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**TAMOXIFEN 35**the all dancing,fat boy snacking and drugs thread

999 replies

MaryAnnSingleton · 26/04/2013 16:15

yoo hoo - over here- bring the trolley...

OP posts:
EarthMotherImNot · 29/04/2013 10:08

Hello everyone. I've been in hospital for 30 daysShock it was a prison sentence in a way. It began with a sore hip and ended up with an op to put a pin in my leg from hip to knee.

The cancer is back with a vengeance. It's in my bones, primarily my spine.

I am terrified, and have never known pain like this before. I'm to see my breast surgeon and an oncologist this friday. I tried to ask the surgeon about a prognosis when he popped onto the ward to see me, what the prognosis is and his ever helpful response was "who knows"

I have no idea what if any future I have and I cannot stop bloody crying

smee · 29/04/2013 10:10

Oh Earth, that's awful. Of course you're crying. Pain alone would make you, let alone how scared you must be. Any idea when you can get home? (((((gently hugs from me))))) x Sad

MaryAnnSingleton · 29/04/2013 10:20

oh earth - a huge hug for you-I am so sorry- the pain sounds awful.

OP posts:
topsyturner · 29/04/2013 10:30

Earth I'm so sorry to hear this .
Have you got someone with you who can tackle the onc a bit more aggressively ?
It's too hard for us to do ourselves sometimes isn't it ?

Please keep talking to us , we will do what we can to help xxx

Copthallresident · 29/04/2013 11:32

earth joining in with the hand holding. Hopefully on Friday you will get some answers but that is a long wait, is there no way to get more information ? Have you a Breast Cancer nurse? 30 days would be like a prison sentence but they would not have gone to such lengths if they didn't think you have a future, they treat mets like a chronic disease these days and it is possible to live with bone mets for a long time.

gigs you bought the sun back with you ! Glad you are enjoying all the comforts of home. Are you getting lots of hugs from the gigettes, or have they still not forgiven you for the badger napping ? Did you bring the butler back with you? How are the aches and pains?

mas horrid periods are no fun. The infrequent ones I had on Tamoxifen were ridiculous which seemed weird, not enough hormones to get a regular cycle but then enough for it to go into overdrive Confused . Is there nothing the GP can give to help. The girls have inherited my problem and they find Transexamic acid reduces the heavy ness and pain. Plans for Dad,s birthday sound fun.

Another who avoids those games so I don't get sucked in , too many distractions as it is, though am ahead of big Copt on angry birds ( this is a big deal as she is sort of organically linked into any computerised device, does't even have to think about it, and it does her bidding, whilst they deliberately subvert all my attempts to do anything.) in retaliation she did a few levels of FarmVille on my Facebook and now I am constantly getting notifications from a couple of friends, I've no idea how to tactfully withdraw......

Big Copt another Scientist Ash doing Natural Sciences , also about to go into Third year, she has a research internship this summer at Moorfields Eye Hospital. Did the bugger sink your entire year's work experience or did you get a chance to do some of it?

hnd well done for disciplining and training Nurse Ratchett. I always think afterwards of what I should have said but at the time always feel I should be grateful they have done these things for me, which is stupid because whenever I see someone doing their job badly in any other context I am a real old bag. So I meekly let wonky oncys and Dr Grumpy's and nurse Ratchetts do their worst, and then say Thank you after Angry

jchoc the Endeavour they charge you for if the first one that was a on a while ago. I got a bit miffed until I realised 2 is the first one shown last week. I. loved you pictures of the Ford near Bingley, that used to be a treat when we were little , to drive through the ford. In the days when a colouring book and some pencils and a drive through a Ford were exciting Smile

Speaking of simple pleasures gigs we cleared out the shed this weekend and I thought of you when I finally cleared out the pond dipping kit we had for Crane Park, best fun for free around here. There is a platform at the end of the nature reserve island next to the shot tower and it is shallow enough to wade in wellies Have spent many happy hours there and it is a good place to take their friends as well as it doesn't seem to be an activity that occurs to alpha mums ...... If you do decide to add it to your bucket list I will give directions. Of course bloody Thames Water poisoned everything in it last year but I gather the wildlife and fish are returning.

Waves to everyone, hope it is a good week for those with appointment

KurriKurri · 29/04/2013 11:34

Hi all, have caught up with all your posts - but won't try to comment on all as it would be the world's longest post!

Gigs - great that you are home, hope you are feeling OK and not too sore, must be lovely to see the girls (and of course the lovely MrG)

Earth - I'm so sorry to hear your news Sad - you must be feeling very scared atm, especially after such a long period in hospital. I hope the onc and surgeon can give you some sort of information when you see them, that will help you understand better what is going on and what they plan to do about it. Is there a BCN at hand who could be at them meeting with you and help you tackle them for some answers?
Much love to you my dear, please do keep posting if it helps in any way. xx

love to all.

EarthMotherImNot · 29/04/2013 11:41

I'm out of hospital, sorry should have made that clearer. I came out on Friday gone. Weird but I thought everything would be fine once I was home, of course it's not, how could it be. I had radiotherapy on my spine while in hospital and was told it was to control the pain but that it wouldn't come into effect for 2-4 weeks, it will be 2 weeks tomorrow since the operation and on Wednesday it will be 2 weeks since the radio therapy finished. No let up of the pain so far. I'm on a lot of morphine as well as other pain killers but nothing seems to touch the pain in my hip.

Our youngest child is getting married next year, spring probably, I desperately want to be here for that. I need to know what the prognosis is.

Gigondas · 29/04/2013 11:44

Earth -hand holding too from another bone met type. The pain is the end isnt it?and my op was also sprung on me.

At the very least they should control the pain AngryAngry. Are you on nerve and ord pain ? You may need to switch as I am amazed How personal painkillers are-they changed mine when I was in and it did work-I went to oxynorm/OxyContin from morphine and was miles better for me.

Keep offloading here darling-being banged up and in pain is no good. It is fact that controlling pain does extend prognosis so that should help. I would cry too if been in that long.

Am really enjoying being home and yes mini gigs have forgiven and now like never away complete with meltdown as I am massively unreasonable not to let big gig take Barbie to school.

Pain ok but being really careful not to over do it. Even managed relatively quick and normal shower today -avoiding dressings then getting dressed with one sore arm is a trick.

Mas-sent you fb message x

Gigondas · 29/04/2013 11:46

You had op then radio!!! No bloody wonder you are sore- I am waiting 4 weeks minimum for radio to let op pain go so no wonder you are sore. Also being in bed a month will weaken you. Gentle hugs.

Gigondas · 29/04/2013 11:47

Oh crane park -can see the gigs loving that.

Sometimesiwonder · 29/04/2013 11:49

Hugs from me too, Earth. Sad

What Copt said was very wise - they must see a future for you or they wouldn't put you through so much. I also think you should see if you (or someone on your behalf) can talk to someone before Friday for help with pain and information, that must seem an age away. 30 days in hospital Shock must have seemed never ending.

Also, the femoral nail thing is agony, I know, even without all the rest of it to deal with. Hope you can get the pain sorted, my lovely.

Much love xxx

Gigondas · 29/04/2013 11:51

Copt right about prognosis as they said exactly that ( don't operate if you are a goner) to me.

EarthMotherImNot · 29/04/2013 12:08

I cannot begin to tell you lovely people how much that means, it's hope isn't it. I have a visit from a Macmillan nurse at 1.30 today, help, what should I ask. I feel so ignorant, I had convinced myself that after my mastectomy that was the worst I'd ever have to go through. Little did I know!

I screeched at Dh this morning because we can't find Betty, my fake boob, I mean, how do you lose a fake boob? I was rushed into A&E in my nightie so I know I didn't take it with me but can I hell as like find it. Poor man, it's not the end of the world but boy did he get itBlush

KurriKurri · 29/04/2013 12:17

Earth - I have a friend who was DX with mets in her spine two years ago, - yes she had a tough time in hospital like you to get it all stabalized and strengthened, - but she is now back playing badminton once a week, she has had some chemo but is having a break from that now, she is doing well and looks fit and healthy.

I totally agree with others - they would not treat you if they didn't think it was worth it.

I do think the hospital should be putting you in touch with any support groups for people who have secondaries, and with any kind of counselling that might be helpful for you (if you would like something like that) I'm sure it would help you to talk to others who are living with such a DX, - it an awful lot to be thrown at you physically and emotionally without any help to process it all.

Sometimesiwonder · 29/04/2013 12:21

As for the meeting with the Macmillan nurse - don't worry about what to ask, just sit and have a chat. She'll know what you probably want to ask, and you can just take it form there. Try to relax (impossible, I know).

As for losing Betty - poor DH. Don't worry, he can take it. x

KurriKurri · 29/04/2013 12:22

Regarding the Macmillan nurse (sorry cross posted) - I think you will find that she/he is very good at helping you say what you want and need to say - I wouldn't worry about not knowing what to ask, they are brilliant at just facillitating what you want to say. And she will also I'm sure be able to give you or direct you towards any information you may want.

Don't think that anything you may want to ask is silly or ignorant why should you know any of this stuff?- that is what they are there to help you with.

And it doesn't matter if you just feel like crying or whatever with her, - she'll help you.

smee · 29/04/2013 12:26

Can't say more than the others have, Earth, but I agree - that's a big op which they wouldn't have done if there wasn't hope. Macmillan Nurse will I'm sure be great at helping you find the things you want to talk about. Will your DH be with you when you meet the MN? Maybe it will help him too? Have you found Betty yet?! x

MaryAnnSingleton · 29/04/2013 13:00

pray to St Anthony to find Betty...
The mets thing is pretty hard to process and I agree with what the others have said...am sure Macmillan nurse will be helpful too.
gig would you be able to email me the pics ?

OP posts:
jchocchip · 29/04/2013 13:01

Gentle hugs to earth. Wonder where betty can be?

EarthMotherImNot · 29/04/2013 13:08

still no Betty I'm afraid but my BCN has promised me a new one when I go to see the consultant. Feels weird wearing the softee though. Yes he'll be here, he's grounded until he finds Betty Wink

I have some stuff in place via occupational therapy and physios, ie zimmer and a commode as well as a dinky little trolley for when I want to make tea etc. Luckily we have a downstairs bedroom, it used to be our nursery room when we were fostering so its filled to the ceiling with glorious memories, and I'm getting used to "downstairs living" We need to sort bathing out as we have a tiny loo downstairs but no shower or bath. I need Tizaparin injections every day and everyone one wants to have a go at puncturing me lol. Very gentle they are too, thank goodness for grown up children. The district nurse was happy to allow this and so far so good.

If it wasn't for the pain I'd feel well in myself so if we can get that sorted I know I'll come to terms with it. Other than the mastectomy pain I had no pain with the breast cancer so this came as a shock, as well as physios wanting me up and walking the day after surgeryShock

smee · 29/04/2013 13:24

Hooray for BCN, Earth. Bet you find Betty the minute you get the new one. Grin

Gigs, good to hear you're able to do a bit more. What's next? Are they going to get you some physio?

Waving to Sometimes, MAS, Kurri, Jane and any lurkers. Smile

AshokanFarewell · 29/04/2013 16:09

I've finally just caught up with all the posts!

Firstly Earth I'm so sorry, you've had such a rough month. I hope the Macmillan nurse is helpful and perhaps she can get some help for your pain before Friday, it is ridiculous of docs to make you wait when you are in so much pain Angry

ned I am hoping to stay on for PGCE if they'll have me. It's nice and local and their education department sounds fab. They offer the early years PGCE as well as primary so I'll have to decide at some point which to go for. I'm hoping to join their volunteering in schools programme next year for experience.

sand chemical engineering sounds tough, especially at Imperial, hope he's not too stressed out with exams. My mum did chem eng maaaany years ago.

gigs small world indeed! Glad you're settling in back at home :)

cop luckily my placement started in August so I worked just over three months before having to go on sick leave :) I was really enjoying it as well and if I hadn't got ill I think I would've hopefully gone on to work in the civil service after uni.

I'm having a bit of a bad day pouch-wise, I wish the damn thing would just sort itself out Angry but apart from that all good. I'm already getting excited about uni next term and been looking at diaries Blush

Had my blood taken by a lovely young male phlebotomist this morning. He didn't use a children's needle but still managed not to make a huge hole in my arm so I'm smitten Grin

notJenkins · 29/04/2013 16:28

Just running in to say first day done and dusted. All went ok and tere was not a lot of people in the office so did not have too much head tiltery going on.

I am running off to vacuum now. Another house viewing in an hour.

AshokanFarewell · 29/04/2013 16:58

Good news NJ, hope the viewing goes well.

KurriKurri · 29/04/2013 17:06

Good luck with the viewing NJ - my Mum had a couple of viewings over the weekend - one a couple who had already had one look round, - so maybe the market is picking up a bit with the nicer weather etc.
Glad work was good and only limited head tilting to contend with.

Asho - grr to pouch behaving badly again, - hope it sorts itself out soon for you. It's lovely to hear you are getting excited about uni, - good for you Smile - (I love diaries, - part of my secret stationery and organization fetish I think Grin)

Earth - hope the Macmillan visit was helpful for you this afternoon.

DH has been to a conference today and juts come home with one of those drumstick lollies for me and DD - the ones that taste like chalk - I love them Grin