******The 36th TAMOXIFEN thread******

[NedSchneebly]

You all out there? Pop this way!

[Gigondas]

Also if have more sleeping tabs take one- the habit issue is secondary I think for now .

[notJenkins]

Sorry to hear you had another bad night malt it is really rubbish this cancer malarkey.
It may sound really odd but when I was having the sleep problems and anxiety I heard about a friend of a friend who fell over at the beach and died a couple of days before Xmas. She was only in her early 50s and it made me realise that anything could happen at any time and with cancer it is likely to be dealt with and life will carry on. I have a friend with cancer and she also admitted to thinking that too when she hears stories of fatal car crashes / murders etc. I don't know why it helped me and it may not help you. I also used to look at elderly people and feel jealous that they had made it to old age !
The mind does strange things under stress and when your op is over it will get better.
Gigs has given you some really good advice.

I still have a bad back and am now worried about work. If I have to take more time off I will be down to half pay which will be a disaster. I will need at least 2 weeks off for my scan in September as my metabloism will be mucked around with again. Hopefully I can just get in with it next week and it will go away.

We have nerf wars in this house and my dh went and bought himself a gun to play with.

[malteserzz]

Thanks both it does help to let it out when everyone's asleep, you do make me feel a bit more normal too I've also been feeling jealous of old people ! And got quite emotional at the end of the cup final as people were so happy and I thought why can't I be like that ? The death thing is eating me up sometimes it's the thought of leaving my kids and husband. I feel guilty that they're going through this too. I feel like its somehow my fault, we've had a lovely life up to now and I feel like I'm paying for it sometimes. I don't feel like that about you lot or anyone else with cancer so I know that's irrational.
The days I can cope with as everything keeps me busy, I still don't know whether to just take the tablets every night I'll see. We did sleep till 9 so that was good I've had a few hours
Glad big gig is ok
Nj hope your back gets better seems unfair you'd have to go to half pay

Not much planned here today , dd will be in bed all morning. Ds will be watching tv and out with his friends and dh gardening. I'll be pottering !
Have a good day and thanks

[Gigondas]

Am nodding with both Nj and your post as have felt the envy of old people. I get irrationally unsympathetic about some posts on here about 86 year old with cancer (which is horrid as of course it's sad) thinking they have had a life and raised their kids.

I also feel much worse for what my kids and dh than for me -I am glad it's me not them but sorry for all the pain and hassle it causes.

The suddenness of death (and fact or will happen to everyone) is true. Think we all know of someone touched by a sudden loss.

You will find you are happy again but it takes time .

Think need more before I argue with big gig about party outfit (it's a sport theme party so not meant to have party dresses).

[sandripples]

Yay for Ash!

Malt - I'm sorry about you not able to sleep. When I was first diagnosed I certainly experienced the thoughts, and feelings others have mentioned and didn't think I'd see my DS to university etc. (He was 15-16 at the time).

I still think keeping very busy, using distraction and exercise all help, but if the sleep doesn't improve you do need to contact your BC nurse or GP and talk it over.

I think as the first few weeks progressed I learned;
a) - not to assume the worst. The stats are very strongly weighted in our/your favour - more and more so all the time;
b) - not to try to work out all the different horrible scenarios - that's what could have sent me insane. So I just tried always to deal with what was known, not all the other possibilities. This is hard, as you get to know things about your individual condition a bit at a time, but it really helps if you can learn to think that way
c) I tended to wake very early - I just got up and started the day as I didn't want to lie there worrying
d) - think who your 'team ' is. I chose 2 friends who'd been through BC and asked them if they'd be my support. They were invaulable, as well as this thread
e) Stay away from any friends or family with a tendency to catastrophise. You're training yourself not to do this and you don't need the comments of people in the catastrophe frame of mind. Some of them are very well meaning but just not helpful at all! Identify practical people for your team and communicate with them - if people offer help have something they could do eg go for a walk with you, look after the Dcs for an hour, pick ups from school, lifts to hospital. A few wonderful people won't even ask - they might just turn up at the door with a home made meal for the family! personally I was amazed at how people rallied - not necessarily in the immediate few weeks but this thing takes months and some people were such stars of support without making a big deal of it.
f) I could control who I wanted to talk to, even inform at all, about the whole thing. For a couple of circles of people (eg work) I chose a person I trusted and asked them to pass on news from me - so that I didn't have to tell people everything all the time.

But in the early days its so hard, and your BC nurse will be able to offer support I think. I recall that I couldn't relax to read anything for weeks - normally reading is a great thing for me- I read for at least half an hour a day. Eventually (after about 6 weeks) I managed to focus on some short stories and then gradually started to enjoy reading again. I'm not suggesting you try to read, but this was an indicator for me of making a bit of progress in being able to relax IYSWIM

I suspect the clearing out cupboards syndrome reflects this inability to relax/trying to get things under control - I have another friend who's had a lot of health problems and she clears up before each operation!
(I'm usually rather a slut as far as house-work is concerned so at least having tidy cupboards was a good side effect!)
x

[amberlight]

Ooo, DS is 20 but I was still hoping to live to see him enjoy adult life

[malteserzz]

Thank you lots of sense there and I'm nodding along reading
I know I do tend to assume the worse and apart from this thread I'm really trying not to look at other cancer sites as its just too scary. I know the odds are in our favour and I know people who have got over this but till I get the full results I'm still thinking the very worst about my situation
The waiting is awful I should try and think 1 day at a time I know.
I did think there would be a bit more support, dh says its probably something you have to look for if you want it, I rang breast cancer care last week and she was very nice if a bit wishy washy.
Going to wash my hair and go out for a walk I think
You are all lovely

[topsyturner]

Morning All

DH and the DC are off to granny's .
I have decided to stay home today .
I have a slight case of the trots !
Tmi ???

Ash hope you are doing better today .
Malt we've all said that the very worst part of cancer , is all the bloody waiting around for results that we have to do !
Trice I hope you are feeling a little more positive today . If not , feel free to wallow on here . You have every right !
Gigs , how is Mr Gigs today ?
Think I should post you one of my new nerf guns .....

Going to make a big mug of hot chocolate and watch crap on tv for a couple of hours .
Quite damp here today , so no encouragement needed to stay in my pjs

[MaryAnnSingleton]

definitely do as gig advises and sr's thoughts too - this awful time will pass and things will feel better soon,might not seem as though it will,but it does. I think for now sleeping is v important for you to get sorted, so I think whatever it takes is the best thing. And keep on with the Mindfulness/meditation as this will help you,but you do need to give it a little time and practice. There's a 5 seconds Mindfulness exercise you can do whenever you feel overwhelmed - just stop and follow your breathing gently in and out for a few complete breaths -it helps you break the pattern and brings you back to the present moment.
Ash - hooray for you xxx
Am off to feed the baby rook....

[Copthallresident]

Also nodding along

I have been thinking that whilst I remember going for a walk and enjoying some sunshine and natural beauty made me realise quite early on that I could be happy again, and your rainbow post last night made me smile, I was still struggling to cope with the unbidden horrible thoughts at 4am well into my chemo, indeed still do on occasion. Why is it that something that you can cope with in the light of day takes on an unbearable weight at 4am? We have all experienced what you are experiencing. Sleeping pills may help you cope in the short term but you should see your GP and get whatever support you need to find coping strategies that work for you longer term, anti ds, mindfulness, visioning etc.

I also agree that it helps to develop an acceptance that shit happens, and that actually there is worse shit than Cancer. I am afraid you do become a bit hardened, I have struggled a bit with my parents grief, their circle of friends have all made it to their late seventies but they have recently lost three friends, and though I know the gap people leave doesn't get any smaller, I wasn't able to resist pointing out I had lost two of my closest friends, and faced a life threatening illness by 45.

I have also come to a point where I don't worry about what hasn't happened yet, obviously there are high points of anxiety like scans etc when it is harder to keep those thoughts in the box but dwelling on the worst doesn't get you anywhere but make you unhappy. I used to superstitiously think if I didn't think the worst it would tempt fate and it would happen but I can say authoritatively that you can refuse to think the worst and it can not happen Indeed whatever rubbish you have conjured up in your mind beforehand has absolutely no bearing on what actually happens . Perhaps Amber has some statistics on it, come to think of it there are statistics on how burying your head in the sand and being in denial has no impact on your outcome so it is scientifically proven!!

Having said that I do think it helps to get your thoughts about death out in the open and really think them through, we have a lot of fear about death in our society, the more so because it isn't talked about. My friends and I did feel it was a lot less scary once , as we put it, we had looked over the cliff at the reality rather than a fear of the unseen. The problem is you can't have those sorts of conversations with family or friends, it would be too painful for them, so you can only do it with a Councillor BCN or support group.

Woah that was a bit of an emotional marathon.

Complete exam hell here, Big Copt on phone panicing and Little Copt hyperventilating, only me going out and getting her M&S sausage pasta will help apparently ......

Gracie Re mock marks, following last year GCSE fiasco which shafted little Copts English Lit mark (part of reason for anxiety, A for coursework which accounted for 40% and predicted A she and 23 others predicted A given Bs, as gigs* will testify it couldn't have been the school's fault, it is good school ) I think the teachers are just not knowing what the examiners have in store for this year and are being very conservative. Good thing is colleges and unis know it is a fiasco, within 24 hours of the results coming out all those conditional grades were tumbling and academic school accepted little Copt to do Eng Lit A level even though said she had to have an A.

[MaryAnnSingleton]

I agree copt - shit happens and I don't think there's any point in thinking 'why me' when why should it be anyone else either. And in a weird way I don't really fear death - it may be that I have a very warped view of my life and in a way my battles (and you can say that about mental illness because you do have to fight) wiTh ocd at it's very worst made me long to not be here -I used to not want to wake up to face the sheer relentless hell of it. Also not sure how experiencing my brother's death might have affected how I see the whole thing. Apologies if it's all a bit bleak or heavy - am not a nutjob,honestly. I live a pretty joyful life and love it.

[malteserzz]

I think I'm struggling too because this is the 1st major trauma we've had to face we've both got our parents still who are fit and well. We met when we were young had no problems in our marriage etc the kids are fine it's just knocked us for six really.
Yes to just thinking about now rather than the future I find that hard
I am taking in all that you're saying even if I don't reply to it all I do appreciate it x

[AshokanFarewell]

Hope you can get more sleeping tablets or similar sorted out malt my GP gave me diazepam when I was first diagnosed as thought I'd be anxious but I've never used them as I am probably still quite in denial about it all. I've had much success with various meditation apps and hypnotherapy type things when I had sleep problems in the past. Headspace is quite good and free app, mindfulness meditation which can really help with anxiety. Also I have sleep phones which are earphones inside a fleecy headband so can sleep with them on, I listen to app and then fall asleep then just wriggle out of them in the night :)

MAS how did it go with the rook?

topsy hope you feel better soon :) not TMI at all. Or at least if it is I'm guilty of a lot worse!

cop hope the exam stress improves soon - when do exams start or have they already? I hope the sausage pasta helps.

I'm feeling much better, nearly pain-free and things sorting themselves out so I might be allowed home today otherwise not a problem as am happy to be here this time, this is where the drugs are!

[Copthallresident]

MAS Don't apologise, that is the problem, we think we shouldn't talk about it, it is macabre, bleak, heavy, yet it is everywhere and comes to us all one way or another. I do agree mental illness can be one of the worse shits than Cancer. I have certainly felt that my Cancer was a walk in the park compared to my friend's manic depression. She has very similar odds to the ones faced by me but in her case it will be that she has taken her own life because she feels it is so hopeless (and she has already tried twice) and yet whilst people still come up to me head tilted and ask How ARE you? and tell me how "strong" I was, they avoid her, and judge her as if it were her, and not the chemicals in her brain sparking off a set of absolutely typical symptoms.

[Copthallresident]

Ash Glad you are feeling better and have drugs Big Copts started last week, little Copt has six hours of Philosophy tomorrow, sausage pasta and some amazing multicolour mind maps seem to be helping.

I will be so glad to get to 6 June.

[sandripples]

Yes, mental health problems cause a huge lot of shit for people, I agree.

Each of us is individual and we rarely know what's coming round the corner, so all the more reason to try to enjoy and love life, as MAS says.

I think its funny that I had a sort of unconscious life plan in my head pre-BC. Cancer definitely wasn't part of it! I always thought I'd have a stroke like my mother. Trouble, is I am probably still going to have one of those too, at some point!

As I get older and look back, the tragedies become clearly part of the plan - part of my story- they had to and I've had to accept things that were appalling shocks at the time. There's no choice is there.


A friend of mine has had health problems of various sorts for a lot of years, but in the last 3 years, she's complained of hearing loss and dizziness. GP and others said part of ageing etc. and she got a hearing aid. Well she's at last had an MRI and a tumour (most probably benign) has been found in her brain- accounting for hearing loss and dizziness. That wasn't in her plan either.

Sorry that was bit rambling.
x

[MaryAnnSingleton]

poor friend SR
Have been thinking about the mental health stuff and just what a huge impact it makes on life- I suppose I fear it more than cancer.
Baby rook fed twice now - he is a big bird and huge beak -goibbled up several spoons of cat food- very sweet and very noisy !

[coorong]

Afternoon all -i think we all share those 4am anxieties. I was a bit of a black dog person before BC, but this experience has kind of shunted the worst of that away. I think because my previous depression was slightly self indulgent and now I really do have some thing to worry about, I'm less worried if that makes sense.

But what's extraordinary is, I had a small pathetic, lump, all removed with the mx, but there are still some people who cast a death sentence over me. I think the problem malt is that after we have come to terms with everything and we're happy, we have to waste energy reasssuring other people.

I was also reassured by two things. First, my BC nurse. She sees thousands of women a year, thousands, and has been in the job for decades. When she sees me, its as part of enormous crowd of women who are on the other side of treatment, an ENORMOUS crowd. She has perspective. Second, the huge market for post mastectomy bras. There are women buying these bras because theirs have worn out ..... -

Can someone send me a link to mindfulness training - or the breathing thing and the apps. I'd love to have a go

[Copthallresident]

coorong Yes I have worn loads out! and am on 4th prosthesis (though probably not designed for throwing across room at piss ups meet ups)

M&S wouldn't have exploited that market if it wasn't huge, and growing.

[coorong]

copt yes, that would clear the pub....

[malteserzz]

I guess cancer is something that hopefully you learn to live with and I have to do that somehow
You all have very wise words
I'm trying to remember that after my biopsy results on Tuesday we actually felt quite positive like you say there were lots of women there in the same position and it was very much that we are going to do this and then maybe this but there was a plan

[coorong]

malt i don't know if you're like me. But when I was pregnant, for a time, I thought I was the ONLY PREGNANT PERSON IN THE WORLD. Honestly, it was all about me. Then I went to an aquanatal class, surrounded by 25 other pregnant women, all due within a couple of months of me. It kind of de-specialised me, put it all into perspective. At first I found the BC department a bit scary, but then realised it was full of women all going through the same thing. The group for whom I have the biggest sympathy are men with breast cancer. I think that must be extremely difficult to deal with.

[Gigondas]

Glad you are feeling bit more comfy ash.

Agreeing with mas and Copt about facing your fears and attitudes to death/ cancer. Being told I had cancer was scary and upsetting but it was as nothing to looking at a scan of your son and being told that he was so damaged that nothing you could do would save him .

That certainly was my "why me" moment - it was also the time when I learned what it was meant by the phrase go mad with grief.

I like the pzizz apps for sleep . I think mindfulness one that times and lets you do guided or unguided meditation is the mindfulness app.

The best book I have found is here- it's good on science as well as practicality book and site

Jon kabAt zinn is the man behind the medical/science of all this so what he writes is well worth looking at it.

Lots of vest tops and new fleecy hoody bought while big gig out so a success.

[AshokanFarewell]

coorong do you have an iPhone? If so then here is a link to [[
itunes.apple.com/gb/app/headspace-on-the-go/id493145008?mt=8 headspace app in iTunes Store]] I hope that works as I'm on my phone. Otherwise if you search Headspace it's the first app to come up.

I've been moved from my individual room to a bay. I wouldn't mind but two of the ladies spent yesterday evening discussing all the people they knew who had died and how they died I'm hoping I will be able to go home this evening as I am making good progress. Lady next to me is also new and her husband has brought their one month old baby in for a feed, super cute :)

[jchocchip]

Malt at some point I just had to trust the docs when they said that it was treatable. I was lucky, after my biopsy results, I had pre op the same week and lumpectomy the next week so I only had to live with the knowledge of my cancer for a short time. Post op results then reassured me and quantified my fears. It helps me to class myself as having had cancer rather than having it. I know it may come back sometime but I'll meet that at the time. Also my Aunty helpfully had a stroke while I was having rads which put things into perspective for me, a couple of small scars were not going to impact my life long term, and losing the use of an arm, would.
I've done the mental illness thing and some friends did find that hard to cope with, that is why I can't take antids really, they have a tendency to push me towards mania. Diet and exercise are good for regulating sleep patterns, a good walk outside in the sunshine even if only for 15mins at lunchtime really helps. Running and swimming also lift my mood and help me sleep.
Stuck in the car for another hour or so going to visit mum and then home much later...
Anyone doing anythjng more excitinf? How's the rook, mas?