Tamoxifen 34 *the power of Sauron*

[MaryAnnSingleton]

new thread !!!

Hi everyone, I haven't quite caught up since I was last on here but I hope everyone is doing ok. I'm really happy to see Gig is back home and feeling a bit more comfortable.

NJ I've no idea what normal is anymore but I had exactly the same feelings as you and even a over year later I still get moments, just not as bad and not as often. I did get NHS counselling - it was just eight sessions but it was very helpful. What was especially useful for me was some breathing techniques which helped ward off some of the worst physical effects of the anxiety I was feeling. We also talked about how difficult it was getting results. I found that even when I got good news I couldn't feel as happy as I felt I should - it felt more like some kind of near miss so there was relief but also that adrenalin/anxiety thing with it. I'm not really explaining it well but maybe you get something similar.
Ash you are very brave looking at your letter and it's not surprising it left you a bit wobbly.

I've had a lovely day at Kew Gardens today in the sun, just wish I didn't have to go to work tomorrow!

Ash, try not to stress. So many of us have had the nodes news. I know it's freaky - hit me too, but my Onc was hugely reassuring. Basically told me to trust the treatment. Lovely neighbour of mine who's a Cancer nurse told me to try and see it as a positive (bit of a stretch, I know!), as said having it in nodes means the Oncs really go for it and you get the best possible treatment. You take care. xx

Night, hello again. V.nice to see you. You haven't said how you are. Hope okay? Don't work too hard tomorrow.

NotJ, Night mentioning breathing has made me remember something an acupuncturist told me when I was having mini-panic attacks/ problems with breathing. She told me to sing quietly as I walked and have to say it worked a treat. Helped the breathing, but also gave me something to focus on to stop obsessing over what-if. Might be worth a go.

Night all.

Morning All

Ash I had 12 out of 16 nodes with cancer in them , they just whipped em all out !
Obv it's a happier situation if the nodes aren't involved , but when they are it just means a bit more treatment

I never once read a path report or any surgeons letters .
I still can't remember my stage and grade of cancer ! (HND can tell you though , she took in all the details for me from the early days , and will tell me them now if I ask !)
I very much bury my head in the sand and just deal with what I need to at each stage !

Gigs when is Stage 2 Bionification taking place ?
And is the Trip to Tesco any further along in the planning ?

Does anyone have any apts this week ? So I can get my candle lit and channel my best positive thoughts for you !

My head is still a bit fuzzy from my weekend of debauchery , so forgive me for not catching up properly with you all .
But you are all VERY much in my thoughts x

I appear to have been left with a fridge full of cheese and houmous by my weekend visitors .

Right , I'm going to attempt another hours sleep before I have to get up to turf my Little Angels out to school .
I only got up to get my phone charger and a nice big mug of peppermint tea (damn persistent niggly cough !)

Later Lovelies x

Morning topsy mmmmm cheese for breakfast. I've woken up with Mum's noisy heating coming on. I did turn it off overnight though! Dawn chorus and sun coming up too.
Can you crochet, gig? If you can move your hands without causing pain in your shoulders, a ball of wool and a crochet hook are quite distracting... Glad you managed to get out yesterday, park is always good.
Took Mum out to church yesterday and she was made a big fuss off which was good . I told her the correct answer to the question 'how are you?' is 'mustn't grumble'. Because tbh, she would never get off the subject of aches and pains. I know, I'm cruel. But it did raise a smile or too as she subverted it in various ways 'I must not grumble, but I want too!' Was good to look at the spring flowers in the gardens on the way there and being outside triggers memories for her. Hopefully something to talk about to carers this week...

"mustn't grumble , but I want too"

Fab Mum jane !

All ? I did sleep much better except mini woke wth a cold which got big big up. But they are off out later so can potter t home (am Mega stiff as find walking far hard as am standing all awkwardly - smee did you find you got all out of line when you had your back problems?).

The response of your mum and that you got her out jchoc.

Topsy- does this mean you can get some quality candy crushing done when kids Back?

On letters/grading , I think it isn't helpful unless you have some medical or science background and find that kind of thing helpful (I know amber and hnd are good on this). Also my letters always go over whole history - some of which is quite old and changed but still on there which I find odd.

You know what works for you I think.

Thanks for hospital ideas- stage 2 op is Thursday and will be big one (about 5 hours) and then will be itcu for a bit. This is main one to remove muck and rebuild round the neck with Lego. I then recover for few days and they do stage 3 (mainly putting more Lego in back of neck to secure ) a week on Thursday . Then more recovery.

I can crochet but love to knit and have something to finish, the problem is where neck is dodgy it is giving me sciactic pain into my left arm and hand. The pain last week was cos put line in there which was doubly sensitive cos of chemo. I am worried/aware that my left arm function will be limited for while after op. am sure will recover in time( has for others) but it is always bit bruised post op anywhere.

So will look at Audio books ( crime history biography arts what I like) and try yo keep up with Ou.

Gig, yes I was all over the place with my back. Had far, far more pain and problems with that than with BC, as I got totally misaligned, so the whole of me went wrong in a way. When you're bionic, you'll feel so much better am sure. Do you get to choose the lego colour?

Jane, at your mum!

Any cheese left, Topsy??

Hope you're feeling a bit more okay today, Ash. Seriously you must talk on here if you feel stuck. That's why we're here you know.

Work and more work here. anyone?

Thanks, I'll have a . Packing up to go home soon. Need to clean out a few more cupboards because of ants :(
Grr about pain, gig, audiobooks sound good idea - hope you find some good ones.

Holds hand out for . Doing my admin here after row with useless Gp about repeat script.

And it is horribly painful smee- i do feel for people with long term back or arthritis type issues as must be so hold.. Generally my shoulder ok if keep on meds but this is pure aches and pains in wrong place. I have a friend who has arthritis and joints issues - she moved to Spain for a while as was told climate as at 27 had bones of a 64 year old.

((((gentle hugs)))) for you, Gigs. I remember crying with the pain in my back. Was constant, so exhausting and often extreme. I used to walk DS to school, then wonder how on earth I would manage to get home. Couldn't sleep for longer than a couple of hours as the pain would wake me and my back often went into such bad spasms that I literally couldn't move. The operation will work and soon you'll be restored! Meantime, am pouring you a rather inadequate x

to Gigs - pain is so wearying, I feel for you so much. But operation Lego will get you sorted and you'll feel so much better.
I have two or three Ian Rankins on audiobook and a Reginald Hill (Dalziel and Pascoe) which I will happily shove in a padded envelope for you if you fancy a listen - a quick check shows I also Have the Thorn Birds audioBook - if you fancy being swept away in a romantic whirl - I don't want any of them back, just hand them on to someone else afterwards.

jane at your mum - bless her, - I'm glad she was able to go out and see people and get a change of scenery. Does she go to a day centre or a memory group at all? - my Dad went a couple of times a week, and after intitial protesting he really enjoyed it. My mum actually goes twice a week now although she doesn't have dementia, but she has mobility problems and they do 'sitting down tai Chi' which she loves and she likes to chat to the other folk there.

Waving to smee and topsy.

Asho -sorry you have been feeling down my lovely, oncy letters will always make you feel horrid - its the way they write them and seeing it in black and white I think. But Smee is right with regard to very thorough treatment. I was told to think of the nodes as a sort of dustbin to catch all the crap.

I phoned for a GP appointment this morning - as I have been feeling gradually more and more crap (I suspect the bastard thyroid is acting up again) - needless to say there are no appointments until 29th April, and those appointments won't be 'released into the system' until Friday (i.e. they can't even give me one of those appointments now, I have to ring on Friday and try to bag one before anyone else does!), so I have asked for the GP to phone me instead - since I'll presumably need a blood test, I might as well get on and have it rather than wait for a GP appointment, then a nurse appointment and then results - by which time my thyroid will be out of control and I'll be even more of a a raving loon!

I am cheering myself up by dyeing some of my clothes (and my hands) purple.

Good morning everyone!

smee I know, I feel very silly having made myself all hermit like as I felt so much better as soon as I read through the thread! What a wally I'm feeling much better thank you.

gigs will be thinking of you especially on Thursday. Hope mini gig is feeling better soon! Enjoy the peace while they're out :) and that you feel less achey soon too!

jane grr about ants! Flour/talc anything else like that works quite well to keep them out if you're not into all the chemically things.

I hope everyone is having a lovely day so far :)

Waves to purple kurri (and love the book ideas- the thorn birds ESP can continue my 80s retro bit. Does anyone remember return to Eden)? I feel your pain about useless gps.

Ash as you are young you can Join in the 80s revival .

Smee- nodded about The walk to school in agreement . It so draining but at least know why. When got in cab from hospital , I had half an hour of case history of cabbies wife's ongoing undiagnosed back pain. I was a bit as to why I had to hear it (apparently being picked up from hospital means I am interested). Even when I tried to change the subject (thatcher funeral, protests etc) I couldn't break his stride.
Worrying news from the zoo trip- mini very taken with the skunks.. Let's hope no pet ideas for soft dada while i am in.

But I treated myself to big veggie tofu stir fry at Thai cafe so am happy.

And on nodes if you think how they come up when you have A cold, then you are going to get a proportionate response to cancer.

KK cross-posted. Grr about the GP! At least you should hopefully be able to get the blood test after a phone convo. And the GP may be able to book you in over the phone. Sometimes when I see the doctor they just book me in for another appointment as they seem to have their own system, even though the receptionists are adamant there are no appointments for months... we have similar problems here but I've found saying "I'm having chemotherapy AND... whatever the problem is" is has been quite effective in magically conjuring up an appointment. The purple dyeing sounds like fun! You should put some pics on your profile when they're finished :)

gigs what an annoying cab driver! Not really what you need at the mo. And eek about the skunks. Must be one of the worst pets ever! stir fry sounds yum.

Gigs - may as well give in now and prepare the skunk pen - and I will get those audiobooks off asap (you can listen to the story of Meggie and Father Ralph while Dh shovels up skunk poo)

Asho - yes I'm hoping he will just book me in for a test - my GP is actually very good, but it's getting past the receptionists to get to him (although to be fair the receptionists are all quite pleasant, just that they have this computer system which doesn't seem to want to et anyone make appointments )

Glad you are feeling better now - when are you due to have your next cycle of chemo - do you have to wait for Dr W to get back? ,most annoying that there was no reason why you should have had to wait.

topsy - hope you and HND are still more or les in one piece after the weekend

The top I dyed looks as if it is OK, the skirt (which was a kind of beigy colour) seems to have gone a nasty greyish colour . It might be because the instructions said you had to stir it continuously for 15 mins and I gave up with exhaustion after about 5, and then just poked it a bit for the next hour.

Oh well, - next dyeing project is my hair - I have red, darkish brown or blonde highlights - or a combination of all three

Arf at grey skirt.

I hope it stays with skunk - I am getting lion and tiger pics now .

Hello ! Good to see everyone?s fighting spirit at large.

I?m occasionally on here but have nc as I?m aware some friends are on here who don?t know about my latest health news and I?m not yet ready to share it. I was Dx with bc in 2009 and in Dec 12 told it had progressed to stage 4 (a definite single isolated met, but also a couple of inconclusive question marks over other areas: I?ll know more this week following another recent MRI scan).

Basically although I feel well, I?m steeling myself for news of further progression. But even if there is none, it?s only a matter of time. Things aren?t going to get better !

My youngest dc is 9 and at a local prep school. I hope I?ll tick along for a fair few years and get to see him shaving, starting to speak in grunts, etc. But if things go downhill sooner rather than later, (and my onc has no idea if I?ll live 1 or 2 years or 10, my metastasic site being ?unusual?) I wonder sometimes if it would be better if ds were at a boarding school from 11 or 13 rather than staying in the day system we?d always planned. My older dcs are teens - 2 about to go to uni and 1 approaching GCSE. THey have their trajectories mapped out.

Dh and I have tentatively broached the subject but neither of us feels strong enough yet to air it properly. I?d like to imagine ds at home in familiar surroundings with familiar friends but is that likely to be too painful for him ? Would a gentle boarding school be in any way a useful distraction or an extra cruelty ?

I think there's a skunk joke in that book gig or perhaps in a previous joke book....gah about cabbie

Lots and lots of good thoughts whizzing to you for Thursday dear gig and to kk for quick response from gp.
Hope the clothes and hand dyeing is a success - I used to get urges to dye things.

Am glad you're back ashokan - saying stuff on here usually puts things back into perspective.

Have been drawing a family group this morning (trendy folk so am keeping my colours muted except for the children's clothes) and am now venturing out to town.

There was a report from agent about her trip to Bologna book fair, but as usual no mention of interest in my work- sigh.
I so want a book project - I do love the pictures side of things but books are where my heart lies.

My Posh, that's a lot to ponder. So sorry to hear you have mets. How did you find out? Am guessing you must have been in pain of some sort, so hope you're feeling okay now. On boarding school or not, well I suppose only you can know your son. Is he the sort who would thrive away from home? Very hard for any of us to know. I can imagine it might be harder in lots of ways for him to be away from it all and from you, but a lot depends on him as a person. Did the others go to boarding school? Would he feel singled out/ excluded/ the odd one out if you sent him if the others weren't?

Kurri, hope GP calls back and says yes to bloods. Seems absurd you have to wait that long. We have similarly challenging receptionists, but have a walk in system too, so you can always see someone same day if you have a mind to. at dyeing exploits.

at taxi driver Gig. Sweet about the skunks - I like them too, they're cute. You know you want one as a pet really.

x posted with you, MAS. The London Book Fair's started today. Is your agent there? Maybe something will come from that. I have no idea how these things work, but spring usually brings new projects imo.

hello Poshaubrey - lovely to see you, but sorry you are having to cope with difficult news at the moment.

The question you pose is a very tricky one, - so hard to make these kind of decisions. I think it all probably comes down to what you think will be best for your DS knowing him as you do, and the sort of child he is.

My DD was 18 when I was DX, and just about to go to Uni. She wanted to delay going, but I was very firm that she didn't change her plans for me, so she went. In some ways I'm really glad she missed me having chemo and being pretty ill as I know she would have worried, but on the other she says she felt cut off and worried not being here, and perhaps being able to actually see me would have been easier for her. I don't know.

If your DS goes to boarding school, would he be back for weekends etc fairly frequently?
I suppose in a way with a young child it might be easier for him to continue to get on with his life doing little boy type stuff in a community away from home, if you are going to be going through treatment.

Aargh - I don't know - I'm being fairly useless here, and obviously you and your DH will have mulled all these arguments over in your head too.

What does your DS think - does he understand the reality of the situation (I know there are no definites obviously) what would he prefer?
Does he have a strong support network of other adults (grandparents aunties etc) and other kids in the home setting? - I think I might be reluctant to tear him away from that if so.

I think somewhere inside me there would be a little voice saying that horrible as it is to see someone you love going through treatment and being ill, somehow being cut off from them is worse and more worrying.

Hopefully someone less useless than me (and with DC in a similar age bracket to yours) will be along soon with other suggestions

Hello PoshAubrey- am sorry to hear about your mets diagnosis - I was diagnosed with lung mets in Sept 2012,so it's relatively new to me too (bc in 2009 too) I think the prognosis thing is not to be focussed on too much as no one can really tell- I was told 2 years by onc. but obviously people go on for many more years - I tend to think that as I feel well now,then I am well and concentrate on that. As far as boarding school is concerned, I wouldn't want to send my son away -I really don't think it's a good idea - (a lot of this is my own dread of being sent away to school -I didn't go,but my parents were sent to boarding schools,my mum at age 4)
I'm trying to think of advantages of being sent away but can't come up with anything . My brother and I were at home all the time when our middle brother was dying from cancer (nursed at home) and it made home life (for him at least I hope) feel pretty normal (as we squabbled and bickered as usual).

Also, agree with smee and kk that a lot depends on your ds and whether he'd enjoy being in a boarding school environment -and i suppose whether his siblings went and that's what your family do.
Tricky one.
Can you get the anal glands removed from skunks to make them house friendly ?

MAS - how friendly do you imagine a skunk would be if you tried to cut off its anal glands?