff to look forward to and a pretty normal life to be had.
Bought new clothes for T yesterday (without his presence- he didn't want to come !) and today must sort out his old stuff- 2 bags already stuffed with things for charity shop and recycling (have saved really nice stripy mini Boden hoodie for boy next door)
Meditation later - have chosen a reading (my turn).

malteserzz · 08/09/2013 15:10

Trice hope you've had a nice lunch
Mas enjoy the meditation, always sounds very soothing
Im like Betsy determined to take the tamoxifen or anything else that might help
Support here from bcn or anyone else has been pretty rubbish, everyone on here and family and friends has been my support. Keep seeing the McMillan advert with thr coffee mornings and thinking well they haven't done anything for me !
LGFB was very good wish there were more things like that

Gigondas · 08/09/2013 16:25

Another one with crap weather here-may have to change to my winter slippers at this rate. And it's blankets out up watch Pocahontas with big gig on sofa. I have to say as someone who has suffered a lot of Disney (and am trying to wean big gig off this and Barbie) it isn't a classic.

Trice hope you managed to enjoy lunch- I am feeling very jaded so am going to make real effort to get to sleep earlier and might even have a bath now I can.

Malt I did think about how crumby your experience has been - Bcn (I know some are busy but yours seem to have been AWOL), treatment and op wait- have you said anything? Talked to pals as I think the wait time especially was probably outside guidelines.

Gigondas · 08/09/2013 16:26

Doesn't t want to choose clothes? Must say dsc always let us buy his stuff...

Lilymaid · 08/09/2013 16:43

I'm also fully intending to take Tamoxifen as prescribed when I get to that stage of treatment. As DS2 has to take one 400mg tablet a day to keep his CML in remission I will do as he does and take my daily drug. He has some side effects, and some people with CML have to change the drug they used several times to get one that they can manage. For DS2 the biggest problem was his aversion to tablets in any form. However, needs must and he manages to swallow down the enormous tablet with a pint glass of water.

malteserzz · 08/09/2013 17:11

I don't even think I've got a named bcn gigs they just work as a team and not at the hospital where I'm having treatment now,it's not that I particularly need anything but would be nice to feel like somebody knew me as a person sometimes
I haven't complained but I will be pressing to get my op sorted ASAP after chemo as I dont want to be waiting around for ages
Disney sofa afternoon sounds good Smile

DiddyLady · 08/09/2013 17:28

On the advice of malteserzz I've come here to ask for advice.
I start 8 rounds of chemo and radiotherapy tomorrow. Tuesday is my chemo day so that will be the long one.
I'm just wondering if anyone has any tips to make the process more bearable. I've gone from the early days of diagnosis when I was terrified and convinced I was going to die, to now being much calmer about the future. However over the past couple of days I've become very nervous about the treatment and the side effects.
I'm not really sure what I should take with me. I've bought leggings and loose tops to wear any excuse to shop Grin
Will I really be as ill as people say?. I've got loads of fantastic supportive people around me but still have 5 dc at home to look after. DH has been truly amazing in his support but his employers have been complete twats and refused any support at all. He works shifts and it would have been so easy for them to work his shifts around my treatment but they refused.

Any advice would be much appreciated. Thank you ladies.

notJenkins · 08/09/2013 18:06

Hi diddy sorry I can't help as I have not had chemo but I am sure someone will be along soon who has.

malt my thyroid nurse is useless and I could not get any support from her. I rang her when I was really struggling during my treatment and she said I could stop the treatment if I could not cope. Very helpful. Seems some specialist nurses are better at support than others and we got the crap ones.

MaryAnnSingleton · 08/09/2013 18:09

hi diddy and welcome - am glad that malt pointed you in our direction !
I'm on daily oral chemo so don't have experience of being infused with drugs but malt and others can advise.
gig - T totally disinterested in buying clothes -though am sure he'd not want to be seen in anything awful, so we just pick stuff we like ! Am quite keen not to make him into a clone of all the other teens I see on their way to college (he has a few Hollister tops) but otherwise it's Gap stuff.
malt yes,you seem to have been unlucky in your team- I guess compared to my experiences it feels a bit lacking. I know all the bcns and of course have my special one and the oncs. are all v involved and friendly and reception team v nice. I'm sorry because my bcn has been such a huge help and it does make a difference.

GoodbyeRubyTuesday · 08/09/2013 18:32

Hello Diddy and welcome, although sorry you've had to join us. Do you know what chemo you're having? Someone has probably had the same one so will be able to advise better on specific side effects.

I took slippers and a little blanket, a book, puzzle book, snacks etc. as mine took up to 8 hours so I made myself quite at home in the chemo suite! :) hopefully yours won't take so long but you'll still probably want a book or something to entertain you. Unless you've got a PICC line or something, you'll probably have a cannula in the back of your hand so you'll only be able to use one hand so things like knitting are unfortunately not possible, I did try but nurse stopped me as it was disrupting flow.

Some people are very ill with the chemo and others have no side effects at all, mot are somewhere in between. Make sure you drink plenty and have lots of appetising snacks in case you have nausea or taste changes or sore mouth and don't want to eat much. You will probably be given various anti sickness medications to take but you can always ask for more if you're struggling.

Make sure you've got plenty of paracetamol in stock, and if possibles some meals in the freezer and a few trusted takeaway menus to hand!

really I don't have children, nor do I work with them, and I don't have breast cancer either! I started posting on the Infertility board I think it was when I was having my eggs frozen then I found this thread and the others have made me so welcome and provided me with so much support since I joined. I consider each and every one of you a friend :)

amber I hope you and Mr Amber are feeling better Flowers

jchoc YAY! So pleased for you :)

Waving to everyone else. Been a bit of a busy weekend as went to a family party yesterday and also had relative staying over. Now I'm snuggled up in front of our first fire of the season, listening to the rain outside, just lovely :)

malteserzz · 08/09/2013 18:32

I'll be ok just having a moan Smile
Diddy have they told you what symptoms to look out for as a problem, I have a 24 hour helpline to ring if I'm worried about anything and been told I must ring ASAP if I feel very unwell or temp goes over 38

I was cold in the chemo unit this week and forgot to take a jumper which was a bit silly

Will your chemo cause hair loss ? I've been using the cold cap and still have some hair but it's very thin so I wear a wig when I go out now

I find that I have the chemo on Thursday and then from the following Monday to Friday im feeling tired and groggy but the next week and a half back to normal again but it seems it's different for everyone. I imagine having radio at the same time will make you tired

malteserzz · 08/09/2013 18:35

Hi ruby cross posted, party sounds good, and fire and rain sounds lovely glad you're feeling better Smile

GoodbyeRubyTuesday · 08/09/2013 18:37

Oops cross posted with MAS and nj, it took me about half an hour to write that post Confused my head is throbbing.

nj forgot to say sorry you're feeling crap already, hopefully the house stuff will go smoothly as definitely don't need house stress at the same time