********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.

do they do a chemo chat first,like at my hosp ? Where they tell you all the dos and don'ts and what you can eat/avoid/warnings about temp etc etc ? that might be the first one anyway. Just ring and ask.

T wasn't really an escaper or climber as a baby - though mum says I used to run away from whoever was looking after me. My middle brother used to run away (once carrying a candlestick to visit me in hospital when I was 6 and he was 3 - he was found on Kew Bridge heading to Hammersmith) He used to escape through windows and was once found up some scaffolding completely naked.

EMIN first apt will be your pre chemo bloods .
2nd apt will be for chemo .
They do your bloods before every chemo to check your cell levels are healthy enough .
Will also weigh you so they can work your dosage out .

Mas and at nudist escapologist brother !

I like the idea of a night commune with cake.

Emin-that's lovely about the visit. I think appointments are for tests/chat as need to do those first so can plan and measure chemo.

Topsy- I had resigned myself to fact mini won't get better. She loves to yell mama /dada before doing something lunatic (we have tried most of the furniture, we can also imitate and laugh at mum saying no and wagging her finger). Mas-your brother sounds like Houdini.

Malt-hope letter comes quickly.

Back to my essay then radiotherapy fitting later then cake and I think after.

Thank you all, don't what I'd do without you. It's looking very real now, chemo that is! Better go and book my passenger transport for next week x

good luck with radio measure up gig - cake sounds essential..am chewing on prunes at the mo.

And as for question of how long -depends on how slow infusion is but will be a pre med that takes up to an hour then will be couple of hours to do actual chemo. Make sure you get stocked up on drugs (ESP anti sick).

I like prunes- Sainsburys used to do vanilla soaked ones .

Afternoon all
blueberry muffins for the trolley, I've told my friends they can just come and see me they don't have to bring muffins, flowers, wine etc though of course it's all welcome had a nice coffee and chat this morning, really tired now though as no sleep last night so might have a power nap before ds comes home
Started doing my harder arm exercises today finding it difficult to know when I'm doing enough or too much, any advice ?

Another for the nightime club, got to sleep at 5, up at 7 to make Little Copt breakfast, then have tried to sleep amidst DH showering, the bathroom project resuming, the phone ringing (which is accompanied by goondog howling in style of wolf), the doorbell going (barking in style of Hound of the Baskervilles)........ Big Copt (who was part of not sleeping until 5 as she was out with friends) slept through it all. Might have to go up there and play Its a small small world.

Sorry not around, been a lot of desperate gardening til 10 at night to make up for lost time with decent weather at last, and then yesterday we had very geeky day at the Harry Potter studios. Big Copt grew up with the books so was so excited to be there, knew the significance of everything there, and has ordered me to watch the films again as I got a D- for keeping asking what the various props were and didn't instantly appreciate why though she would like to be in Gryffindor she would probably be in Ravenclaw. In my defence I did read the books at the same time as her, and read the first few aloud to Little Copt, and saw all the films, and sat up all night reassuring Little Copt the three headed dog / spider/ etc. /delete as appropriate according to year, was not going to get her, so I did know main sets, horcruxes, that sort of thing but, nethertheless I am woefully ignorant apparently.

Also according to Little Copt very embarrassing as "57 year old women do not act silly on broomsticks" I'm not even 57!! and surely it's all that is left to a woman after 50?

Gigs It sounds as if leg is outchy but they are dealing with it? Will join you for cake and wine later, you must be so fed up of your medical itinerary detracting from time with the little gigs and your course. Are you having the radiotherapy up in town? I didn't have it but friend opted for Cromwell as at least a straight run in when tired.

I thought Big Copt was a terrible climber/ hurdler/runner as evidenced by having to restrain her with three harnesses in her buggy and practically having a personal cubicle in the A&E at St Mary's (now a posh housing estate) and a suspicious health visitor who couldn't believe any toddler would launch themselves out of their buggy on their head, or collide with doorposts at full tilt. However now grateful she didn't roam nude through Kew Mas though aged 18 months did escape harness in Kew Gardens to run from one end to the other, with me on crutches in hot pursuit, finally caught by thankfully nice people who stopped her going for a paddle in the lake by the Banks Conservatory........ She calmed right down once she got to school though.

EMIN It really is so much better after you have got the first one over, it couldn't have been as bad as I had built it up to be, and it wasn't. I would definitely ring to find out what is going on.

KK This is how I imagine your computer gadgetsin.com/uploads/2010/04/incredible_victorian_steampunk_comupter_and_workstation_1.jpg

Waves magic wand to everyone and cast spells for good night's sleep, healed wounds, muscles nerves and bones and to banish Cancer and all worries about it......

malt I thought the exercises were a bit tame, and clearly aimed at old ladies who weren't as fit as me, but then ended up overdoing it (mainly by driving too soon), and having problems with healing, but I had a mastectomy with full node clearance. I did end up with my shoulder freezing up as well, when I was laid up in hospital after the first chemo.

Just take it gently but stick at it and if there is any sign of problems contact your BCN who should be able to get you a session with a physio. I loved my physio, who seemed like the only member of the medical profession who was making me better.

Thanks for the comments! All the best ladies xx

Thanks copt I have thought the same about the exercises ! No problems so far and I'm not driving yet though I feel like I could
Think I'll just try doing little and often

Missed loads as usual. Like the idea of a night time trolley though. I'll be there at 3am, as that's always when I wake.

Earth, definitely ring them. That's shocking that they haven't bothered to tell you what the appointments are for even. Lovely to have that visit to look forward to though. Must be wonderful to see how they're all getting on.

Your friend's baby sounds sweet, Trice. Hope you get lots of cuddles.

Bugger about the waiting for Friday, Betsy. Must feel like an age away.

Malt, I think just keep pushing the exercises, so if you can do one easily it's time to move onto the harder ones. Don't go mad though, or as Copt says you'll suffer.

DS couldn't rival your brother, MAS, but he did get everywhere as a bum shuffler, then instantly running. He seemed to miss the walking slowly phase.

Gig, hope rads appt isn't too ouch. Seem to remember you have to lie still for ages while they measure, which am guessing might be uncomfortable. x

Who have I missed?? So many people on here atm. Hope everyone's okay-ish. I am having a useless day. Cat got into a fight outside at 6am, so had to go out and sort that. Manky ginger tom to blame. Then have spent all day at pre-op clinic as they lost my notes. Scar revision and implant exchange on Thurs. Deeply trivial, I know.

Ladies - I hope you don't mind me joining you but I am starting chemo next week and I have a question you may be able to help me with.
I have been offered the 'blue hat' head freezing thing - have any of you had any success with it and did it hurt loads?

thanks
K.

Hi KitKat - course you can join, though you have now made me want a kitkat I had ColdCap. Honest response is it doesn't hurt past the first little bit while your scalp gets used to it, then it just feels weird and heavy. Pluses are it works for a lot of people. in my case I had a huge bald patch on top, but kept enough fringe and at back to put big scarves over and sort of get away with it. Negatives are it's not too pleasant and means your in the unit each time for longer. If they haven't explained yet, they have to put it on for a certain amount of time before they can start infusing the drugs, then leave it on for a while afterwards too. Can't remember the exact timings as it's 3 years ago for me now. You look a complete numptie when it's on too. Not that that matters, but it's worth noting!

As this is an honest sort of place, might as well that I had a sort of weird reaction to it, so I threw up every time it was attached. They couldn't work out why, so either it was pavlovian, or it was a reaction to the cold. Clearly I am weird unique though as they hadn't come across that before. Even with that it wasn't too bad and I used it each time. My Onc said why not try it, and on balance I'm glad I did. Apart from anything else it was a bit easier for my then 5 year old as I didn't get so many of the head tilting sympathy looks, as mostly nobody could tell I was having treatment. Ask anything you want, but hope that helps a bit.

Hi Kitkat sorry you are here but welcome I've not been through chemo yet so can't offer any advice but just wanted to say hi

welcome kitkat - can't offer any advice on cold cap as having oral chemo but do join us.
I have some double choc cookies to offer the trolley today before I return to my desk.

welcome kitkat :) although sorry you have to join us.

I can't advise on cold cap as I'm the new girl round here, only diagnosed a couple of weeks ago and still waiting to find out what they are going to do to me first...

to everyone else whilst my head is briefly extracted from the sand, it's my new coping technique

Hi kitkat I din't have chemo, but I'm someone who would try the coldcap once and see if I could put up with it/ thought it would be worth the hassle.
Hope your cat is ok smee. We try and.keep purs in overnight but with the.light mornings he is often out at 6am. Will send +ve vibes your way for Thursday
gigs vanilla prunes sound nice. Hope rads measuring is straightforward.
I slept all morning. Have caught up now but annoyed with myself for missing the day. Work tomorrow.

thanks for the replies. So - I have to decide by tomorrow - if i don't have the cold cap I can have the chemo at home and it will take 45 mins. If I do give it a go I can either go in to the clinic and altogether will have to have the cap on for 3 hrs - and will need DH to give me a lift (at least the first time). Or can try a cap that will have to be frozen at home but does not have to be on for so long (I think).
No guarantees of course but I'm thinking of giving it a go. I can still have the day 2 injection at home though.

Tricky isn't it, kitkat. Might be worth a while, but others have said it's hugely liberating just to go for the hairloss thing too. Think there are pluses both ways. Which chemo are you having, is it FEC?

Betsy, can you eat treats off the trolley with your head in the sand?

Hi kitkat, sorry you are here.

I had the cold cap. It worked for me, I kept my hair (mostly) . I look odd in a wigwig and don't suit hats so it was worth the extra time for me. I took paracetamol for the headache but didn't find it too bad. I wish they did a cold cap for your eyebrows!

I had a lovely morning cuddling the tiny baby. She is very little and is still curled up in a ball at rest. I always forget how soft they are at that age! Gorgeous. The family have one of those teacup sized dogs which is a real character and spoiled to death. The dog is completely torn between love and raging jealousy towards the new arrival. Just like a sibling!

Hi there - been out for the day - doing painting and dog walking with a couple of friends (a certain amount of cake was consumed naturally)

Hello Kitkat and welcome, but sorry you have had to join us. I had cold cap when I had my chemo, -unfortunately it didn't work for me - my hair fell out after 2 cycles so there was no point in carrying - but I think that was possibly because I have a smallish head and the hat was one size fits all male or female/huge head or pin head like me and it was too large! My SIL also had coldcap and didn't lose her hair, so it's definitely worth a go, if the hair loss is something that you would rather avoid.

As to how much it hurts - the answer is it does hurt a bit -it is very cold, and as soon as it becomes bareable they replace it with another cold cap they have hidden in a freezer. It is like a very extreme ice cream headache, but it is doable, albeit not enormous fun. I would definitely say have a go and see how you get on, don't absolutely bank on it working because it may not, and if you can't stand it and find it too uncomfortable you can always stop using it. You may very well be less of a wuss than me and find it fine.
hope that is of some use to you - they force you to make so many decisions about stuff don't they?, when you just want to get through it and get it all done.

Earth - great that your chemo appointment has come through - I would guess (although not sure) that the first appointment is with oncologist for blood test general health check to pass you fit for chemo, and the next one is the actual chemo itself (although definitely worth checking so you know what to expect - whether you are going to be there half an hour or a few hours)

waving to all, -like the sound of the night time gardening copt. I may take that up (I have a lovely neighbour across the road called (believe it or not) Mr Tickle ) who gardens until darkness completely descends. We have great gardening chats and swap plants.

Waving and love to all - off to catch up properly on all your posts.

Has anyone read The Blue Room by A L Kennedy? - I am reading it for book club and am struggling, - does it improve after the first forty pages? God I hope so