Hi Egg,
Re the Younger Women Together event - they are planning the next one in January but think get quite a lot of people apply so I would contact them now to get your name down. It’s a Fri and Sat with accommodation and all food provided by the charity. The sessions range from the medical understanding of BC management (talk from an oncologist) to diet and exercise. We also had a very good talk from a BC survivor and there were a choice of smaller breakout groups covering subjects such a fertility, menopause, reconstruction, communication etc. There were also a tea breaks and a dinner on the Fri night which gave us time to chat to each other. I hope to stay in contact with some of the ladies I met. I did feel a bit emotionally drained and “cancered-out” by the time I got home but it was def worth it.
There’s a separate Facebook group too - search “Younger breast cancer network” and request to be added if you feel it might be useful. They also arrange London social meet ups. I’ve only just joined.
Thank you Ebim and Scotty. I am doing OK!
I’m still in hospital, but waiting for discharge. Had perhaps 2 hours sleep last night - regular disturbances for BP check, drain and wound checks, room mates snoring, new admissions…! Everyone has been lovely but I’ll be glad to be home!
The guidewire insertion pre op was fine, and surgery went OK I believe although I was in theatre nearly 3 hours! I have very little discomfort and have managed to get myself washed (with baby wipes!?) and dressed, including step in crop top!!! I’ve even done my exercises! My homemade drain bag has been invaluable - thanks for the tip Robin/Beedot! I also made a little cushion for my axilla with the same material and look a right bobby dazzler walking around the ward!
My affected/operated breast looks smaller and much perkier than my other one! It looks fabulous but im definately asymmetrical! Am wondering how it will look when the dressings are removed, but they won’t be removing them for another week! The suspense!! I’m already dreading getting the pathology results. I’m even worried that the surgeon has left some lymph nodes behind! How was your post chemo/pre op MRI Scotty? Did you show good response? I think WTPs response was massive. My lump on MRI shrunk from 2.6cm to 1.4cm, so not a great response, and my lymph nodes were still enlarged, but will see what has really happened when I get the results in 2 weeks.
X
Mine went from 5cm to less than 1cm. It seemed to have shrunk even more when they put the wire in. Not sure about nodes under the armpit although they were no longer palpable. Pathology results are terrifying. Glad you seem to be coping well
Blue glad it all went well and that you are up and well enough to post!
I am sitting in scan department waiting to have an ultrasound and then will see surgeon this afternoon to discuss surgery. Keeping fingers crossed! I am also going to ask about having an mRI as don’t trust the ultrasound - the consultant actually missed my lymph node first time round and it was only picked up on MRI so really want to have one of those to make sure nothing is missed before surgery. Don’t understand why they just don’t do that in the first place when they know there have been issues with the ultrasound. Grrrrrrr
Rant over! Positive thoughts now.
Egg x
I saw surgeon and op date is now set for 2nd Aug. Blue like you I am having guide wire. Couldn’t quite understand what she was explaining but I’m going back on 4th July to sign paperwork so will get it in more depth then I expect. What she did say was that they use blue dye in the sentinel node biopsy and that can turn your face and breast blue! I think she thought I was quite mad as I burst out laughing at that point - all I could think of was waking up looking like a smurf! On top of everything else that has gone on!
Hello everyone. The thread has been busy, I’ve been following all your news of surgery etc but haven’t posted. Just scrolled back to remind myself what you’re all up to. If I miss anyone I apologise!
Egg. Good luck for your op in August. I remember the blue dye from ten years ago when I had my mastectomy. It makes your pee blue so be warned! I remember having guide wire for my lumpectomy too. (I had two lumpectomies but they didn’t get all of the dcis hence the mastectomy. I had a full reconstruction done at same time so happy to answer questions about that).
Scotty. Very good shrinkage, you must be pleased.
Blue. Hope your recovery is continuing to go well. You must be pleased to be home.
Fen Hen. Sorry to hear about your nausea and fingernails. I have lost three nails and one more starting to go. This eight weeks after last chemo and despite dark nail varnish!
Jackie. I do hope Lulu is better. I’m glad you’re half way through rads but sorry to hear about the nausea.
Slowski. The fears you describe are quite normal I think. As well as the BCC course Maggie’s do one called WhatNow?
Ebim . Your cruise sounds fantastic. A much deserved break.
Lighthouse, Esther, Beedot, Mooney. Hope you’re all doing well. Hope I haven’t missed anyone.
One week after finishing radiotherapy I went back to see nurse yesterday. She is still concerned about my bad sun burn and I went home with TWO sacks of wound dressings! Some of them are very hard to attach and the advice she has given me is somewhat contradictory so I felt a bit frustrated yesterday. Apparently the burn can get worse for two weeks after rads finishes but then slowly gets better. These side effects!
Losing fingernails but have hair on legs. It’s soft and downy so I’m resisting shaving. Can’t bear the thought of shaving hair when I’m so impatient for it to grow everywhere else!
Hope all is going well for everyone this very hot week. R x
I knew I would miss someone. Wtp!! Hope you’re doing ok and glad you liked your course. I’ve just emailed my nearest Maggie’s Centre to find out about courses. R x
Heard this afternoon that I’ve got an appointment with my surgeon to discuss pathology results on Friday morning. Nerves are kicking in. He said he’d try and rush them through before he goes off on leave but I still wasn’t really expecting it!
Scotty will be thinking of you on Friday and I hope it’s al good news. At least this way you know sooner rather than worrying about it for weeks. Please keep us updated.
Big hugs
Egg x
Oh Scotty, I really feel your anxiety regarding the pathology results. I feel sick when I think of mine and the outcome, especially as MRI has shown the outcome of chemo to not be as good as it could have been. I sincerely hope you get the best news possible on Friday. Do let us know how you get on.
Yes, i am home now but am struggling a little. I am normally a real coper and very capable (even though I say so myself!!!) but am very impatient! I’m finding having to accept help with day to day tasks really difficult. My OH had to help me bathe today, as due to limited arm movement, drains and non waterproof dressings, I couldn’t do it myself, and it really upset me. I hate being so vulnerable! But I couldn’t take another day of baby wipe washing, especially in this weather! I don’t have any pain, just discomfort, and my arm has more movement than I expected at this stage - I can raise it 90° no problem, but I don’t have any strength in it yet - I couldn’t chop the veg for tea tonight so had to ask for help again! The drain is staying in for 5 days I think and is draining 100+ ml a day at the moment. Egg, I definitely recommend getting a bag to carry your drain around! It’s so much easier, and hidden from the children.
I had the guidewire inserted pre op for my lump and also for my still enlarged lymph nodes. It was fine, not particularly uncomfortable.
X
Hi Blue good to hear you are back home and getting back to normal. I saw some drain bags online but when I asked surgeon she said she doesn’t like to put in a drain. Which makes me wonder where does all that excess fluid go if there isn’t a drain!! 100mls is quite a lot to be sitting around on my armpit and boob!
Lol!
I think I’ve read somewhere that some surgeons don’t like to use drains. Maybe the drain being there encourages the fluid to drain and not be reabsorbed? On surgery day and yesterday, the drainage was bloody but watery, and today it’s a straw coloured fluid which I’m assuming is lymphatic fluid?
I will be glad when it’s removed!!!
Thanks for the tip Beedot.
I never thought I’d see the day where my choices for washing were either to wrap myself in cling film and do it myself, or offer myself up to my OH and ask him to help me! He delighted in tickling my feet whilst washing me yesterday so I’m definitely favouring the cling film approach! Luckily, I bought a massive roll when I had my picc line in, so it will come in handy again.
I’m feeling a bit brighter today. Less restricted, more mobile. I’m getting sharp, burning sensations down my arm occasionally if I overextend it and wonder if that’s the nerves settling down a bit?
Is everyone else having an OK week?
Hi everyone,
Blue - well done on getting through the op!
Scotty/Blue - I totally understand re pathology results - through chemo you kind of forget all that awful anxiety waiting for results and then it’s back again!!
Egg - I had my sentinel node biopsy back in December as was originally planned to have mx then too. My nipple is still slightly blue from the dye!!!
Thanks Beedot and everyone else post-op with the tips. I’ll be having guide wires too (which freaked me out more than the op!) and no drains too…
I’ve booked a trip to Sweden for 6 days after op as my surgeon said it would be fine. My OH is coming so he can do the lifting!
Got another biopsy on Saturday which is also filling me with dread. They found another area of calcification on the scan which could indicate precancerous cells. They say they just want to be cautious but I’m scared all over again… surely the chemo would’ve zapped it? Or maybe not if they aren’t dividing as rapidly? Agghhh!
Love to you all and speedy recoveries xxxx
Hi Ebim yes had chemo today. One more to go! I was hoping yesterday that the surgeon would say I didn’t need any more chemo but sadly it was wishful thinking. Have spent the afternoon baking for a school cake sale in a steroid sweat! Told my son his cakes will be called Chemo cupcakes ?
Am now slightly worried about how long the blue lasts for! November till now is a long time! And Wtp is still blue too!!
Scotty all the best for tomorrow am keeping fingers crossed!
