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October 2018 Chemo starters

Community Champion

Re: October 2018 Chemo starters

Fiona...I was told by my physiotherapist not to lift anything heavier than 2 cups of water... no ironing.. no hoovering.. no nothing really.. altho, that's probably got a lot to do with my mx too I guess!

Did no-one give you any advice as to what you can lift or carry? 💪🏼

 

I wonder if the different chemos affect hair re-growth differently...I guess they will! I've probably had the one that stops yr hair growing for 20 years knowing my luck!!! 🙄

 

🎀

 

Community Champion

Re: October 2018 Chemo starters

Aneeebel, I'm so pleased to hear your hair is growing at last Smiley Very Happy It really does make you feel better, doesnt it, knowing that things are turning round.

Yes, the bcn actually gave me the cushion and it does help. I've been sleeping with a pillow which has helped but I'd probably look a bit daft walking round with it under my arm at work Smiley Tongue

My armpit quite literally blows up like a balloon but I'm going to have to work out the balance between pain and healing. I'm sure I'll get there, its just frustrating in the meantime. i'm fed up of being in pain.  I think I'm also doing too much because I'm a bit impatient and don't feel ill so want to get back to some kind of normal. Hubby says I shouldn't even be opening heavy doors Smiley Very Happy

Anyway, enough of moaning.

I hope you are all ok, lovely ladies xx

Fiona xxx

 

Community Champion

Re: October 2018 Chemo starters

Oh no Fiona.. What a shame you're having trouble with your arm...

You would have been better with a drain in! Mind you, they don't leave them in for ages...I had my two in for 13 days which is considered a long time, although they were draining quite a lot of fluid every day! 

Do you find the heart shaped cushion helps? I have 2 but I don't walk around holding them... Did the nurse recommend the cushion? 💙

My wound gets quite tight and the side of my body at the edge of the wound but there's not a lot to see...my physiotherapist said its fluid building up and my body has to learn how to disperse the fluid as I have no lymph nodes! My armpit is still completely numb...and my skin is still painful! 

The firemen would have to be very gentle with me..... 🚒🐮🐷🚒

 

i cant help you with your nails...I was on a different regime to you! 💉

My hair is growing at last....not as fast as yours (from the pic)... 

Hope you feel better soon....good call on the vino! 🍷

 

How are you Badboob? 🎀

Hows work ElliesMum? 🎀 

Sar_ah...is this your last week for rads? 🎀

 

Have a nice evening Ladies 🎀💗🌸 x

 

Community Champion

Re: October 2018 Chemo starters

I still can't get the image of you, Aneeebel, on the floor waiting for your burly firemen 😂

I hope you've all had a good weekend, the sunshine certainly makes a difference doesn't it 🌞

Well, I had to succumb again and get drained off today, another 250ml 😲I'm now the proud owner of a heart shaped cushion as my new best friend 😉💜 Apparently, while it keeps getting drained it doesn't get chance to heal itself. But the pain is too much if I don't get it drained. This bit to me is as bad as chemo. I hope the rest of you are ok and not suffering this.  To enable me to cope I've had to resort to a glass of 🍷 I know, it's not good but needs must 🤣

Question for you Ladies. How are your nails doing? Mine are horrible and I can see when I changed from FEC to T. Are any of you using ordinary polish or water based? I'm keeping them short as they're so horrible to look at but just wondered how we're all getting on? 💅

And hair? I think I'm getting some eyelashes,  eyebrows, lady garden and the patches at the front of my head are slowly filling in. I'm using the Lush New shampoo bar recommended by Shi and its good. I don't know if that's why it's doing ok on my head 👍🏻

I even went naked head on Saturday in public 😲 so brave of me. I wasn't comfortable but my head was too hot in the beanie. 

Sending you all bug hugs 🤗🎀🤗🎀

💜Fiona xxx

Member

Re: October 2018 Chemo starters

Haha never Aneeebel Smiley Happy 

Community Champion

Re: October 2018 Chemo starters

Thank goodness it was a strawberry that made you think of me Sar_ah...

it could have been worse!!!! 🍓🍓🍓🍓🍓

 

Hope you're all well 🎀🌻

 

 

Member

Re: October 2018 Chemo starters

Morning ladies, sorry (again!!) for me poor uptake on actually replying, although I have been dipping in and out to catch up i just never seem to get round to replying! 

I hope you’ve all had a lovey weekend and everyone’s boobies have behaved Smiley Wink 

its beautiful and sunny here, hope your all having similar weather! Even made it out to battle the carnage of the garden at the weekend, I think Aneeebel and her Lottie are what gave me the incentive Smiley Happy) my daughter came home from the childminders with a strawberry plant they’ve been growing on Friday and It made me think of you Aneeebel 🤣

i hope you all have a lovely lovely day xx

Community Champion

Re: October 2018 Chemo starters

Happy Mothering Sunday to you too, Aneeebel, and to all of you ladies who play a significant mothering role in the lives of others - be it as a step mother, godmother, aunt... You’re all wonderfully strong women and should be celebrated! 💕🤗💐

 

Love and gentle hugs to you all! Xox😘

Community Champion

Re: October 2018 Chemo starters

💗😘🌷🎀 Happy Mothers Day to all you lovely Mums... If your Mum is no longer with us... think Happy Thoughts! Have a fabulous day Ladies! 🎀🌷😘💗    

Community Champion

Re: October 2018 Chemo starters

Hi Kip... I was actually thinking that...although, I might order one but ask for a skin tone colour!! 👙🎀

 

Thanks for thinking of me x 👙😘🌸

Kip Community Champion
Community Champion

Re: October 2018 Chemo starters

Hi Anneebel... sorry for butting into your conversation.  I have Knitted Knockers too... love them.  If you need a waterproof one all you need to do is take out the stuffing from one and pop one of those shower scrunchies inside.  I do it for swimming and its excellent, you just wring it out at the end and it doesn't absorb the water!

Kip

xx

Community Champion

Re: October 2018 Chemo starters

Oh...you're a brain box Fiona... I never thought about the Knitted Knocker!! Hahaaa!

I'm so dateless sometimes!!! I've even got a 'softee' from the hospital too!!!!

Yes, I've got two KK's...one is green and one is pale blue! I need a waterproof one for when I'm floating around in the sea when we go to Greece! 👙🌞

 

As as far as I know...I think you can drive sooner than 6 weeks after a WLE! 🚙

My arm is quite painful, both my skin and inside my arm...as is the skin on my shoulder blade... Which is due to nerve damage as you know...💪🏼

 

Have a good day x 💗

Community Champion

Re: October 2018 Chemo starters

Hi MBJ

 

I started chemo in October, had my last one on 25/01/19... I was on TCH and Pertuzumab which was pretty harsh! I had a single Mx and full node clearance on 6th March, so I'm still recovering from my operation, no recon as yet as I'll be having radiotherapy!

I started Letrozole 12 days ago but I feel okay on them...I was a bit dubious about taking them as I've read lots of negative things but I don't feel any different in myself to be honest! I'm am prone to side effects from medication so hopefully I'll continue to feel okay on them! 💪🏼🎀

Can you not contact your BCN just for a bit of reassurance? You can't be the only person to have declined chemo but you've still had cancer....that's what they're there for isn't it! 

Hopefully you'll find the Moving Forward course helpful...you'll have to let us know how you get on! 

 

All the best x 🎀💗👙

 

Community Champion

Re: October 2018 Chemo starters

Thanks Aneeebel, I certainly hope it is. Do I seem calm? Maybe I am because while the wound may be open it's now just a pin prick of a hole and any fluid coming out is healing it. That's my thinking anyway, I may be completely wrong but everyone who's looked it says it's clean and no sign of infection. I don't think I've got my boobs out this often since never 😉

That's something else I forgot to ask about - driving. I'm going to do a test run this weekend I think and see how I get on. Providing the fluid doesn't build up I should be ok. I've still got a tingling sensation though in my arm which I presume is the nerve damage trying to repair itself.

Ibandronic is the name of the tablets I'm on, the bisphosophonate. I wasn't given a choice of tablet or injection. I think your drip may be Zoledronate? 

As for your fitting, what about your knitted knocker ? I love that name, it makes me giggle 😁 I bet you've got a couple of brightly coloured ones haven't you? 😎

Enjoy Sainsbury's. I hope your hubby is better behaved than mine when we go shopping 😂 He does more walking than me because he wanders from one end to the other and back to the beginning instead of being logical 🤣

🎀🤗🎀🤗

💜Fiona xxx

MBJ
Member

Re: October 2018 Chemo starters

Hi Aneebel

I am from the February group, but was interested in your post as I started on Letrozole 12 days ago too. I am not noticing any side effects at the moment. I started on FEC in February but had neutopenic sepsis and was really ill. So decided with my oncologist to stop doing chemo. I have had a mastectomy with reconstruction and lymph node clearance (just 2 nodes positive). As you can imagine deciding to stop chemo was worrying it I did not think I would have survived another cycle. 

It's a strange feeling now I feel a bit alone as no input from BC nurse or Dr's not that I wanted that in the first place. But it becomes a bit of a safety net.

I am going to a moving on course on Monday to see if that will help me feel more confident in my health and getting on with my life 

I would be really interested in how you feel at this point in your journey.

Marie x

Community Champion

Re: October 2018 Chemo starters

Fab news about your wound Fiona... Maybe it's settling down!

I must say...you seem very calm about an open wound, I'd be back to the hospital for them to sort it out!  🎀👙

I didn't know you get tablets for the bone thing (the name escapes me!) -I was told I'll go in every 6 months for a drip which takes 15 minutes! 🤕

I know what you mean about 'feeling lost'...I was half waiting for a 'but' after my surgeon told us the results... he was probably wondering why I wasn't jumping up and down with excitement!! 💪🏼

I did chuckle though...because he was trying to help me back into my gown after he'd checked his handiwork but he couldn't find the sleeve...I said Oh, you can tell you're not used to this...the nurse said No, he's more used to taking them off!!! He just said Yes, I know! Hahaaa... 😂🎀

 

My hospital seem to be on the ball to be honest... I've even received an appointment for a 'prosthesis fitting' -I have to wear a well fitting bra apparently...how the heck do I get a 'well fitting bra' for one boob!!! Answers on a post card.... 😂👙🙄

 

I'm waiting very impatiently for my hubby to take me to Sainsburys...hence, the ramblings! Only another 2+1/2 weeks and I'll be driving myself to Sainsburys!! Yippee!!! 🚙🚗

 

🌸🎀👙💗

 

 

 

Community Champion

Re: October 2018 Chemo starters

Gosh ladies, I've been busy working while you're all rambling on in the nicest possible way but I do love it, you make me laugh, smile and cry all at the same time 🤣😂

I'm on tablets every day rather than an infusion. I have to take them 30 mins before food or drink first thing in the morning then sit or stand for 30 mins to ensure it goes down properly 😲

It's surprising how different policies seem to be in our respective hospitals. I felt a little lost yesterday after my appt. I didn't expect to see the surgeon but rather the registrar so I was thrown by that but he just seemed to tell me the results then that was it. I'm being referred back to oncology for rads but that's all I know. Oh and mammograms every year for 5 years. I've no idea about any other scans. I had bone, ct and mri scans before chemo and mri after but that's it. It sounds like we need to be at Badboob's hospital, they seem really on the ball, and they give your boob a cod liver oil tablet 😉

My wound didn't leak last night 👍🏻and I'm keeping a close eye on it today 🔍I've even progressed to a post surgery bra today rather than the Charlie Dimmock look I've adopted over the last week 😉

ElliesMum, I think we all want your family, your mum for baking, your daughter because she's just adorable and your MIL for her supervisory no nonsense skills 😂 We've changed our garden to a low maintenance one but I still need help and advice 🤔 And Aneeebel, your lottie time sounds perfect 🤗 I get my peaceful moments when I'm out walking the hills around Matlock 😚 

I'm being hassled by my hubby to get on with some work again, he's such a meanie  😠

Have a great day today ladies, enjoy the sunshine 🌞 I need to do some arm stretches so I'll put the washing out 👍🏻

🤗🎀🤗🎀

💜Fiona xxx

 

Member

Re: October 2018 Chemo starters

Aneeebel is right!  Call your BCN re Echocardiogram. I had to have another prior to restarting Herceptin last week. I was amused that my heart function has actually improved! 🤣! Must be the weight loss or drugs! 🤪.My hospital has already booked me in for two further echos. Sounds like it’s slipped though the net! It a full time job this cancer nonsense 😂😂. I am seeing my oncologist on the 8th April after I’ve had my results from the breast surgeon. They run a duel clinic which definitely helps with appointments.

 

No apologies for long posts! I do love a bit of a ramble myself 😂😘🥴.

 

Hugs

 

 

Community Champion

Re: October 2018 Chemo starters

ElliesMum...why don't you ring your BCN for advice about the echo and follow on procedure...

When I was diagnosed I had an MRI, Bone Scan, Echocardiogram and CT scan...Ive also had another Echo shortly after my last chemo and as you're on Herceptin you should have an Echo every 3 months! 

It might put your mind at rest if you had clarification!

I'm seeing my Oncologist next week so I'm going to compile a list of questions...🤔

 

Tell your MIL she's welcome to come to my lottie... I'm a very good supervisor!! 😂😂

 

Have a lovely day x

 

Community Champion

Re: October 2018 Chemo starters

Haha Badboob and Aneeebel, you would be very wise to enlist the services of my gardener. He’s great! Our garden was a total shambles before he started working on it a year or so ago. My mother in law demanded that we get a gardener as my hubby and I both work full time and are totally useless (no green thumbs here). The mother in law now comes over to our place during the day when the gardener is here to boss him around. 🙈 I could send her along with the gardener, to ensure that he does as he’s told! 😂 (To be fair to my MIL, she is a lovey person and very thoughtful - she just has strong opinions... no wonder I have a fiercely independent toddler!)

 

Fiona, excellent news that chemo and surgery have achieved the desired result. Woohoo! 🥳 How is your wound? Please do follow Shi’s advice and go back to your unit if it isn’t resolved. I’m thinking of you and sending good wishes your way! Fluid dramas aside, I hope that you’re all recovering and that each day you feel a little better than the day before. Be kind to yourselves! 💕💐😘

 

I’m really pleased to be back at work and back into a routine, but I do feel a tiny bit abandoned... The last time I saw my oncologist was just before my last chemo session and I had rads at a different hospital. I’m supposed to be having echos (still have 14 herceptin injections to go), but seem to have fallen through the cracks somewhere. I asked the nurse at the unit about being seen again/needing an echo and she assured me I’d get a letter at some point with an appointment date... so not sure what to do. 🤔I had surgery first, and only had one positive node (out of 3 taken), HER2+ and ER/PR-, but didn’t get clear margins. No one has mentioned what follow-up treatment will involve, aside from herceptin. Not had any scans since diagnosis. Was this discussed with your oncologist? Maybe I should call the unit and ask for a follow-up appointment? It’s so hard to know what is “normal” practice with this whole situation!?!

 

Apologies for the essay above! I promise my next message will be more succinct 😂. Have a lovely day in this gorgeous sunshine! Xox 💐 ☀️ 

Community Champion

Re: October 2018 Chemo starters

Badboob...my dentist said if i did need any teeth taking out she would refer me to a specialist..but as it stands my peggys look ok so I'll be starting the infusions at some point! I see my oncologist next week! 

I've started my Letrozole...dont seem to have any side effects but I've only had 12 up to now! Fingers crossed.... (I'm well known for my side effects to meds!)

With regards to the lymph nodes...now we've had them removed...our bodies have to learn how to disperse the build up of fluid.. My physiotherapist said I have to stroke my painful arm with different textures as I have to teach my brain that this is my arm...as the nerves have been damaged the connection is lost! It's quite an ingenious thing the body isn't it! 💪🏼💪🏼💗💗

 

I'm not particularly down...but it's just so frustrating not being able to do much but it's for my own good... And when I can faffed about at the lottie the other day I was in agony!!!! So I have to do as I'm told!!! I'm under strict instructions from my daughter's! 💗

 

Good idea to borrow ElliesMums gardener...send him over here when he's finished yours! 😂🌻🌲🌳

 

🎀🎀

 

Member

Re: October 2018 Chemo starters

Morning ladies 🌞 from another lovely sunny spring morning. Doesn’t it make a difference to see some bright sunshine! 😁😎

 

Congratulations Fiona on your results 🎉🎉. I am really humbled by the fact they took so many nodes! No wonder your poor system is struggling to cope. I feel a bit of a fraud with my 2!  Don’t worry about having Bisphosphonate. I had my first infusion with chemo 2. My oncologist insisted I spoke to my dentist before as they are worried about teeth extraction during treatment. My dentist was useless, refusing to give me any advice but in the end I decided that the risk was worth it. Being HER2+ bones secondaries are common! You will have a DEXA scan to measure your bone density (easy peesey) and calcium tablets to take daily. The only other side effect has been flu like symptoms for about 24 hours after wards. A bit alarming during chemo but I was warned so just went to bed with a couple of paracetamol. There is an excellent information sheet published by Macmillan if you need more information, search zoledronic acid.

 

Aneeebel, I am sorry you are feeling down🤕 it’s frustrating that this treatment is seemingly never ending. I am starting to get annoyed with well mean friends who are now saying, ‘oh you have now finished your treatment’ er NO! I have results to come ( and as we know there are NO guarantees that they will be clear! ) then radiotherapy, plus Herceptin for a year ( and zometa) then Letrozole for 10 years! Quite apart from the fact I have no hair, a wonky boob and my nails are falling off! 🤬 Your Lottie will be fine and I am delighted that you can sit and have a brew admiring your patch. I love my little space and it is frustrating that so much needs doing and we just can’t do much at the moment! Perhaps Elliesmum’s gardener could pop round for a bit and give us a hand😉.

 

ElliesMum, look after yourself, gosh it must be extra hard with a busy job and little one to look after. But on the other hand it must be wonderful to have some normal routine back into your life. I can’t wait to get back to all the things I use to do. 😁👍

 

Sarah, I hope life is treating you kindly as well.💐🌻

 

Hugs

 

 

 

 

 

Community Champion

Re: October 2018 Chemo starters

Morning Girls... 🌻🌹🌼

 

How are you doing Fiona? Hopefully you've had a good night...and your wound is behaving! Did anyone give you any indication as to when it may heal itself or are you going back to the hospital? 🤕🎀

 

ElliesMum...I think it may be an anticlimax if everyone came to meet at my lottie...it's only a bit of ground in the middle of a field but we've worked hard on it...it was a complete tip when we took it on last year! It looks fabulous now in comparison...🍋🍊🍓🍅

It's saved my sanity over the last few months, during chemo etc...it's close enough to walk there so I've spent many hours 'pottering about' and sitting in the fresh air having a picnic and a brew! I'm very posh you know...I have a camping stove and a whistling kettle!! 😂☕️🍪🔥

 

Badboob...how are you getting on? 🤕🎀

How are you getting on Sar_ah? 🎀🌼

 

Have a lovely day Ladies, Thankyou for caring xx 😘💪🏼💗 

 

  

 

Shi Community Champion
Community Champion

Re: October 2018 Chemo starters

Just catching up now. Fi 👍❤️That’s brilliant news darling on results, might not seem it to you but it’s great news 👍👍on this weeping wound, get yourself to your unit tomorrow and please get yourself seen again, don’t try and battle through ❤️❤️Don’t worry about making a fuss over what they might think is nothing, you make a fuss over everything, you are important. Aneebel you are good for lots of things 😁😁bringing sunshine and smiles to here and sharing your Lottie tales which make us all wish we were as green fingered as you 😘😘you’ll be back out there soon ❤️❤️You just need to look after you first a bit and then you can look forward to being back out there soon and the weather will be better by then too 💕💕✨✨Shi xx

Community Champion

Re: October 2018 Chemo starters

Yay... What wonderful news Fiona! I bet you were so pleased with your results!! I'm very pleased for you!! 💪🏼🎀😘💗

You just need to sort out your arm pit now! You would have thought there would be some glue somewhere in the hospital!!!! 

(I will be on bisphosponate infusions too!) 

I hope you manage to get some rest and your arm isn't too painful! 🎀

 

ElliesMum...fingers crossed you get a good nights sleep too! 😴💤

 

Hope you're well Badboob! 🎀 And you too Sar_ah! 🎀

 

Im tired today...my 'chest' is quite tight but I'm sure things will improve soon...it takes it out of you having a mastectomy! 🙄😳🤕😥

 

 

 

Community Champion

Re: October 2018 Chemo starters

Thank you for your kind thoughts ladies, you don't know how much it means 😚

My appt was with the surgeon today. He took 13 lymph nodes, of which 6 had been affected by cancer. Chemo had cured 3 of those. And the removal means no cancer in the lymph nodes now. Breast clear too 👍🏻😁

I'm on bisphosphonates now for 3 years to reduce risk of recurrence in bones. I'm a bit disappointed about that because it had never been mentioned before. But on the plus side if it means my risk is reduced then it's ok.

However, the armpit is still weeping. I got thrown today because it was the surgeon and not the registrar I've seen before so any questions flew out of my mind. I have more dressings etc and was told to phone at any time if I'm worried. I think the surgeon was going to glue my wound but they didn't have any as it had all been thrown away recently due to lack of use 😲  Surely it will stop leaking soon? I feel like an old woman who keeps peeing herself 😭😲

So Aneeebel, it looks like I can't apply for the post of crop planter just yet. I'm happy to apply for the post of chief crop taster though 😂 And don't put yourself down, you are if use, to your family and to us here 😚

Thank you again ladies for your support, it really does help 🎀🎀🎀😗

💜Fiona xxx

Community Champion

Re: October 2018 Chemo starters

How did you get on today, Fiona? Thinking of you and Josephine! 💕💐😘

 

Aneeebel, I feel like we all have an emotional connection to your lottie now. If we manage to arrange to meet up (as Shi suggested), we should try to meet at your lottie!!! I have never done any gardening - I have to admit, we employ a gardener at our home 🙈 - but I am willing to be told what to do! 😂

 

Hoping you’re feeling ok, Aneeebel and Badboob. Sar_ah, almost there with the rads! Is your skin holding up ok?

 

I’m super tired but otherwise feeling well. Early night for me tonight! Xox

Community Champion

Re: October 2018 Chemo starters

Hope you got on okay at your follow up appointment Fiona... and they sorted out the wound in your arm pit! 🎀🌷

 

I'm not much use at my lottie either Badboob... in fact, I'm not much use anywhere!!! 🙄🙄🙄🙄

Member

Re: October 2018 Chemo starters

Just a quickie to wish you luck today with your follow up appointment, Fiona. Hope Josephine is on the mend. Will be thinking of you🤞😘.

 

I would love to come and help with your Lottie Aneeebel, but not sure I would be much use at the moment. 😂😂🥴Our first baby bunnies have appeared in the garden. They love to nibble everything and haven’t leant yet what’s good to eat and what’s not, little blighters, where’s next doors cat when you want it! Grrrrrrah! 😡🤬🐰🐰.

 

Hugs

 

 

Community Champion

Re: October 2018 Chemo starters

Hi Ladies 🎀

 

How are you doing Fiona? Is your wound still ouzing? I hope you can get someone to look at it for you..  I'm still shocked they just left it dripping! Unbelievable! 🌷

 

Hope you're doing okay Badboob! How are you feeling? 🎀

 

How's work ElliesMum? And your little Duckling? 🐥

Sar_ah... you're rads sessions are going down now! How are you finding it? 🎀

 

I went to my physio appt... she was pleased with my progress! Has "'tweaked" my exercises slightly but I've got to carry on pretty much as I have been...virtually doing nothing...and go back again in 3 weeks! If my wound is sufficiently healed she will start massaging it and show me how to do it too!💪🏻🎀

I'll have to recruit staff to plant my crops at the lottie...would anybody like to apply!! 🥕🍓🍅

 

Have a lovely day Ladies 😘🎀🌻 x

Member

Re: October 2018 Chemo starters

Wow Fiona hope your ok, sounds like your being given a right run around, you always sounds so positive! Smiley Happy I hope the team offer you some solution and you got some rest today after your night x 

Shi Community Champion
Community Champion

Re: October 2018 Chemo starters

Hi Fi, sorry to hear you’ve had this happen. I know it’s probably not in your nature but kick off about this, speak to pals and don’t get fobbed off. You need to be super careful, please ask about washing with hibiscrub (my surgeon made me wash in this before and after). If something doesn’t feel right then get to your unit, sod them if they don’t do turn up’s you need seeing and they have a duty of care. No one knows your body better than you. ❤️❤️To everyone 💕💕✨✨Shi xx

Community Champion

Re: October 2018 Chemo starters

Thank you Ladies. 

No plan as such, just a great big pad over it. No steristrips or anything else. It's still weeping each time I move my arm too much. I'll see how I get on tonight and then ask tomorrow. It's obviously just my turn for drama 😉

I'll keep you posted 🤗

💜Fiona xxx

Community Champion

Re: October 2018 Chemo starters

Fiona, if it continues to leak you could ask your unit for a small ostomy bag. I had one of these put over the opening in my scar temporarily to catch the fluid as it oozed out 🙈... Sounds revolting but it worked really well! As Aneeebel says, I hope your team come up with proper solution (or at least a plan) for you tomorrow. Good luck, and keep us posted!🤞xox

Community Champion

Re: October 2018 Chemo starters

Goodness me... how bizarre that nobody wanted to do anything yet yesterday they wouldn't drain it because of the risk of infection...now they seem happy to leave the wound open!!!

What happens now Fiona? Is someone going to put steristrips or any thing on it?   

Glad you're home! 🌻🌼🌷

Community Champion

Re: October 2018 Chemo starters

Lovely ladies, you really are the best 🤗

I'm fine thank you. Got home about 10.45. A&E wouldn't do anything "you need to see your specialist team, especially as there is no infection, we'll just stick a dressing on" 😠 So I'm kicked out off a&e at 7ish, walk round to the main hospital, phone the breast care team and leave a message. Turn up there at 8.45 (they don't do drop in appts so weren't too chuffed), explained the situation and was eventually seen at 10. They take the dressing off, it's still leaking like a tap, drain 100 ml off (I've no idea how much ended up in the bed and shower prior to all this 🤔) and its still trickling out from the original hole 😲 Anyway, I now have lots of padding, gauze, dressings, boob tubes and a bed liner to hopefully get me through today at least 😉 Still, if it's trickling out at least it's not filling up again 😂

I'm fine, a bit annoyed I didn't insist yesterday on being seen to but you live and learn. I don't know what's normal in these circumstances so just soldiered on. I'll know better next time 😉

💜Fiona xxx

Community Champion

Re: October 2018 Chemo starters

Oh no Fiona... hope you're sorted and are back at home! Let us know how you get on! 🎀🌻

Community Champion

Re: October 2018 Chemo starters

Oh no, I’m so sorry to hear that Fiona!!! I hope your team can get things sorted for you as soon as possible. Big hugs! Xox

Member

Re: October 2018 Chemo starters

Oh no Fiona! How awful and frightening for you. 😱I do hope the Breast care team can sort you out! It just shows that your instincts were correct yesterday that all was not well. 🤕 Sending positive vides and some flowers. 💐💐🌻👍😘😘

 

Lets us know how you get on. 

 

Hugs

 

 

Community Champion

Re: October 2018 Chemo starters

Morning Ladies

I hope you're all well today? 🎀

A restless night for me and guess where I am? Yes, hospital. I woke up at 4.30 in what I thought was a pool of sweat but hubby thought better and had a look and its my wound leaking 😲. So we call 111 who tell us to go to a&e. We go to a&e, eventually get seen, get told it's best to see the breast care team, have a new dressing put on (by this stage my football has now reduced to a large marble) and are told we can go. So we're now waiting for breast care to open as it wasn't worth going home to come back in an hour or so. Oh the joys 🤔 Fortunately there's no sign of infection but it's still leaking 😲

Sar_ah, the days are ticking down to the end of rads, keep positive 👍🏻

Thank you for all your advice, it's encouraging to know that it's not just me 😉

Big hugs to all 🤗🎀🤗🎀

Have a great day.

💜Fiona xxx

Community Champion

Re: October 2018 Chemo starters

Thankyou for your kind thoughts Ladies... Yes, it's fabulous news! (I actually wanted to cry!!!)

🎀💪🏼💗

I did have half an idea I might have a 'small sherry' to celebrate but fell asleep on the sofa after all the excitement and now I can't be bothered! Ha! 🍾🍸🍾🍸🍾🍸🍾

 

Badboob...how lovely that you're doing well...🎀 And nice for you to have a catch up with your friends hubby! 💙 (Poor squinty! 👙)

-just for info, I was advised not to scrub the glue off, it'll come away naturally, although I don't know exactly where the glue is on you of course! Make sure you rest! (Says she!!) 💐

 

Fiona, the edge of my wound that goes into my back is quite tight today...but nowhere near the size of a football! I'm guessing the main of mine drained into my drain bags as some days there was a lot in them and, to be honest, my 'bits' were more comfortable with the drains in as no fluid build up! (I had them in for 13 days so they drained a lot over that period! 🤕) Hope you feel more comfortable soon! 🌻

 

Hope me you're not too tired with work ElliesMum! 🌷

 

Sar_ah...wow, only 9 more rads! That's gone quick! 🌸

 

Thanks again for your lovely thoughts and concern... It means a lot! 😘🎀 x 

 

 

 

Member

Re: October 2018 Chemo starters

Evening all Smiley Happy so lovely to hear from all 💕 

aneeebel what wonderful news from the surgeon! I bet you feel on top of the world Smiley Happy

badboob sounds like a very emotional day, how lovely that he was so pleased to see you Smiley Happy (maybe not so lovely for squirty though!) 

Glad you had a lovely time in New York Elliesmum, it’s magically isn’t it! 

I have nothing exciting to report here, 9 rad sessions left after tomorrow that’s about it.

have a lovely evening all xx 

Community Champion

Re: October 2018 Chemo starters

Yay Aneeebel, so good to hear that the many difficulties you encountered throughout chemo and the challenges of dealing with a mastectomy was worth it!!! 🍾💃🥳🥰👍💕 I’m so pleased that the surgeon got it all and that your lymph nodes were clear. Woohoo! Take things easy at the lottie, and good luck with the physio tomorrow!

 

Great to hear from you, Sar_ah! New York was fab and my little one had a great time, thank you for thinking of me. 🤗 🐥 

 

Badboob, good to hear you’re ok - and that Squinty survived the hug!🙈😂 Sounds like you had a lovely catch up.

 

Fiona, I’m sorry to hear that the accumulated fluid is giving you ongoing issues. It sounds super frustrating! Has your BCN seen the wound/area in the last few days? If not, perhaps insist on being seen tomorrow morning. I was told that the swelling/fluid would go down, and so didn’t worry about it (wasn’t painful for me, just a bit tight, as I had no feeling in the area). By the time I started to get worried it was too late and the scar burst open... not good! I was also told off for not calling the BCN sooner!?! 🤷‍♀️ So if it’s really worrying you, I would call first thing in the morning and insist on being seen. I really hope they can do something for you tomorrow, instead of having to wait for Thursday. 🤞💕

 

xox

Community Champion

Re: October 2018 Chemo starters

Aneeebel, i am so pleased for you, that really is fantastic news 🍾🍾🍾💃💃💃 You've done fantastically well to beat this, I'm so proud of you.

Thanks for your info 're fluid build up. Mine has kept me off work today. It's feels like I've got a football in my armpit ready to burst and really is quite uncomfortable now. I'm assuming you're only getting a small amount of fluid build up now? I'm not quite sure how I'm going to last until Thursday pm 😭 And hubby is getting another cold 😷 

Good to hear you're doing well Badboob and not suffering any side effects 👍🏻

Apologies for moaning a lot but it's really getting to me now 😣

Take care ladies and big hugs to all 🤗🎀🤗🎀

💜Fiona xxx

Member

Re: October 2018 Chemo starters

Great news Aneeebel! 💐🎉 I bet you are relieved and the news that your mx was the right op for you and that evil bastard has been banished. 😁 You now just have to relax and get better! Trying to take it easy is NOT easy is it! I think we are all so used to being busy that being ill is hard!.

 

Fiona I hope your fluid build up is not too uncomfortable, it must be aright pain. At least the boss will let you have another sticky if you want it.

 

And Elliesmum don’t over do it at work you! I am sorry that your mum has had to go. It must be hard having her so far away. Do you have plans to visit her soon? 

 

Sarah, how lovely to hear from you, you must let us know how you are getting on.

 

Squinty is doing nicely, now a mixture of yellow bruise and blue dye, plus underneath the red antiseptic stuff I have found a large strip of glue ( it was all over my arm as well) I have decided to leave it for now in the hope it just disappears. Finally, I saw the husband of my friend who passed away at Christmas today, he was so pleased to see me that he gave me a huge hug. Poor squinty thought she was about to burst! And of course I jumped a mile! He was so apologetic and then burst into tears which set me off! What a pair! But it was lovely to see him out and about so we had a good catch up over lunch.

Hugs

Community Champion

Re: October 2018 Chemo starters

Hi Ladies 🌞

 

Fiona...I am still getting fluid building up around my wound! I haven't had any of it drained off since I had my drains out! The end of my wound that goes onto my back does feel quite swollen today but the nurse didnt seem worried about it...said it will disperse naturally!

 

I had fabulous news from my surgeon -my main tumour had shrunk quite significantly when my breast tissue was examined but I also still had bits of cancer "dotted about in my breast" which would grow into new tumours...so chemo had worked but the mx "Had finished the job off"... 19 lymph nodes were removed but no trace of cancer in any of them so chemo had killed the cancer off in my nodes...so, mastectomy was the best surgery in my case! 💪🏻🎀

He was pleased with his "handiwork" 👙..  my wound is healing well... 😊

Next stage will be radiotherapy(I see my oncologist next week!)...🎀🎀

(Sorry for my long winded post! 🙄 🎀)

 

Hope you're all well! 🌻

 

💗

 

 

 

Member

Re: October 2018 Chemo starters

Morning ladies, Apologies for being absent for the past week, I don’t know where the time is going!!! 

I hope you’re all well!? Sorry I haven’t read thought the message yet! But it’s been on my mind that I haven’t been following how you all are properly let alone replying so just wanted to stick my head in! 

Elliesmum how was New York! What did your little girl make of it all? 

Hiw are you ladies recovering post surgery? 

 

Community Champion

Re: October 2018 Chemo starters

Morning Ladies

Oh ElliesMum, your little duckling is such a sweetie. I think we all need shares in her 🐥

How's squinty today Badboob?

Aneeebel, are you still having fluid collect? Are you having it drained off at all? I'm just interested to know if mine will eventually calm down. It feels enormous again but the bcn yesterday was adamant they wouldn't do anything because it's not been a week since the first drain. I did try the pillow trick in bed which helped quite a bit actually 😉 I've got the pain in the arm too which you're right, is nerve damage. It feels really weird sometimes doesn't it? 

I'm working from home today 😉and hopefully hubby will finish early so that he can make me a sling and we can then go for a walk 🚶‍♀️

Good luck with your appt today Aneeebel 🤞🏻🎀

Have a lovely day ladies 🎀🎀🎀

💜Fiona xxx

Community Champion

Re: October 2018 Chemo starters

Awwww, ElliesMum, you'll miss your Mum but how lovely that you had her over for a while! I can just imagine your little Duckling looking for her Nanna... bless her cotton socks! 💖🐥

I don't feel too bad at the moment, my wound is quite tight by the time evening comes and the surface of the skin on my arm is so painful..

Yes, I've got my appt with my surgeon on Tues, physio on Wed...so physio will tell me a bit more with regards to what I can do movement wise!

(Sorry, you will know that!🤗)

 

Thank you for asking... 💖

 

Have a nice evening Girls 💖

 

 

 

 

 

Community Champion

Re: October 2018 Chemo starters

I hope you got some rest this afternoon too, Fiona.🤞It’s sounds really hard balancing the need for draining fluid with minimising infection risk. I really hope Josephine and your seroma settle down for you!

 

Alas, Aneeebel, my Mum went home on Friday. 😢 It was so lovely having her here. My little duckling spent the weekend looking for her Nanna everywhere! 🙈 Aside from missing her bestie, my little one is really well. We just need to get her sleeping through the night again... 😂

 

Fiona, I suspect you may be right; I keep forgetting to drink enough water now that chemo is over and I’m less focused on staying hydrated. I’ll try to up my water intake... I figure it can’t hurt!

 

How are you feeling, Aneeebel? Are you seeing the surgeon and the physio this week? How’s squinty, Badboob? Are you ok, Sar_ah?

 

It was a gorgeous afternoon here. I only made it to 4pm at work, but was rewarded with a glorious journey home. 🥰💐💕 xox