*TAMOXIFEN* the 5th

[MaryAnnSingleton]

in case we forget and find ourselves at 1000 - here's a fresh new thread !

Purplefish - I'm sorry to hear your mum has to have surgery and chemo. Even if she is saying little she will hugely value your support. As KK said its a question of taking one step at a time now. In my experience the surgery leaves you quite tired so she'll need to take things easy and rest afterwards. I was unlucky and got an infection but if you don't have that, then the other issue can be quite a painful arm afterwards due to nerves being cut. This does vary between individuals - anyway, if she does have pain please reassure her that it does go away! Mine took 5-6 weeks but others have been quicker. It wasn't terrible and normal painkillers did the trick for me.

Hope everyone else has a good week-end.

purplefish, SR and Kurri are right in every way, so won't repeat, but on a slightly different tack thought this might help. I had a mastectomy and nodes removed in April and am now having chemo. But today have been up since 7am, made a big family breakfast, walked two miles with my parents and son to a cafe through the parks, then back again. Made lunch and am now doing some work. I had my 4th chemo ten days ago. Admittedly I am pretty exhausted and tonight will probably collapse in a heap. I've had points during chemo when I've been quite ill, and also days when mentally I feel very down too. It would be wrong to say that doesn't happen, but what I'm trying to show is even though it's a slog you can still do things. Thought it might help you / maybe your mum too, to hear that. I know when I was diagnosed I was clueless and imagined I might be bed ridden for 6 months .

Oh me too Smee!! In fact this site was the first inkling I got that maybe life wasnt going to be all cancer treatment ad nauseam (literally and metaphorically) for the forseeable future. Purplefish, I had a wide local excision of breast lump on April 2nd, nodes clear but high grade malignancy and chemo started May 11. Didn't find the first few as hard as I had thought, tho lots of lovely people doing my cooking and cleaning for me in chemo week, and i did nothing but eat and sleep for few days after. Initially just took me 3 days to get over but last 2 cycles I am finding that I am pretty tired quite a lot of the time. Having said that, in between chemos i have been busy: I have been to Italy for a fortnight, London for 2 days, and 2 separate trips for several days to south of Ireland (I live in N Ireland so no flights needed there but long car journeys, which are fine if someone else driving!). I am not such a prolific gardener as my MN pals but you can see from all the posts that, while it's important to be sensible and rest when your mum needs to, most of the time is not spent in a horizontal position, far from it! I was also really afraid of losing my hair, but found that the anticipation of losing it, and the falling out itself, was FAR worse than actually being shaved. NHS wigs are pretty good, and most not obviously wigs; indeed the whole NHS is so much better at this business (not just the treatment, but all the support stuff that goes with it) than it was even a decade ago. And whenever she gets there I will tell her what to do about eyebrows, have it cracked now :)

But that is way ahead. For now, just being there for her is important, as you are doing. It is such a mind game too, or so i found anyway. Look after yourself too, make sure to share the emotional load if you have siblings.

Thanks everyone, you are amazing! This certainly helps me and will in turn help my mum as I will be so much better informed on how she will be feeling and how to support her.

Cupcakes, the hair thing isn't bothering her so much as the eyebrows and lashes I think, but if there is a solution to that, then fantastic!

She is definately taking one thing at a time, and so am I. i think a couple of my brothers are finding it difficult, but I have urged them not to be too maudlin around her...I don't think she needs that.

The toehr thing she mentioned was about telling people. My nan had lots of visitors ie family the other day and mum said she just really didn't feel like telling them all. I suggested that it was entirely up to her when and if she told people (she says she couldn't cope with the constant 'are you ok's) I said obviously work would need to be informed so that they are understanding about when she has surgery and chemo, but other than that, she should choose when to tell people.

am back- have been up to Notts for a family wedding - will try to catch up with all the news - lovely to see lalaa's post (will have the pleasure of lalaa's dd's company next week !) and hello again to pranma. Purplefish - will read back to see what's happening with your mum...

pranma - will be thinking of you xxx and also purplefish's mum - sorry so brief only have a ton of things to catch up on. Missed tyou all anyway :-)

I think some chemo regimes might be different, Purplefish, but with mine brows and eyelashes didn't completely go till well into it, much later than head hair. (I have had 5 out of 6 cycles of FEC, 6 weeks of rads to follow, how about you, SR and Smee, headed for rads soon also?) Solutions are cosmetic of course. Have used false eyelashes for a party and they have to be a strip of pretty fine lashes, as both single lashes and heavy ones need you to have your own lashes to glue onto! Eyebrows, read back to hear about Browzings, I think they're great esp with pencil on top as well, last all day and look good. If your mum's big concern is with brows n lashes, her cancer centre will refer her to a centre where she can sign up for a makeup session which I believe is great not least becos u get loads of good freebies! Very long waiting list (where I am anyway) and I didn't get round to going on it and couldn't be bothered now, think have it worked out, and I gather they grow back quick enough after chemo finishes. I know I look a bit tired with no lashes (I was fond of mascara) but have got a bit past caring quite as much as I did. And falsies work great for a special occasion. (I am too hamfisted to put them on myself or I might use them more often, maybe you or your mum are a dab hand with them?!)

Whom to tell and how quickly is a very personal thing. I got my close friends to tell everyone else for me asap, not least as I knew it would get round on the jungle drums very quickly anyway and I didn't want people avoiding me or the subject. Worked well for me I think, it was always the first topic of conversation at the start but it got boring so people eventually moved on to talking about normal stuff, hurray. If I hadn't been upfront I would have always felt a bit elephant in the room with everyone. But I guess others cope better not talking about it so let your mum decide that one.

I feel for you and her both, it's a very tough one to get you head around at the start. But get her over the surgery first, and tell her the chemo will be manageable, cross that bridge when she comes to it. I also had a few surgical complications including cut nerves leading to numb armpit / back of arm which is not right yet but doesn't bother me, and also very rare wound problems which I won't bore you with, unlikely to bother your mum.

Hang in there. We are all here for you and her.

Purplefish, Just to say that I found the communciations one of the very hardest things. Yes It is really up to your mum how and when to tell people, and which people to tell. I found that telling a friend or family member was so hard as each time you are having to confront the issue again, and also you feel responsible for the other person. They react quite differently of course, esp depending on whether they have any experience of BC.

I found it helpful to let individuals know in the order I wanted. And for some groups, I asked one person if they could inform other named people so that I didn't have to constantly let large num,bers of folk know what was happening. I also set up a couple of e-mail distribution lists! One for family and one for close friends and colleagues, a couple of whoi would then let a wider group know how I was. This was very helpful as I rwallydidn't want dozens of people ringing me up and emoting!

CC I finished my rads 6 weeks ago I'm happy to say. Had them alongside chemo. Had a low couple of weeks while blood counts low but am picking up better now. So I just have to deal with my 8th chemo cycle in September then I'm done apart from Tamoxifen of course.

All - my DS arrived back safely from South Africa - the whole group of teachers and students have clearly had a totally fabulous and fascinating trip. Lots of emotion at their welcome back at the airport and huge hugs all round! I am so glad he's had this opportunity. Experience of a lifetime I'd say. To see wealthy S A, but also Soweto work in a township school for a week near East London, and also sightseeing - wild animals, Cape Town etc - just amazing. Will take a while for him to settle back here I fear!

SR - so glad ds is back safely and had a wonderful experience ! sounds amazing...
this is a small teeny gripe and i feel bad for saying it, but can safely here i think (and it seems petty in the light of pranma's anxieties and purplefish's mum's recent dx) but when we were away (seeing family) not a single person asked how i was getting on -(except one sil when i showed her my newspaper cutting about strawberry tea-who asked if everything was alright now) Obviously I'm well and things are going ok but it's as if nothing happened to me last year. One BIL and SIL hadn't even spoken to me about dx at the time - and said nothing at all. i realise people may find it hard, but i do think some people either think it's all ok and nothing remarkable. I don't expect people to wail and gnash teeth but just some word would be nice. Sorry - I feel bad for saying all that as i've obviously not been through as much of a mill as many on this thread.

Purplefish - I agree with others, telling people is one of the hardest things - it used to make me very emotional because I was worried how people would react. But most of my friends, family etc. were really great and supportive without being 'fussy' about it. I think the idea of telling a few close people, and then letting them tell others is a good one. And also I didn't tell anyone except my DH and DCs until after surgery, I found that easier. But your mum will find her own way that suits her.

Great that DS is back safe and sound SR, I bet he's on a high and then will flake out with exhaustion. I glad he had such a wonderful time.

MAS - do you think people just don't like mentioning it? Some people seem to find it extremely difficult to talk about cancer, I don't know if they are embarrassed or feel they might offend - but one or two of My DH's work colleagues have who I know reasonably well have never mentioned it. Others have been absolutely fine. I can completely understand why it is upsetting - it is such a big thing when it happens to you, it's somehow important to have some sort of acknowledgement.

I also think a lot of people think having cancer is all about the chemo etc., whereas in fact the worse thing for me was 'having cancer' and all the attached emotions. I think people who may not have had the full range of treatments, have a different road but just as hard a journey. In many ways, going through extensive treatment somehow made me feel more secure than I do now my treatment is finished.

Sorry that was a bit of a ramble, but I'm trying to say, don't feel bad, and your feelings are completely valid - I'm sorry no one asked how you were doing - but you know we are all here for you

I am having a quiet weekend, sore throat went to my chest, so I'm on AB's. (Doctor kept asking 'are you sure you're not a smoker?' when she listened to me wheezing away) Anyway she said go home, and rest for several days. So I've got some library books and my knitting and am following her instructions (I do feel a bit lazy though!)

purplefish- take advise from these wise ladies, i am not the best placed person to talk about 'telling people' i actively hide my illness and its extent ! its a very personal thing and its one of the steps in accepting that you are ill iyswim, so maybe its a good sign that your mum is thinking about it.

i am here, sat on the lappy, with my hand in a semi-rigid cast i broke my finger and a bone in my hand when i took my tumble, i struggled with it all week but went to see SIL {ex-nurse) on Friday, she gently flicked the tip of my finger and i nearly punched her- so we decided that i ought to take it for an x-ray. Seeing orthopod at fracture clinic on Thursday to see what they want to do- tis a little insignificant bone but it bloody hurts!

We've had a hectic week, step daughter (15!!) been down, so the house which was already being turned upside down for the move is now in utter disarray!

On the move, still no date, we are waiting to see what the water board have got to say about the water main being too close to the house apparently (not entirely sure how one could possibly solve that- move the house, or the big water pipe ) but once we've got confirmation that they are aware of it we will be moving forwards with it. We are all rather stupidly excited about the whole thing now!

Chemo tomorrow, so i shall pop in when i can!

thank you KK - I appreciate that..you are probably right too. Hope the antibiotics help,poor you.
As for RWU - broken finger ! eeee. Am keeping my unbroken fingers very crossed for your house move

MAS - sorry about your people not acknowledging waht you have been through. I have to confess I was not always sure whether to mention illness to people when I wasn't sure if I was meant to know. Its silly - you can tie yourself in knots. Generally I think I'm someone who does acknowledge when people are having a tough time for reason or another. I think there is a problem with people sometimes if they're not sure how much they're meant to know iyswim.

Sorry - that's an unhelpful ramble

I (of course) don't know how I'm going to feel after treatment. At the moment I mainly I haven't got cancer now - I've got rid of it - even though only time will tell. Don't know if I'll feel otherwise a bit later. Am a bit worried about that but one step at a time.

KK - sorry about your infection - hope the ABs kick it away very quickly.

RWU - good luck with chemo this weeks. I sympathise with your finger as I broke 2 or 3 of mine when a child - my mum accidentally closed the car door when my hand was in the hinge !! My dad (a GP) put them round a packet of frozen peas till we could get to the hospital the next day!

Purplefish, my choice was to just tell DH and two very close friends at first, as I couldn't cope with anyone else knowing. I waited until I felt more accepting of what I was facing before telling most, as that way it was easier for me as I wasn't constantly in floods of tears. So I'd say tell your mum not to rush to tell all if she's not sure about it. There will be time and it does get a lot easier.

cupcaked, yes Rads for me too, though I don't know yet how much/ many. Will find out soon I expect. I've heard it ranging from 3 weeks to 6 and haven't a clue what/ why they make different choices for us, so am intrigued. Am sure it's not random, but it sometimes seems so.

MAS, that sounds weird to me and annoying too. Seems strange that nobody apart from your SIL asked. Do you think they have some sort of collective notion you don't want to be reminded or something? Am not excusing them at all. People can be pretty inept imo, especially British people. If it makes you feel any better, I saw one of my oldest friends recently and he failed to ask how I was - jaw dropping when you think I'm mid chemo. Yet his Argentinian girlfriend arrived an hour later and instantly asked, as to her it was a natural first question. We then had a cruel ten minutes poking fun at his British reserve. In his case it genuinely wasn't that he didn't want to ask, it's just that he didn't know if he should or not.

RWU, yeay to house move, sounds exciting. Boo to broken finger and also to more chemo. When are you through, as have lost track? Hope those SE are easier this time. Take care.

SR, I want to go on your son's trip. Am so jealous of all the things they get up to these days (am sounding like an old fart, I know.) My nephew's just back from Morocco and has a similarly fab time. Ouch on your broken finger story though. Your mum must have felt awful.

Kurri, hope you're back to your old self soon. Though curling up reading books sounds quite attractive as an alternative! What you wrote about cancer makes a lot of sense to me. No matter what version of it you've had, it's always huge. Maybe that's why this thread works so well, because we all completely understand that.

Wishing everyone a good new week.

Hello everyone - hope you have all had a good weekend. Sounds like you are in for a quiet few days KK until you get rid of the infection. So pleased to hear that your mammo results were clear - I am still waiting for mine .

Purplefish - I have read all of the comments from the others and they are spot on. I can't really add anything. I was terrified at the thought of chemo as i am a real wimp and I did have a rough time on it but I managed. It really is doable - one step at a time. I hope you have some support yourself - I felt for my family when I was getting treatment because folk always asked after me but sometimes I thought that my family were going through a worse trial.

RWU - good to hear from you again but ouch re the fingers. I did grin at the thought of you punching SIL - presumably with your good
hand!
Smee - re the mouth - try Iron Bru. I guzzled gallons of it when I was on chemo. Also V. good for a hangover which is probably why sales of Bru are higher than those of Coke in Scotland.

I was so envious to hear of Both SR's trip and even more so SR's Ds's trip (sure I have got my punctuation mucked up there). Bit of gardening chat - picked the first of my French Beans today - yum. What are you putting in your raised bed? I have just sown some kohl rabi - never tasted it before so a bit of an experiment.

MAS - sorry that your family didn't ask after you. You are much further ahead than me but already I can see that although the whole thing is still at the forefront of my mind, because my treatment is done other folk think that I have moved on - and I haven't yet. One of my sisters (wicked witch of the west)has only phoned once since my DX to see how I was doing (and that was the day of DX)

Lalaa - re the 5 year mark. So good to hear that and an inspiration for those of us further behind. Are you going to have a party? I think I said earlier on the thread that I am having a big do two weeks today. About 50 coming so just hope the weather is good as we will have to be in the garden. have all of the important stuff sorted out e.g. new diamante collars for my 3 cats (farty kitten, nice but dim and the militant tendency).

aaaagh - looks like an essay - sorry about length of post - must shut up .

Am aghast at your own sister haggis !! I can see that perhaps people don't know what to say or whether to mention anything and perhaps they feel I don't want to talk about it - sometimes if people I know who aren't particular friends ask me how I am I never know whether they 'know' or are just asking as you do out of habit/politeness I am shocked that my friend whose sister died the other week hasn't heard a word from our mutual friends,particularly as my friend was very supportive when they have had bereavements.
I don't want a fuss made of me but would like to just feel that they might have registered the big thing that happened last year. Anyway, enough of that-- thanks for all your kind and comforting wise words
Garden boasting from here - we had a lovely tomato today and an apple !!
Lots of luck with chemo RWU and love to you all for a good week.

Kurri, can't believe I missed your mammogram news. Big hooray for you from me. That must have been a relief. Fingers crossed for you Haggis. Must hear soon, surely.

Am up early working to meet deadline. Tea and toast and yippee my taste buds are back. Daftly tired, but feel strangely euphoric!

MAS, you're doing it again - I feel a mist of tomato envy building..

Hi all,
Ok - garden boasting - yesterday we had more lovely French beans, PLUS the -smallest possible- fashionable baby carrots and beetroot with our lunch! And 3 tomatoes have actually ripened so I'm hoping more will follow their inspiring example

I don't know what to put in the raised bed yet - am thinking about what to put round it too ie probably a little path so there's hard ground. I have deliberately left large borders round it so that we can put stuff around. The only things I've actually got organised so far are a fan trained plum tree due to arrive late September to put against the fence behind, and a climbing rose for same fence!

Will prob stick to reliable veg like courgettes, beans, peas. Not sure carrots are worth the effort really! I have bought 3 packets of seed which are for planting in the autumn - broad beans, spring onions and peas. I am not really very keen on pak choi or kale although I know lots of people grow these. Might grow into them I suppose!

I also need to make the bed look pretty as one friend has said it looks a bit like a coffin at the mo! Rubbish - but it does need a few lobelias or trailing veg (if such exist) to trail attractively down the sides.

beetroot eh ?
Did i miss your mammo result too KK ? (mind going sadly) hooray though and fingers crossed for haggis's.
Today is my 15th wedding anniv. - crystal apparently according to mil -and 20 years to the day i met dh- who'd've thought it !

Happy Anniversary MAS! Hope you have a nice celebration.

thank you SR - we will !

btw - my mum has raised borders all round her garden as arthritis makes it hard to bend - they look fab - will try to find a picture...all kinds of stuff in there....

not a brilliant picture as it shows more of the studio than garden, but you get the idea
www.facebook.com/photo.php?pid=31310790&l=17a4d71ffe&id=1089764602

Hi all

My, you've been busy!

Lots of catching up to do, but briefly:

Purplefish - sorry about your Mum's diagnosis, but this is the worst bit. once treatment is underway, you just grit your teeth and climb that mountain. She will do fine, am glad this thread has helped you to get some perspective. Lalaa's post from five years down the line is something to cling onto....

MAS and KK - happy anniversaries, both of you. DH and I have been married for 21 years and never a cross word (though mainly due to his pathological need to avoid a row )

KK - LOVING that puppy, especially the window shot.

Smee, I can so relate to the orange pip and your deep dh generally - we have two apple pips in a pot at the moment and there will be hell to pay if they don't so something soon. DD was deeply impressed by the buddhists on Arran: she fancies reincarnation so is now a buddhist, she has eschewed all meat and has invested in a Tibetan singing bowl and some prayer flags. If there are spiders in the house she gets me to kill them (sorry, I am terrified myself so can't pick up) as she thinks this will mean she can avoid bad karma (or whatever it is buddhists have) On the plus side, somewhere along the line she has sorted out her eating problems, and all her other appalling stress related problems, at least for now. I am putting much of that down to KK's book so thank-you again, and Hoorah!

RWU - woops! good to see you back but sorry about the incident and the injuries. Typical of you to go racing in oversized ballet flats. There is a place for health and safety after all, I was wrong!

Haggis - i too have the bone aches, have had them ever since I started on tamoxifen, and they are no better 10 months on, sorry to disappoint but i think it is a common side effect. I think some of it may be down to water retention and I am going to ask if I can take something for that to see if it helps. It is annoying but not dangerous. Still, insist on getting checked out, it is your right and will be worth it if it takes away any worry.

Cupcaked - hoorah for last chemo tomorrow.

Pranma - welcome back, sorry you are having a scare. I am pleased that the GP is both hopeful and vigilant: take care of yourself while you wait.

Pennies, welcome back, an glad you are feeling better and have been having a holiday. Opening up a new and better chapter!

In personal news - FIL died yesterday. He was very old and you may remember he had his fourth stroke about a month ago. I am mighty relieved, it has been inevitable and the waiting is horrible. Poor DH and his family though. On the plus side, it really looks as though he waited for DH to get back from his holiday before slipping away, so at least DH got to see him one last time.

Cakes- sorry to hear about your FIL. But happy that your DD sounds in a good place.

MAS - nice photo of the beds and the studio! I won't do any more as we plan to move when we retire and I'll reserve funds for that home - wherever and whenever it is. But the one bed is great for now and inspires me to rethink the end of the garden all around it.

I'm feeling quite good today as not taking CMF tablets this week . Yesterday DH and I pruned a bit mock orange tree and shredded it all up etc. So good job doine and more light coming in at top end of the garden. Highlights the complete overgrown mess of my 'rockery' though . That will have to wait till I get Lenny the line out and can do some heavy lifting/tugging/forking of overgrown shrubs.

O groan about possible Tamoxifen bone aches - could do without those! Sorry those of you who have to put up with that.

Hope KK picking up? And that RWU will surface in a few days post-chemo.