***TAMOXIFEN number 19***

[MaryAnnSingleton]

ta daa !

Hi everybody - I wondered If I could join you for a bit of support.

Have just been diagnosed with a sarcoma . Back story is had dd2 two weeks ago and during pregnancy what started as an ache in my hip/bum developed into a big lump on my bum (glamourous). Complained about it to dr and was told to wait til baby out.
Long story short MRI scan and biopsy show it's a sarcoma (although seems to be just one lump) and are reviewing ct scan to see If any impact on my lungs.

The lovely specialist team at stanmore dealing so will hear tomorrow the plan (surgery likely next week to remove lump but whether need radio therapy etc).

Am scared shocked and all a bit overwhelmed.

hello gigondas and sorry to hear this- a soft tissue sarcoma ? (not that I know much about sarcoma) Please do hang out with us-we can hold your hand and hopefully support you through this. x

good morning to all and welcome (if thats the right word?!) to you Gigondas. Im quite new here too, diagnosed cancer of the vulva on 6.01.2012, i have just had surgery a week ago and waiting for results of lymph nodes.

Im so sorry to hear of your diagnosis, how overwhelming for you with a new baby too. The ladies on here are great, and will help you to cope, as they have me.
Do you have support in RL? i suppose it is early days but i have found my hospital fairly good - i have a macmillan nurse/cns who i can call with any questions.

Please just rant/express anything. I am finding this a huge roller coaster , the diagnosis, surgery, recovery, possible treatment for the future, its all a huge deal and I have found getting as much RL and MN support as possible is the way forward for me.

Im sending you a hug

Hi Gigondas, blimey that's tough. Have they let you come home? I'm guessing so. Biggest thing I've learnt about Cancer is there's lots they can do these days, so I'd bet they can help you. Stick with us and let us help you through. We totally get how scary it all is.

Kurri, love the idea of your mother hitch hiking with a gun! She does sound fantastic. How is she getting on living alone these days?

Jane, well done to your dd. Her portfolio must be impressive to keep getting offers.

Hello ILGC - good to hear your DD's getting some positive help now. How are you though? Really hope you're finding time for your own emotions too. On a lighter note, I saw GC's new film at the weekend and have to say that your intended is looking a bit raddled these days. Possibly intentional due to the part, but still. He is very good in it, though the film's a bit useless.

OneinEight, I still can't remember the name of the hair wrap things - can anyone help? They're those hugely adaptable stretchy bands of fabric things..

Topsy, hope DS doesn't give you the lurgy back. Hide all fbs - wouldn't' want him to get too much of a taste for staying at home.

Holsten, how are you today?? Did you ever hear back from that Macmillan Nurse?

MAS, any news on Patience? I hope she's comfortable at least.

So very cold. Lovely plumber stopped boiler from collapsing, so that's good. Have persuaded DS it was too cold to go swimming after school today. It's a half hour walk each way, which isn't much fun in this weather. I bribed him with toasted crumpets and extra tv.

Meant to add that I'm thinking of you Ned. Hope the Path results are as expected and you know what's next. x

Thanks for nice welcome - its good to be here even If I would rather none of us were if that makes any sense.

Yes it is soft tissue sarcoma Maryann. Basically a big lump sitting on my left buttock .

Holsten - sorry to hear about your diagnosis. When do you hear about lymph nodes?

Is it normal to get this diagnosis and panic and think I am going to die? I found it quite hard to take in . I really want to try and be strong/positive but my instinct is to cry and be scared and think this is the end. I also keep (uselessly) going over what I could have done differently. I did point out hip was hurting and say there was a lump- went to physio and dr but none of it was taken seriously. The lump only really became obvious about oct/nov and they scanned it in December (to see if it was a clot) . I suppose this is fruitless but am worrying if I let it run on too long (although also know as I was pregnant there was a limit to what could
Have been done).

I am very lucky as husband is fantastic and been very supportive/pragmatic. However I think his way of dealing with it is to put it in a box and trying to make it one more thing on day. Tomorrow I get phone call from hospital with results - he is due to work and is reluctant to be at home (I know he would if pushed it) but seems to be more a reaction based on him needing to keep going at work as needs to keep things normal and support us. I think this is his way of coping which I understand as I do worry about how he will cope/support as I am relying on him so much.

and also have my mum who had a cancerous secondary lump and radio therapy about 6 Years ago so has been very good.
My dad who Is a Gp is finding it hard- I had sort of expected him to be the strong one but he was very shocked. He is in some ways quite frail (is a recovering alcoholic) so although I know he loves me, he is not finding this easy .

Smee thanks- am amazed ds wanted to swim as its freezing !
Yes am at home which is good.

Yes to fear of death, Gigondas. When they diagnosed me, I just assumed that was it. Thing is for most these days it isn't at all. A friend of mine really helped simply by saying her dad had had cancer twice . He's totally clear now just like your mum.

Cry, weep and shout though - it does help and it would be weird if you weren't scared and angry. Whatever you face, it will definitely get easier once you know your results. Sounds strange, but the unknown is genuinely the hardest part. With your DH, he sounds very male! Mine was / is a bit like that. I used to insist we shared a bottle of wine and talked about what was next in terms of treatment and options and also what I felt I needed. Worked well for us as it made him sit and the wine helped him speak. Also made us closer, which was lovely. Cancer's bloody awful, but you can and will get through this. xx

Thanks Smee. Part of me is determined to get through this and knows as you say people do beat it and indeed cancer is one of a number of serious conditions like diabetes that if not managed will kill you.

The other part is scaed

I like the idea of wine and chat. I can see how it's important to keep things normal as with this , 2 small kids (ESP as worried for dd1 who is 3.5 and has had new baby sister plus unwell mum as basically been house bound due to this , pregnancy and c section ).

Hi Gigonda Glad you found us though sorry you had to .
Re the rollercoaster - from what I remember of having babies, the first few months of motherhood were like that anyway, what with hormones and sleep deprivation. To add this worry into the mix is unimaginable. Yes, as I said on the other thread, I think we all have found this waiting is about the worst point on the journey. You do hear the word and think "I'm going to die", but as others have said, the vast majority of people don't die nowadays (well, we all do eventually, but you know what I mean), and, as you tell people, you'll find that all sorts of people you know have endured some form of cancer and are back living a normal life and you never even knew. Everyone has a mate or a colleague or a sister or a Mum or a neighbour or a cousin who has done really well. You have to believe that you will be one of the majority. In the mean time, ask away, or come and rant (we all need to get angry sometimes) or just chatter away about trivia. Lots of lovely ladies on here will hold your hand and talk you through it.

Hard to be normal with a young baby, let alone a toddler too and now a cancer diagnosis!! I'm guessing on one level you can be rational and know though scary, that something can probably be done. On another you probably feel more terrified than you've ever felt and want to curl up and weep. Which of course you can't for long as you have two hugely dependent children. Cancer's a sod and a half, but odds are that you will reach the other side. If we can do it, well so can you.

Hi Gigondas , welcome to the "C" club !
You are perfectly normal , I have my entire funeral planned out . And as my loved ones don't really want to hear such talk , this is the perfect place to offload all those thoughts .
Welcome to what is (amber coined the expression I believe) a new kind of normal !

Once you get your full results and treatment plan , it all gets much smoother (I won't say easier !) to deal with .

Thanks all- and I like the idea of new normal
And you are right re it being an odd time anyway so why not just throw this into the mix? Gives me something to think about on night feeds.

And it's good to know that this time waiting is bad- you fill the unknown results with the worst outcome and of course am particularly likely to do that given already had "worst news" yesterday.

I sort of knew it wasnt normal and that outcome would be surgery but I was hoping that it would be yet another scar to add to my collection (I seem to collect scars when I have kids like other people get tattoos).

I can't tell you (well I probably can) how reassuring it is to be here.

I too have very panicky 'im going to die' moments but these are calming down a bit now I have treatment ongoing. It makes you focus a bit more. I can only do one day at a time!
Currently horizontal with possibly a wound infection, waiting for a nurse to call or hopefully visit. Took rather too many calls to get sorted. Lucky for me dd (4) is at a playdate after school
Gigondas; hope you are 'ok' and managing to enjoy your new baby
Good thoughts to everyone having any treatment/waiting for any results or treatment

Hope the nurse turns up soon Holsten

On no, Holstein. Why do you think it's infected?? Really hope it's not.

Hello Gigondas - I've read through all the posts and just wanted to add that whatever you feel is normal, so just express yourself freely here. Congratulations on the arrival of dd2. Hope you enjoy her, what with everything else going on. Your DH sounds great, similar story with mine re the coping strategy. Waiting for results is the hardest bit, once treatment began I somehow felt a lot stronger.
Holsten - I'm getting a bit that you have not been "seen".

hope it isn't holsten and that nurse shows up soon.
gigondas a hug for you
smee Patience is being moved to a nursing home (when suitable one is found) -her present one is unable to administer morphine- no news really-her youngest has been in touch and is visiting her today.
Hope your boiler behaves..

Afternoon all

Hello and welcome to you Gigondas, - but sorry you find yourself here. It must be especially hard having to deal with all this with a new baby, I know you new babies are exhausting, but you expect to feel a lot of joy as well, - having that interfered with by a scary illness must make feel pretty pissed off with the unfairness of it all - But hopefully you are still able to enjoy the early weeks with your baby.

'I'm going to die' - yes definitely been there, all I could say to DH in the early days was 'promise me you'll take care of the children', - it's normal, especially when everything seems so out of your control. Its great you have supportive DH and family, as others have said once you get results, and a treatment plan, so you know how you're going to tackle this unwelcome intruder into your life, you will start to feel calmer and less panicky. Stick with us, - and rant all you need to.

Holsten - hope they come soon to attend to your wound, I hope it isn't an infection, but with all the pain you've been having it does seem quite likely. - At least they'll get you on AB's and you should start to feel better soon.

OneInEight - hope you are feeling a bit better today - and that you managed to get to DS's assembly.

Loads of good vibes to Ned for today.

Mum coping OK Smee - thanks for asking, - she has good and bad days - she'd been reading some old diaries of Dad's yesterday, - which bought on the reminiscences. Not convinced she's eating well though, - she seems to have a baked potato and cheese every single day (not that that's dreadful, but feel she could do with a bit of variety, I think she's just using the microwave for her cooking) Might put together a little hamper of goodies for her to nibble at.

Love to all, - yoga this morning, now waiting for consultant to ring to see if my bloods from yesterday are in, - and with any luck she'll tell me I can stop taking one of my drugs.

Question - I have my follow up appointment with Onc' 1st March, (finished rads Monday 30th Jan) What am I to expect? Apart from the inevitable examination, how do they know the operation/rads "worked" ? Will I have a mammogram? Blood test, x - ray?
Lumpectomy Nov for ILC, nodes clear.
20 x rads Jan.
Thanks!

Not sure drift as my follow up didn't happen for quite a while after rads- the hospital was running slow and onc was overwhelmed and they decided to hand the job over to the surgeon who eventually saw me - just talked about tamox, how I was,examination etc..no bloods or mammo.

Gigondas, welcome from me too. Yup to feeling like you are at the moment. Until we get the results and know what's what, the sense of panic is extraordinary. I found I calmed down a lot once I knew what they were planning. If you've not got anyone to hear results with you tomorrow, hang about on here and there will be people who can hold your hand from a distance...I'll be out on site much of the day but many other splendid people likely to be about.

Driftwood, just had my follow up appointment with the Onc and she wanted to stare at the boob to check the skin was ok, felt it and under the arms, but other than that didn't do any tests at all. I see my surgeon again next month and I think his team do follow up tests then, but not sure which ones.

Shall add some more FBS to the trolley and leave out some for all.

PS no word from my consultant about any other appointments for me re the numbness...might chase again tomorrow...

Gigondas - welcome from me too. It's a bugger, though, isn't it?

Panic and feeling like it is the end is totally normal. I didn't buy anything for several weeks, because it seemed extravagant if i wasn't going to be around to use it I soon became my old spendthrift self again. It is a 'new kind of normal'. Stick with us, we've all been there and remember it all too well.

Holsten. Triple bugger for potential wound infection. As if you haven't been through enough. I am sending positive vibes for effective help fast.

Ned - vibes too for your results!

Drift - I think they'll just look to see how your wound is, how the skin is recovering, and then have the usual feel around. They'll want to know how you feel in yourself, physically and emotionally - all that stuff. I doubt you'll have any scans or tests. They'll also make check up appointments and the BC nurse may give you a toe curling talk about your sex life and getting it back on track, if it has got off. Just sing to yourself, in your head, it'll soon be over. (That's my advice about her talk, not her advice about your sex life, obvs )

a hamper of nice tempting things sounds a lovely idea kk - I think I'd be just like your mum as am pretty useless at feeding myself (apart from making sandwiches/cereal etc)I did live on either cereal or baked potatoes before I met dh.

Have been invited out to the pub for a ladies night with female neighbours - I know them to chat to in the road and at the occassional party but not friends as such- they are all v nice and miles younger than me and with little primary school age kids (though one has teen girls and 2 tinies) Am not going I think as I find these things very anxiety making and I do need to do baking for my mum's birthday. I know I'm making excuses..