********The 37th Tamoxifen Thread, Fun and Tears in "Cancerland" *****

[Copthallresident]

Trolley Rolled over and "Its a small small world" playing on the ipod on repeat.

[Copthallresident]

Aaargh Trust me to have a typo in title and not to notice I was 1000th post and not provide a link. Sorry hope everyone finds this..... and later

[MaryAnnSingleton]

well done copt I'll link...

[MaryAnnSingleton]

oh,wait-can't can we

[sparklesunshine]

Just marking my space (& laughing at a baby conceive in Disneyland)

[BetsyBoop]

Found you all again :)

Well I took the kids out for a long walk and a play on the beach this morning and I'm feeling much calmer, have stopped shaking and managed to eat an almost normal lunch. I've been trying to do a bit of sensible online research (like the NICE treatment guidelines) and try and get my head round all the lingo and TLAs - it's like another language My usual steely inner core is back and I'm resolved to just take whatever is heading my way and get on with it as best I can. :) I expect I'll have quite a few more wobbles yet though!

(I had a detached retina in Dec 2008 and a series of ops in the two and a half years following to try and save some sight in that eye and deal with the resulting glaucoma, so I kind of figured I'd done my share of crap health in my 40s, obviously not )

DH was in bits this morning, but I packed him off to work anyway, he's better when he's kept busy! His boss has been really good (her DHs prostate cancer chemo finished just before Christmas, so she's been there I guess) and told him whatever time he needs off is sorted. I mostly worry about the effect on the kids they are only 5 & 7. Trying not to let dark thoughts about not seeing them grow up creep in :( We are now curled up on the sofa watching Harry Potter :)

[EarthMotherImNot]

Wow, this is the fastest I've found the new thread when the old one's full.

I'm busy reading your answers and boy you lot are honest (gulp) Thats what I need though. I'm afraid my lovely family do the "we'll all be here for you speech" and to an extent they will. They won't have actually done it though.

I think if I read the worst and think, "I can manage if thats the worst" then if it's not that bad I'm laughing, right???

[topsyturner]

Found you !
Went and had a nap , and you all disappeared

Copt that's going to live with me for ever .
How , in the Name Of All Things Holy , did you manage to get Jiggy in the Magic Kingdom ?

I'm so very tired today .

[malteserzz]

I've found you too sorry about that lol
Betsy you sound very normal for this stage, shocked, scared, not quite sure what's going on its crap. However 4 weeks on I am managing to get through each day without crying. I couldn't sleep at all and was scared out of my wits in the early hours not knowing what to do with myself. Even considered ringing the Samaritans as I didn't want to wake dh and was panicking. So I'm now on sleeping tablets from the gp. Sleep at night also makes it easier to cope in the day. Not saying you need to do that but it's an option

I've read all of your chemo experiences and still can't believe I'll have to go through all of that. Actually still can't believe I have cancer. I'm angry too about the loss of my old life.Its not fair. And the effect it's going to have on the kids, dh, my parents, his parents etc.

Anyway have had a good day bowling and out for lunch hope gigs is having a lovely Disney day !

[KurriKurri]

Ooh - have we ever actually filled a thread before Well done copt - I didn't even notice we were getting to filling point!(love the title - typos and all )

betsey - wishing you loads of luck for your results on Friday, - you and your DH are bound to be feeling a bit fragile atm, - the waiting is horrible.
With regard to explaining things to the children, - I am not much help as mine were older teenagers - but there are plenty of women on here who's DC were similar ages to yours when they were DX, - and I'm sure they will have plenty of tips about how to explain things to them.
Some people find to much information all at once a bit overwhelming, but I also think it can be very empowering, to know what is what, from reputable websites, NICE, MacMillan etc. (for some Google sites you need your bullshit filter firmly in place though! )

About anger - I do feel some of that, - I had a pretty hefty dose of bad health in my thirties which I felt stole my time with my young DC - and somehow in your head you feel 'right I've had my share' - then along comes the next curve ball!
I used to look at people who have absolutely no health problems and think 'what are you doing that I'm not?' - But of course it's totally random, there is no reason to any of it, so it is fruitless to waste time trying to figure it out. 'Shit happens' is pretty much my philosophy these days. And I have lots of good things in my life to focus on, so am blessed in other ways.

Waving to Sparkle - hope all is well with you, how are your girls settling in to their new home?

[KurriKurri]

x-posted with many - sorry, Waving to all.

[KurriKurri]

Emin - just one thought - my chemo experience wasn't good, but if I needed it again, I wouldn't hesitate, and if it's playing havoc with your normal cells, at least you know it will be doing the same to the cancer cells.

malt - I was terrified at the thought of chemo before I had it, but I think a lot of that was to do with the connotations of the word - we've come to associate it with something awful. (Some how in my head I felt chemo = 'serious cancerness' - now I think of it as another weapon in the armory) It is simply a chemical treatment like many others for other diseases which carries side effects, but also many benefits.

[malteserzz]

Kurri thank you. I'll face whatever I have to and at least will be able to ask you all about side effects etc. I'm terrified of it but scared more of dying so got to be done I suppose x

[KurriKurri]

Malt, you will be fine, Aunty Kurri will hold your hand (and wipe your face with a hanky she's spat on and give you a beardy kiss and a parma violet sweet )

[amberlight]

Frozen mitts etc - question from S on previous thread - Docetaxel is bad for attacking the fine nerves and cells in fingers and toes.
Studies showed that cooling the hands and feet stops nail loss/blackening of nails/the worst of sensory loss from damaged nerves - in about 50% of the cases. So I thought it was worth a whirl. The unit had frozen mitt/gloves they gave out to wear during the infusion. But they didn't do them for feet. So I took along bags of frozen veg in a coolbag, wrapped them in a cloth or couple of carrier bags, and perched them on my toes during the infusions. Have to be careful not to get anything so cold that you get frostbite, but it seemed to work. I did end up with sensory loss in fingers and feet, but most of that happened on Herceptin that hated me, not on the docetaxel. They told me Herceptin was mild, so I didn't use the frozen stuff those times.
Hope that helps.
For what it's worth, I used to have a right old laugh on the chemo ward during it all, with a big pile of magazines and sarnies etc. My onc used to come in and shake the chemo tubes suspiciously, stating that she was fairly sure they'd accidentally only filled mine with water.
But I have a different set of genetics to most people, so drugs affect me in very different ways.

[Copthallresident]

topsy we were in 18th cycle of trying for a 2nd baby, after literally hundreds taken to make big Copt. Two days before we had had to get jiggy and then get to hospital within an hour so they could do a test to see how quickly DHs sperms were swimming up my fanny (looked down microscope and there was one vaguely meandering around and rest were asleep on sofa snoring like DH ) We had also tried being jiggy with vinegar, bicarbonate and with my bum on four pillows so it would be more of a downhill slope.

When that stick said I was ovulating poor Dh had to do it wherever, whenever, however.......

malt hope my post reflected that though not pleasant normal life does go on, it is something you endure for a few months, we likened it to pregnancy and then get on with your life.

betsy my girls were more or less exactly that age. We told them I was Ill and was going to have a treatment which would make me iller. It was slightly complicated by the fact one of my closest friends had died of Cancer found too late, after a short and brutal illness three years before, and they had been very much part of looking after her DCs, so we had to make clear it was different. Her lovely husband played that one brilliantly. We told my 8 year old a little more, she was already the little scientist and receptive to talk of mopping up bad cells. Little Copt was only really concerned life would go on as normal, she remembers how much she enjoyed playing with my wig and prosthesis. Main thing was keeping it normal and being open to the extent they could absorb it without leaving them feeling they were responsible for either me being ill or for me getting better. And lots of Harry Potter.....

[BetsyBoop]

ok - general qus about chemo

is it likely to be feasible for me to drive home after chemo? Or is everyone different and it will depend? How long does a chemo session take roughly?

Hospital is a 30min drive away, DH doesn't drive, don't fancy a walk & two buses, taxis cost a fortune, aargh, I had all this with my eye surgery stuff (they dilate your pupils and you can't drive for at least 8hrs after) can't believe I'm doing it again - have nagged and nagged DH to learn to drive as well...

(I'm an ex-project manager - DH jokingly said this morning I'd have a "project plan" in place to deal with this by the time he came home tonight! Not quite, but he's right I'm a bit of a lists/plans person!)

[Copthallresident]

betsy first one they kept me in, because I am atopic and they were worried about an allergic reaction. I think just being in hospital made me feel weird and a bit anxious so probably wouldn't have driven. After that a couple of friends came and watched a movie with me during chemo and drove me home, so I didn't drive but I think I could have, and I certainly drove to go out the evening after chemo, would feel a bit fuzzy but wouldn't hit until the next day.

However in project manager terms you still have to assume this planning scenario has a significant but not certain chance of occurring.......

[BetsyBoop]

thanks Copt that's really helpful. Haven't said anything to kids yet, waiting until after Friday. Our situation is complicated too in that my brother died of bowel cancer in Dec 2011 eighteen months after diagnosis (aged only 56 :( ), so their experience so far is a negative one too. His cancer had already spread to his liver by the time of diagnosis. Hopefully I'll be able to stress the positives and that my situation is different.

(That's the other thing that is getting to me ATM - it's bowel cancer that runs in our family, no history or breast/ovarian cancer at all until now, and I've just upped DDs odds too....)

[malteserzz]

Betsy I don't know I'm still learning myself but I'm sure someone will answer soon
Kurri and copt you both make me feel like I can do it thank you, I like the pregnancy analogy
Amber I didn't know about the frozen veg thing. I'm glad you managed to laugh through your chemo, good way of dealing with it

Sorry about your friend copt x must have been hard for you to go through it yourself after losing someone close to it too

[malteserzz]

I type too slow !

[KurriKurri]

Theoretically feasible betsy - I'd have been able to drive home afterwards because my effects took a few hours after treatment to start, others can start to be sick while they are having it - so it's the old everyone is different I'm afraid, you have more idea after you've had one (although you are a long way from chemo yet - so don't over- think it ). After radio therapy I felt very nauseous straight away and driving would have been hard (if I could drive which I can't ) but many people have no sick effect from RT.

If you are having chemo you can have hospital transport - worth enquiring about if it comes to that - there might be a small charge but i would think considerably cheaper than taxis.

How long it takes? - again it varies - the actual infusion, 2-3 hours IIRC, but you need to factor in waiting for a chair plus any other hold ups in the unit, plus them sending your medication up form the pharmacy - which they don't usually do until it is absolutely certain it is going ahead, as its expensive stuff, also you usually see a doctor before chemo so that's another add on. All in all I didn't plan on doing much else on chemo days

[KurriKurri]

Oh yes - copt is quite right I had forgotten that, the first one takes a bit longer as they are watching for allergic reaction.

I think the one thing I found I learned when I had chemo was to go with the flow, which is hard if you are by nature a person who likes order and control and planning (which I was).
If you try to plan too much you will get frustrated by it all, you sort of have to accept the bad days and rest and relax on them, and take advantage of the days you feel a bit better.

Mainly for me chemo made me feel exhausted, similar to the extreme fatigue you feel if you have ever been very anaemic, so you are a bit limited in what you can do at times, but there are still plenty of things you can do and enjoy (just not mountain climbing or extreme sports). (and again - not everyone has the fatigue to the same degree - I can only recount my experience)

[Copthallresident]

Thanks malt still miss her of course but she like betsys brother had a Bowel Cancer, and that had spread to too big a portion of her liver by the time she had symptoms to operate , even though they can do all sorts of clever things with lasers etc to keep people with secondaries on the liver going for years, even indefinitely . She was really really unlucky and with Breast Cancer these days our chances are incomparable, although I had lots of horrible memories of her experiences to deal with, it also made me feel lucky that I had such a good chance of surviving.

[amberlight]

I would also say always take rations and entertainments for hour after hour of hospital time. Appointments never run to time. Chemo wasn't always set up on time. Radiotherapy appeared to be on a "turn up in the morning and we'll see you by midnight" plan etc. So, assume everything will be delayed and that you will be in there forever, then you'll be pleasantly surprised by their relative efficiency.

[coorong]

afternoon all - betsy don't jump the gun on treatment until you know what's what. I ended up with a mastectomy but no chemo or radio - but am on tamoxifen. You won't really know what you're in for until the pathologists have a look at everything. For me, it was all confirmed after my operation. All the pre op biopsies were indicative - but not definitive (if that makes sense).

I had my diagnosis in January and op inMarch - my daughters are 5 and 7. I explained my breast was rotten and had to be removed and I got a new one - which they are keen to see. We;ve been very clear about not using the word cancer around them. Not because it scares me, but because lots of people, if they hear the word (e.g. their friends) would assume the "hollywood" worse - ie cancer = death. Which we all know isn't true.

I told both their teachers in case one of them announced that "mummy was getting a new breast" - didn't want them thinking I was having a "jordan"
Naughty copt in doing the dirty in disney wagon ..... you know they are paranoid about secuirty and CCTV EVERYWHERE!!