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Our Gang! Come chat!

Re: Our Gang! Come chat!

Lexxy

 

Hi mate, give yourself time you have an awful lot to take in.  I am sure that they will miss you much more than you will miss them and that they will keep in touch with you whilst you are away. 

 

Hugs back at you xxxx

Re: Our Gang! Come chat!

Sarah

 

We are all here with you supporting you all the way my darling

 

Helena xxx

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Susan

 

Hey, how are you today xx 

 

You will be there soon with your treatment as well, it is quite weird I must admit because you appear to be on this constant conveyor belt of hospital appointments and then someone seems to just turn the machine off and wham thats it.  I have a review with my oncologist in March and then clinic apt sometime Sept/Oct but that is it now, compared to being there everyday for 5 weeks.  Mind I do not miss it :).

 

Appointments are like buses, none for ages and then they all come at once.  Let us know how you get on tomoz.

 

Well I have done another 5 hours today and am feeling ok.  I am aiming for 20 hours this week. The big day will be Thursday as I have not done one since Oct last year, eecckkk.

 

Post rads I have not had any major problems skin has been good, the nip has settled back down and the fatigue I have experienced has not been that bad at all.

 

Helena xxxx

Re: Our Gang! Come chat!

Em

 

It is so great to hear from you, have really missed your posts.  It will get better honestly, just remember how far you have come my friend, you've done so well.  I know its a pain when you can not have a wash/shower or anything like that.  Hopefully this will bring a smile to your face,  my excitement when I finished my rads and got past the two week post rads:

 

I can shave my armpits (and believe you me they were BAD)

I can wear deoderant

I can put on my own moisturiser

I can spray perfume all over my chest

 

The simple things in life 🙂

 

This is a huge huge huggle winging its way over the virtual web to you

 

Helena xxxx

Re: Our Gang! Come chat!

There seems to be so much happening for so many people on this thread.

Emma, I'm sorry you feel low at the moment but you aren't in your own. I was so anxious after my mx. I panicked even thinking about any of it and worked myself up into a real state. When I was in hospital the lady (I use the term loosely) in the next bed broadcast her exoerience of BC to the whole ward. I was beside myself. My usually very calm OH politely told her to shut up! I completely get where you're coming from but it will get better and you will deal with it. You will also get back to your glamorous self. I am giggling at Susan's description of her post surgery look.

Jane your treatment has nearly finished! Such good news.

Strudel hope your rads go ok today. It seems to have happened all of a sudden after all that waiting and anxiety. So glad you're moving forward again.

Susan glad you've got you're appointment at last.

Sarah don't be scared. You now have the best ever treatment plan just for you. You will get there.

Jo xx

Re: Our Gang! Come chat!

Great idea Scotty. Thanks for sharing xx

Re: Our Gang! Come chat!

Just come across this on another forum and thought I would post info. It's a charity called Smalls for All who donate lightly worn bras to women living in poverty in Africa. I hope post-surgery women don't think I'm being insensitive but I thought there might be drawers full of unsuitable underwired bras lying around.I'm not at your stage as I'm chemo first and don't know if this seems a bit of a crass thing to post? Anyway the link is http://www.smallsforall.org/

Re: Our Gang! Come chat!

What time is you rads appointment today Strudel - cause I'm following you around the threads like a lost sheep.  I start typing and by the time I have posted - you have already sneaked in Smiley Very Happy

 

 

Re: Our Gang! Come chat!

Morning all.

First off, it appears that I'm not the only Porkster here so please join me on the fat busting thread I've just put up.

Susan - whoop! Massive good luck, such a relief that it's come through.

Emma, you are being way too hard on yourself. You've just had a big operation that you had to wait forever for and you have the anxiety of results and treatment plans to wait for. Big hug.

Sarah and Lexxy, big hugs to both of you too. You have to have faith in your plans and us it's going to mean a hiatus from normal life for a bit but it will be worth it in the end.

I didn't think I was nervous about starting rads but I didn't sleep a week last night. Been up doing housework since 5.

WLE ladies, Does anyone else's boob still hurt? I keep getting hideous shooting and stabbing pains which take my breath away when they happen.

Re: Our Gang! Come chat!

Good morning. Lexxy I can certainly relate to some of the things you are saying. Potentially I could be off work for up to a year & that is frustrating me. My mother is going out shopping this morning & I'm feeling upset that I can't go with her to help

After yesterday's op I'm feeling a bit wobbly on my feet. I slept okay last night and was even able to lie on my right side where the wound is. I've just done some simple arm exercises I have to do 4 times a day & I'm exhausted. 

I'm taking it easy today. I've no other option as difficult as it might be for me to do so...

Re: Our Gang! Come chat!

Oh Susan that's great news for you! I too need to join you guys on the diet, I've gone a bit nuts since I was diagnosed and I should have been doing the opposite and piling in the veg and good stuff instead of cheese and pastry 😞

Re: Our Gang! Come chat!

Good morning all!

Bless you Emma, I hope the visit from your daughter gives you a good pick me up today. I agree with dry shampoo and perhaps a bit of an armpit wipe. Otherwise just think of yourself as a hippy in training.

Good luck today Strudel, I hope it goes well.

Sarah, I'm not quite sure how I feel. I haven't let myself cry or get upset about it, trying to think practically and make sure I have everything I need. I just keep thinking about how long it's all going to take, suddenly I'm sad that I won't be at work and that I'll miss things and worrying that they won't need me anymore. I'm sad about some of the comedy gigs we have tickets for that I probably won't be able to go to and I'm pissed off that it's another 6 months or so that I can't help my stepmum look after my Dad. Well writing that down has brought on a few tears which is probably a good thing. I'm off to make myself vaguely outside appropriate and off to work to handover and speak to HR about what to do.

Huge hugs to everyone, hope it's a good day all round x

Re: Our Gang! Come chat!

Sarah - I missed your post. Don't be scared, we are now on our way to recovery. We will get through this and I am such a sicky person (probably help with my diet though)

Re: Our Gang! Come chat!

Holy moly macaroni - guess who's got an appointment with the Chemo nurse tomorrow at 10am?

 

Sarah - I shall join you on the mediterranean diet - we shall book tickets and fly off somewhere nice Smiley Happy

Re: Our Gang! Come chat!

Susan - talking about weight 🙈 I've got a good couple of stone to lose and the doctor said I wasn't allowed to put any weight on and eat a Mediterranean diet 😏😏 ... it just isn't me but I'm going to try so hard xxx

Re: Our Gang! Come chat!

Good morning ladies ... woo hoo Emily, fantastic news for you .. I did chuckle at the side effect of your tamoxifen.. crying .. did it happen as soon as you swallowed it 😂

Emma - lovely to hear from you .. I wouldn't worry about looking glamorous, I certainly didn't .. I used dry shampoo for a week 🙈 But did attend to the armpits .. couldn't let that slip 🙈

I've had a really good cry this morning, still in shock I think about the chemo ... I knew things were all going too well ... now I'm really scared 🤢😪😢

Strudel, good luck today with your rads, report back later with how you have got on

Lexxy, how are you feeling about it all?

Everybody else, have a lovely day and I'm being honest when I say I'm not sure where everybody is up to as my brain is elsewhere

Sarah xxx

Re: Our Gang! Come chat!

Good morning all

Susan - I can't quite believe it either! The time although sometimes feels like it goes so slowly when you are waiting for results, actually goes quickly when you're having active treatment - I think you'll feel better emotionally once your chemo starts, and we'll all still be here for you.

Emma - sorry your feeling like this - I wasn't a glamorous patient either, neither am I a glamorous person when not a patient!! I went to visit my friend after her hysterectomy and she was lying on her bed with full make up on, looking better than I did in full health!!

Jo - bet the Dad at school will be mortified once he finds out - you did well not to tell him!!

Will catch up with you all later - got a Physio appt before rads today so need to get a wriggle on!

Jane x

Re: Our Gang! Come chat!

Hi Emma, it's good to hear from you.  I looked like I had been beaten and rolled in a carpet and chucked in a dumpster. I was purple, blue and yellow everywhere. I didn't wash my hair for over a week, but I did cheat and used deoderant wipes from day one.  I just did the bit in my armpit.  No matter what your histology report comes up with, they will sort it, I knew that if it was in my nodes I would have to go in for another operation (and I really didn't want to, especially as I was sick twice when I came round), but I would have done it.  If you have to have chemo, we will all be bald together my darling.  I hope you have a lovely day with your daughter.

 

Strudel - I'm with you on the weight issue, although I have a lot more than a couple of stones to lose.  I've never been bothered about being fat - I'm healthy and use to be able to walk for miles, but since I've done my knee (they won't replace it for another 10 years) I need to get the weight off to relieve the pain. I know we talked about it before, but maybe we should set up a fat thread and put down how much we have lost each week to encourage each other, whether it is on here or on FB. Good luck for your rads today.

 

Jane - I can't believe you are nearly at the end of your treatment, I wish I was where you are now.  Although, I'm not sure how I will feel once it has all finished, probably just burst in to tears. Hugs to you.

 

Helena - Good morning my lovely lady.

 

Hugs to everyone.

 

Susan

 

 

 

 

Re: Our Gang! Come chat!

Thought I'd better make an appearance. The last few days have been a bit of a struggle and whilst I've read the posts, it's been kind of difficult to put anything into words. I've had my dressings off and look such a mess. I have tissue expanders that haven't got anything much in them yet (they inject saline a bit at a time over a few weeks so the skin stretches ready for proper reconstruction at a later date). They look lop sided and all puckered with all sorts of dents and of course there are the scars right across. Looks like a bit of a battle ground. Then there's the fear of the lymph nodes and the histology in general. The reconstruction nurse who took my dressings off confirmed that they went further into my armpit on the right side which is the side that had the small ductal cancer not the one with the big lobular cancer which seems a bit strange. My right side is more swollen and painful than the left. Anyway just the talk of it made me feel panicked.

 

Basically my body looks and feels like a war zone, I stink and I keep bursting into tears. 

 

I can't can't imagine more of a contrast with the way I look and your lovely photo 3 days post op Alex! You look amazing. And your comment made me laugh Susan! Can relate to that. Alex you seem to be doing amazingly well. 

 

And talking of lovely photos, your glamorous granny with beautiful boy and super stylish headscarf bobbed up through the morphine haze when I was in hospital Ali and I don't think I commented! Fabulous!

 

I will get a grip today I'm sure. My daughter's coming round which will be lovely. She will help me get back on track I know and won't let me wallow too much. 

 

Lexxy and Sarah I hope you are feeling ok this morning. I can see the chemo is a shock but hope that now you know everything you can start looking forward to ticking things off and making progress. It sounds as though you are taking a very practical and positive approach to it. I am glad for you that there is so much amazing support, knowledge and experience from ladies on here who have been through the same. 

 

Emily I am so happy for you that you have avoided it and yes it does seem odd the be offered mx at this stage and can see why you wouldn't want that!

 

Strudel I'm afraid I'm with you on the weight loss thing. As if we don't have enough to worry about! I need to shift a couple of stone if I'm honest and thinking about how I can change my diet to have more cancer busting stuff and fewer calories. Doesn't sound like too much fun - and then there's the drinking too aggghhh!! I'm sure  there's a big opportunity here for a better, healthier life after all this is over but sometimes it's hard to keep that vision and resolve.

 

Elizabeth, it sounds as though they were lovely in the hospital which makes such a difference. It can feel a bit of a shock when you get home so be kind to yourself and take it slow.

 

i am going to make sure I keep up with this thread today and try to re-engage with the world a bit xxx

Re: Our Gang! Come chat!

Phew, Emily. I fell asleep on the sofa before you reappeared, so I'm glad it was nothing worse than cooking etc that delayed you. 

 

Strudel, I really hope today goes well. 

 

We've got pretty well the whole gamut going on here, from op plus rads, through plus chemo, to the backwards ones like me and Scotty with chemo first. It's weird how quickly it seems normal to go through it. I'm pretty sure that this forum helps far beyond the superficial support outsiders might see.

 

Anyway, enough of musing, I am going to grab a long bath before anyone else is up.

 

See you all later,

 

Ali xxx

 

 

Re: Our Gang! Come chat!

Brilliant news Emily. How strange to offer mx now but I guess it's a reasonable option for anyone not wanting rads. Did they offer mx originally? Anyway, great news that you're not joining us Feb starters xx

Re: Our Gang! Come chat!

Sarah, I did get my wig on the NHS. I got a voucher that covered a wig from a certain range. If I wanted anything from a more expensive range I had to make up the difference. The one I liked best was the one I tried on first and was from the NHS range. I can't post a photo from my phone and I'm ticked up in bed at the minute. It looks good though and friends kept in commenting on my new hairdo. It's short and straight as a pose to my natural curly mop. One of the dad's at school asked me this morning what had happened to my hair, had it all fallen out!! I was stuck for words because I didn't want to embarrass him by telling him the truth. He will be mortified when he realises, bless him.

I went wig shopping with a friend and made a day of it. I was given a list of salons but one in particular was recommended in Mancheater. We got coffee and biscuits and were well looked after. It was really professional and I got my wig cut and styled. We had a bloody good giggle as well!

Ask your BCN for advice on what is available. I also got one off the internet and was mortified that it was being made and sent from China. I had visions of something resembling a dead cat arriving by post. I haven't worn it yet but it is actually ok and was fairly cheap.

Re: Our Gang! Come chat!

Sorry Alex, I apparently can't read! Yes, they will explain what your treatment plan is based on what they found. They confirm your tumour grade, size and receptors, lymph node and lymphovascular status. I asked loads of questions but wrote them all down in advance to make sure I didn't forget.

Re: Our Gang! Come chat!

Alex mine took 13 days, 2-3 weeks seems about normal.

Thanks Jane. I'm not surprised you're feeling apprehensive about finishing. I am and I haven't even started yet!

I have made a decision that I really need to get some weight shifted. I'm not fat but I'm a stone ( or so 😊) off where I should be. So now I'm adding a diet to all the fun things I've got lined up for myself. Great!

Re: Our Gang! Come chat!

I'm okay thanks Helena. Coped fine throughout radiotherapy, but emotions are a bit to the fore again.  Think it's partly because the daily treatment is coming to an end, and I have my first counselling session on Saturday, so a bit apprehensive about the emotional response that will bring.  It's got yo be a positive move forward though.

 

Jane x

Re: Our Gang! Come chat!

Jan

 

It was only an extra hour today but I am planning to do 20 hours this week 🙂 it will be interesting to see how it goes as I will be working on Thursday as well and it is the first time I have done that since October, but I will be sensible if I feel I cant do it.

 

You ok xxxx

Re: Our Gang! Come chat!

Emily that's great news, I'm so pleased for you. I thought he was lovely too and very knowledgeable. We must have missed each other by seconds 😂 There was hardly anyone in there when we arrived.
I guess that's the end of our BCN's duties is it? I kind of missed having one of them there x

So I've gone off ordering some nail strengthener and dark polish and a water bottle to keep hydrated. I can see a lot of random parcels turning up over the next week as I see different tips about what I need.

Re: Our Gang! Come chat!

Well glad everyone's back, Em, Sarah, Lexxy and Elizabeth, bit of a mixed bag of results today but at least you know what your next steps are.

Stru - hope your rads are ok tomorrow - had my first booster dose today - bit surprised about where it was targeted! Think my surgeon had a good burrow to remove the tumour - was expecting boosts over the scar but they only touch the end of it. Was surprised when they showed me the scan at the numerous marker clips placed during surgery! Breast quite pink and my poor nipple is looking bright red - bit like rudolphs nose!

Helena - hope your longer hours have been ok today.

Love Jane x

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Thanks Strudel 😘 I'm on the rośe but having to try not to look at my drain as it's be same colour 🤑 Can anyone tell me what I will expect when I go to my results appointment post-mastectomy? Is this where they say if I need radiotherapy +/- chemo?

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lol Stru I was very honest when he asked me what I drank so I am now on a dry feburay..march ...april roll lol!

Definitely no MX . I was like, why offer it again now, I have already had surgery!!!

Re: Our Gang! Come chat!

Congrats Emily. I wasn't offered a MX even though I initially wanted one. The crying might be the wine 😉

Good to see you Alex, glad you're healing so well. Gorgeous photo Fromm the other day Bre - had to laugh at Silver's comment that she doesn't look that good on a night out - I hear ya Susan! 😂

Re: Our Gang! Come chat!

Emily

 

the radiotherapy is very doable, you just need to make sure that you drink plenty of fluid, moisturise well and get plenty of rest xxxx

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Alex

 

Yay well that is great news and must be such a relief xxx

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That's excellent news Emily - I can go back to sleep happy now ❤️

Are you going to have a mx then - how wonderful to have a choice.

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Gosh sounds like everyone is doing great! Saw my consultant today at the dressings clinic and he is very pleased how my mastectomy/implant is healing. He took one of the drains out as had ceased draining but the other is staying in until Friday as was still draining more than 50ml in 24 hour period (but not concerned). It's the drain under my mesh where the implant sits. I'm glad the other one is out though because it was quite sore at the site area.

Re: Our Gang! Come chat!

Emily

 

To be honest a couple of weeks after I started taking it I had times when I felt very emotional and sensitive but that has now passed off xx

 

Really good to hear from you

 

Helena xxx

Re: Our Gang! Come chat!

Oh and Ive taken my first tamioxifen...side effects crying appatantly lol!

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Lexxy I came out at 2.40 but couldn't see you. I wanted to hang around but Don said we looked like stalkers lol! xx

Re: Our Gang! Come chat!

OMG I'm sooo sorry I didn't mean to worry anyone, thank you so much for your messages xxx I just got lost in friends and family and cooking tea xxxxxxxx

 

I have oncotype score of 17 so no chemo. Oncologist was lovely....what did you think Lexxy? I'm almost disapointed that its not chemo, I had myself worked up to it lol! But I'm having the 3 weeks plus the 5 boosters of radiotherapy....I was quite shocked that I was offered a mastechtomy if I didn;t want radiotherapy!! 

 

I'm sorry sarah and Lexxy both have to have chemo. xxxxxxxx

 

I'm really reallysorry for worrying everyone xxx

Re: Our Gang! Come chat!

Sarah

 

I was thinking the same thing myself xxx

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I hope Emily is ok xx

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Jo - did you get your wig through nhs?? How is it? We're there a lot to choose from? I don't know what to do xx

Re: Our Gang! Come chat!

I feel okay but just need to remember to keep taking pain killers every 4 hours to keep pain at the bare minimum.

Next for me is an appointment with the oncologist on Wednesday & will get an appointment with my GP on Thursday to get a sick line for work & ask him or her to look at my wound. 

I asked my friend Gail if she would come with me to chose a whig & then we can go for lunch afterwards

Re: Our Gang! Come chat!

My friend Sally (my force of nature 5 years out friend) told me about wearing dark nail polish but I didn't really take on board why. Charlotherapy who's done 3 rounds of FEC definitely advised eating, helped with the the nausea apparently.

Elizabeth - welcome home. Glad it went well and fingers crossed for your results.

Little shout out to Emma - how you doing?

Re: Our Gang! Come chat!

I decided not to cold cap. I had my hair cut short before New Year and my roots needed doing so badly that I decided to let it fall out and then start again. I got my wig a couple of weeks ago and started wearing it so I am used to it now and so is everyone else. I'm day 8 and my hair has been growing (I know that will change) so today I got my OH to give me a buzz cut. I love it, so liberating. What I don't love quite so much is that I am no longer dark but predominantly grey!! Greater than my parents 😳 I have always changed hairstyles frequently so am determined to embrace my new look and see it as an opportunity to try something new when my hair comes back...perhaps a blue rinse at this rate!!

Ali, it's strange but I'm treating this like maternity leave. I don't feel guilty sitting on the sofa with my feet up, I've been knitting, reading and all the things I enjoy.

Jo xx

Re: Our Gang! Come chat!

Lexxy - I also read that cold capping can give you terrible headaches and I just didn't want that on top of everything else.

I have read and read and the one common thing is to drink lots of water before, during and after to flush the poison out of your body. It can have some juice in it, if you don't like plain water.

Some people fast, but my Nurse advised eating little light meals before hand, so that you can keep your energy up.

Re: Our Gang! Come chat!

Sarah - https://livebetterwith.com/products/onicolife-drops-for-chemo-nails/

I read that you should wear dark nail varnish and then that you should wear Sally's hard as nails - all sorts of different opinions. I bought these as you rub it in to your nails and cuticles and the ladies on here seemed to have a good success rate with it. I'm will just be trying to stop my nails from coming off the nailbed at the end of treatment.

Re: Our Gang! Come chat!

To be honest I thought it sounded worse than just letting it fall out and same as Susan, don't want to be in hospital longer than necessary each time. Interesting that it's also not particularly effective with FEC, think that's my decision made 😊 xx

Re: Our Gang! Come chat!

Susan - I'm not having the F bit of chemo .. don't know why as I see a lot of people do have it ..
What is the nail stuff you bought? I remember you getting some and where did you get it? Online?
I need to get my bum into gear .. xx

Re: Our Gang! Come chat!

Lexxy - I looked into it, but read that it's not very successful with FEC, and I didn't want to be in there any longer than I had to be.

My hair will grow back - I chopped 4" off yesterday, but it's still past my waist, so you can't tell 😂😂😂