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Tamoxifen 34 *the power of Sauron*

989 replies

MaryAnnSingleton · 29/03/2013 18:35

new thread !!!

OP posts:
Gigondas · 15/04/2013 14:46

Hi poshaubrey- I have mets too (but not bc ) so sending you gentle hugs for being in club.

My cousin who was dx when her twins were 10 hasn't had them in boarding school. I think having them near and talking through what Trestment is (she is still here despite very grim prognosis with ovarian cancer 5 years on) helped.

I think the simple answer is whatever you do , you worry about the kids (I know it is my big issue and mine are very young).

Reading your post , I would be inclined not to do boarding school but maybe build some support networks in. Your older dc will have their own issues so not so much them but are their any friends, family or godparent types who can help share the load if you are having treatment. This is my route as wanted an extended family for my dc.

Please stick around if want to- I know it feels like all down hill but it need not be. One of our other met folks had gone into spontaneous remission, mas is doing well on chemo and my mets are shrinking even tho I am about to have big op to repair damage.

And you lot can stop encouraging the skunk pet!!!

Hope something comes of the book fair mas though not sure i can take another joke Book yet.

PoshAubrey · 15/04/2013 16:04

Smee, KK, Mas and Gig, thank you so much for replying. You've confirmed what I was instinctively feeling. And who knows I might not hear of any further progression this week at all. I want to carry on seeing small ds playing in the garden with his friends, riding his bike, and filling his pockets with twigs and interesting pebbles. God it's so UNFAIR !

One older Ds did weekly boarding for a while but we're not really a 'boarding school' family. And it wouldn't be till youngest Ds is 11 or 13. I'm not currently on chemo (letrozole only) but might well be again soon. Had FEC/Tax in 2009 when he was only 5: he has a hazy memory of when I was bald as an egg ! At that time my friends were wonderful and scooped him and the others up in a kind rota of school runs, childcare etc. I'm saying nothing to anyone just yet because I feel so well physically. But I know they'll be there when I need them. By the way, those of you with mets, how did you tell friends ? How did they take the news ? I found others' reactions sometimes quite hard to deal with first time around - in a good way - because they were so upset.

smee · 15/04/2013 16:23

Posh I (so far!) am free of mets, so hard to say how I'd feel, but I'd say don't rush to tell people until you're ready to. I found telling people by e-mail a lot easier than face to face or phone calls.. I always said call me once you've taken this in, but it avoided that horrible ickiness, when people just don't know what to say. Very close friends I told straight away, but others I'd say can easily wait until you feel ready. What day's your appointment. Pull up a chair and let us distract you. Smile

MaryAnnSingleton · 15/04/2013 16:27

PoshAubrey I think the building up of a home network of family and friends is a v good idea. Most friends knew I was off to have a scan having had an x ray for v acute chest pain and I think were quite shocked by this diagnosis - lots of people don't understand that it's not curable at this stage and are not altogether aware of how breast cancer can spread to other organs - I only explain if they ask. If they do ask I give the facts straight up,maybe witholding the prognosis bit. I can't quite believe it myself as I am well and everyone keeps saying 'you look so well' etc etc.

OP posts:
Gigondas · 15/04/2013 16:31

I echo mas And smee advice. I told people by email and text to let it soak in. I also only went into details with my closest friends or those who asked. I have had a shed load of therapy (was in therapy before) and counselling to help process it.

You do come to live with the uncertainty better- I was absolutely floored when got met dx but these people here picked me up and topsy esp had loads of wise words to help (snogs topsy carefully so as not to muck up the swish new hair do).

I also find others reactions hard for reasons you say- and also cos there is a lot of projecting.

Am getting Brew and Biscuit for MRI. Those in themselves are a right old ordeal.

Kids home- no skunks yet. Got lot of admin and packing done .

AshokanFarewell · 15/04/2013 17:29

Posh welcome back to the thread but sorry you have to be here too! I really hope there's been no further progression in the next scan. And I'm glad you've come to a conclusion about your DS. I don't have any children but I'm sure that he would rather be with you, even if/when you have to have treatment. He sounds like a lovely boy :) building a support network sounds like a good idea.

I don't have mets, touch wood, but when I got diagnosed I got my mum to ring round all the family, then I followed up with an email with the outline of my treatment plan etc in case it hadn't sunk in over the phone. Then I texted or emailed/sent Facebook messages to my friends. I liked emailing because I am very socially awkward and I didn't want to have to try and comfort people! :)

KK I started cycle 4 on Wednesday, tablets only again. I'll have the infusion at 50% usual level next cycle. I've emailed my bowel nurse to request an appointment with him this week, the booking people won't give appointments unless it's on the referral sheet from the last appointment which is fair enough, kind of, but they are very inflexible even when last time I explained I wanted to move dates as I was having a surgical procedure! Hmm

My dad isn't well today, nothing too serious, just a bit run down I think from all the stress I've been causing! Anyway that meant I was the well person in the household so I've been out running a few errands. I've got a friend visiting this evening and I'm working on a report for a voluntary organisation. Oh and I flirted with the checkout guy in the supermarket Wink I feel like a bit more human today and it is lovely! Grin

I have chocolate eclairs that I might be tempted to add to the trolley...

Copthallresident · 15/04/2013 17:35

posh It's a bugger but this lot prove you can get on with life in spite of it. I do have some experience of a friends illness and how her DCs coped which might help. Her 9 year old, undoubtedly found her final illness very hard, and was traumatised at the time, BUT we kept life as normal as possible, and provided plenty of opportunities to deal with it in her own way (children don't deal with these things in the way society dictates, so it comes out in different ways at different times, and you have to be careful not to have any expectations of how they "should" be reacting, we were lucky we had the support of a charity, the rainbow trust, who advised us on the best way to handle things) and she now says 15 years on that it is important to her that she was there for every last minute she could spend with her mother. Her brother even more so cherishes every memory, he was much younger and though he now a very sporty laddy lad IYSWIM he is quite open about talking about his emotions in relation to losing his mum (DDs tease him that he uses it to enhance his status as a babe magnet Wink) We have lost two close friends and so know two sets of children who have experienced that trauma, the other children were 12 and 10 and I would say that in both cases, though awful to see them put through it at the time, it has in the long run made them stronger and more resilient, and they are all achievers.

In the case of the 12 and 10 year olds I was absolutely in admiration of the Head and Deputy Head of their private Day/Boarding School (don't want to out too much) who were quite exceptional in the way that they stepped into the role of father figure, encouraging them and building their esteem. However even though the DCs loved school, when offered a chance to board there they refused because they did not want to leave the family home, the memories were too important to them. I have acted as a Guardian to a few expat DCs at Boarding Schools and sadly I do not think you would be sure to find that sort of exceptional pastoral care everywhere. The 9 year olds school made a fuss and picked her out for special sympathy and she absolutely hated that.

However at the end of the day there are certainly some DCs who thrive at the right Boarding School, and only you can know which your son is . I am absolutely sure it would not have been right for either of my DDs .

I hope this helps.

Ash Yes those medical letters are horrible. As I have moved around I have had a few referral letters written and each time it rakes it all up, especially as even now they insist on saying I am in remission which seems very unfair because my chances of dying of BC are actually less than the average woman. I had one lymph node involved, which really pissed me off at the time because it meant chemo but maybe that wasn't such a bad thing? I have friends who had 7 involved and have had no recurrence.

gigs Will be here for all stages of bionification, just make sure the lego is Star Wars, or do they do a soft rock anthem lego? Ha! Of course they do en.wikipedia.org/wiki/File:Lego_Rock_Band.jpg

I found some of the comedy audio cds quite good, Fawlty Towers is still very funny even without the physical comedy, in fact makes you realise how sharp the dialogue is.

NJ I was quite worried that I didn't get paranoid and depressed when my chemo finished, as all my friends hit a wall but then the joys of Tamoxifen awaited.

smee Welcome back from up the jungle, we were hopeless at the guessing game

Barcelona was great fun. Dh was compete dick at times but also fun at others. I have the gorgeous breakfast croissants with chocolate and candied orange peel for the trolley as well as loads of Cava for when it is Wine O clock ... but this has turned into a marathon post and I'm sure everyone is asleep......

MaryAnnSingleton · 15/04/2013 18:29

copt glad that Barcelona was fun and the food treats yum...
gig just thought of David Sedaris reading his stuff...I do love his delivery of his essays.
Grin

OP posts:
PoshAubrey · 15/04/2013 18:40

You are all marvellous - we're all going through hell, yet you've paused to bouy me up. I feel a bit better already. You know how it is when those med appointments come round-hard sometimes to shake off the blues. I'm sorry to Go On. It's so hard thinking about what's happened. Spring is here, the sun is shining, everything's growing and yet this disease is hanging over.

I'll be back soon, and hope to have reassuring news (and maybe a bad joke or two).

metimenowplease · 15/04/2013 19:03

PoshAubrey, I haven't anything useful to add re your questions, but just want to say you sound amazingly strong and calm, and if the boarding school decision isn't for another couple of years, I'm sure the right solution will become clear to you by then, depending on your DS's personality etc as he grows up a little more. I had BC in 2007. Sending you ((hugs))

graciesmall09 · 15/04/2013 19:18

posh sorry you have had to join us again. I have young children and I just hate putting them through this but I am like mas in that I don't think I could cope with them away from me Sad but my children are all home birds and wouldn't want to be away but each child is different and only you knows your son. I hope you get some better news at your next appointment.

gigs huge good luck wishes (in case I don't get on again) for Thursday. Sending you lots of hugs and spare lego if required.

kurri hope you manage to get a GP appointment soon. Some of our receptionists are lovely, we have one who is an ogre and DH has made a few complaints.

My friend's dad was diagnosed with liver cancer 3 weeks ago after complaining of stomach pain and they took him to A/E. He has gone downhill so quickly, poor man. So I have my friend's little daughter staying overnight as they have been told to stay. I hate this disease Sad.

Waving and thinking of you all. Sorry I'm not about much but you are very much in my mind.

notJenkins · 15/04/2013 19:21

Stopping by to say hello to posh welcome back to the thread that no one wanted to join and no one can leave Grin. I can't offer any more advice than you have already had but we will keep you company and cheer you up along the way......
I told people of my dx by text and FB messages too. I could not do the face to face thing at all. You need to do what works for you.
I have found this thread a lifeline and don't know how I would have coped without it. I accidentally hid the thread once and almost had a panic attack when I could not find it !

I filled in my HADs questionnaire today. The letter I got from the hospital speaks of cancer patients needing psychological support but does not actually seem to offer any concrete psychological support apart form 'speaking to your nurse' which I don't want to do. She will be at my onc appointment next week so I will ask then if they offer counselling.
I don't think my friends or family realise for the next scan I need to go horribly hypothyroid for a month so it is quite debilitating and daunting. They all seem to think I am over it.

topsyturner · 15/04/2013 19:51

Hi Posh
I was diagnosed with BC with lung secondaries 2 years ago , and give 2/3 years to live .
Bizarrely my lung secondaries have recently gone into remission .
We don't know how long for , but taking it as a miracle for now Grin

I have a 10 year old DD and a 13 year old DS .
I have never told them I was terminal , I told them all about the cancer and the treatment . But , so far , I haven't needed to have the conversation with them about mortality .
And I wouldn't just yet anyway , I know of too many women living with a secondary diagnosis for far more years than oncologists thought they would !

Do you mind me asking what and where your secondaries are ?

Saw some lovely pics on Facebook Cop , the trip looked fab !

Gigondas · 15/04/2013 19:58

Waves at me time.

Pre appointment tension is the absolute pits- it does for your sanity, sends your anxiety sky High and even if its ok, you still feel flat.

Copthall- very wise post and I love the Lego people. Sorry that dh still being an arse but fb photos look amazing.

amberlight · 15/04/2013 20:50

Posh, if a met is only in one major place, the odds of beating it with the latest stuff are 8 in 10. No, honest. With things like the targeted therapies, the new 'surgery and zap with cyberknife' approaches, etc, most people with a single met go on to live for a loooong time. Researched it via the science papers fairly recently. It's no guarantee, but I'm assuming your onc and surgeon will be more aware of the research than I am and will already be formulating your cunning plans?Meantime, you'll want your bedroom to be darker than a dark thing at night....and you'll want to take Vit D, omega 3 oils, lactoferrin, curcumin etc as supplements. All slow it down/stop it in its tracks in many cases. Talk to team about this but nil desperandum. The science is catching up with this stuff.

MaryAnnSingleton · 15/04/2013 22:34

amber does that mean a single met somewhere like a lung, or a number of mets in just 1 organ ?
Am off to bed but will look on ipad for copt's pictures....

OP posts:
smee · 16/04/2013 09:58

Where is everyone? Brew to tempt you out, plus thick toast with honey? Working here. Hope everyone's well. Smile

topsyturner · 16/04/2013 10:09

Mmmmm toast .....

Gigondas · 16/04/2013 10:20

Am good but mini gig was up at 3.30 -5 then big gig got up... So Brew good.

Friend coming round with her ds to play with big gig then lunch out and shopping later.

smee · 16/04/2013 10:20

I knew it would work. Grin

How's the day, Topsy?

PoshAubrey · 16/04/2013 10:38

Topsy that's brilliant ! Long may you have NED. The met was on my cervix - I had a bleed which they looked into. Removed by hysteroscopy. I was all for whipping the lot out but was told no (ovaries gone in 2011 hence alarm at the bleeding).
Amber I've been reading a bit too. I'll ask more this week. last Dec/Jan DHand I were very shocked. All the onc said then was I'd start on letrozole and they'd hold fire on chemo, rads, newer therapies etc. Trouble is, rads in that area could be complicated. I take all of those supplements except lactoferrin, though I've heard of it too. Will do more reading. I've bought an 'old lady' pill box with all the rattly pills neatly ordered; I take a probiotic too and some calcium supplements which are best spaced through the day.

Onward and upward ! Much love to all of you.

smee · 16/04/2013 10:51

x-posted, Gig. 3.30am's a bit of a dark time to be woken. You must need Brew

Posh, that does sound v.unusual, though take heart from our resident stats guru, Amber as she is most wise. I had a hysteroscopy last year, though was lucky as mine was clear. Seem to remember it was v.ouchy.. How curious they don't want to do hysterectomy. That would have been my natural reaction too. All you can do is ask lots and then trust them. Coincidentally, I'm about to start on letrozole. Am switching from Tamoxifen due to treatment pushing me past menopause. We'll have to compare aches..

topsyturner · 16/04/2013 11:07

Off out to lunch shortly with HND
Then the bank and the wool shop .

Tried to do my hair like my friends did it at the weekend , but just succeeded in looking deranged Grin

topsyturner · 16/04/2013 11:11

Posh I would love to have my entire undercarriage and related internal organs whipped out !
I have finished with them , and they're more trouble than they're worth as far as I'm concerned Smile
But yes , I would be asking qs about what they are planning to do treatment wise .

Have you gone back to bed Gigs ?

topsyturner · 16/04/2013 11:11

Any more toast Smee ???